Years ago when I was first diagnosed with fibromyalgia (fms), life got far worse before it got better.
The truth is, at 24 years old I thought my life was over. Aside from living in pain and the bag-full of symptoms that come with fms, I had no energy, no motivation, no social life and worst of all, no hope.
A lot has happened to change that. My life remains far from perfect and is a work in progress but I really wanted to share some of the things that I think you may find useful in helping you to lead a more fulfilling life.
When one lives with chronic pain as we do, a fulfilling life may sound far-fetched. Apart from the physical challenges that come with fibromyalgia, this neurological condition also brings further challenges that may include but are not limited to financial stresses, family disagreements (sometimes due to a lack of understanding), emotional distress, loneliness and isolation and depression.
I really want to encourage you and tell you that you CAN live a fulfilling life. There will still be challenges but if you plan, commit to fighting and find support, none of it is insurmountable. These are some of the things that have worked for me, that I continue to share with people on a daily basis.
As we enter a new year, it is my hope that you will find within you, renewed strength, and most of all, hope, to make life one worth living.
Take charge of your health
I know this might seem obvious but I have to say it. When I was first diagnosed I spent most of the following three years in bed, struggling to make very painful steps and believing that it was all over. A new job forced me out of bed rushing to bus and train every day. It was painful but I equipped myself. I got painkillers and vitamins that worked, I did my daily physiotherapy exercises at home (however little I could manage), soaked in the tub in Epsom salts and I changed my diet, returning to fresh fruits and vegetables, cutting out all processed foods out. I joined a support group and although I didn’t stay, it was important in helping me to find my first fibro friend Sue, who understood exactly what I was going through. You can find a lot of information here in my Meds & Remedies section on how I started taking my health back from fibromyalgia.
Ask for help
I know that many of us have had battles with our healthcare providers. Not all our GPs are supportive. I’ve had my fair share of begging for help, and complaining when it wasn’t given. Speak out! Try to reason to get the help you need, whether it’s a change in medication, a referral or a diagnosis. Complain if you have to. If that doesn’t work, put it in writing. If that fails, go to your local MP, your ombudsman, whatever you have to do. I have gone round and round in circles but eventually persistence pays off!
Get out of bed
This overlaps a bit with number 1. It’s imperative that you find a reason to get out of bed every day. I know when you’re in pain and exhausted the compulsion is to lie in bed all day, but I learned the hard way, this only makes it worse. When we lay down all day our muscles become more achy and weaker. On the contrary, even if it is painful, it is more beneficial to get a little exercise every day, even if it’s just walking to the corner and back. From my experience motivation to get out of bed has to be strong when one is poorly. My motivation came from needing a job. I had graduated and had been looking for a job for a long time. That was the only thing in the way of me getting a fresh start, out of a situation that was really caging me in. Find something that you will be committed to, regardless of how you feel when you wake up.
Living in chronic pain can be isolating and frustrating. People in our lives who don’t have experience of chronic pain may make suggestions and remarks that might not necessarily help you. I cannot over-emphasise how important it is to find people who can empathise with you, cheer you on and share what’s worked and what’s not worked for them. This blog was started out of that need for sharing. A lot of what I’ve learnt from and about fms came not only from doctors and specialists but from sharing amongst fibro-mites. There may be support groups in your local area, and definitely online. I have found equal support from fibro friends in groups on Facebook. The Fibromyalgia 2 and Fibro and Chronic Pain in the Assgroups are among my favourites.
Share
It might seem weird but sharing and finding empathy can really encourage us especially on those days when we need a little reminder as to why we must continue the fight. It also reminds us that we are not alone! I have benefited tremendously from other fibro-mites sharing with me over the years. Take my experience today for instance. I was waiting on a train, when an older lady started talking to me. We eventually started talking about fibromyalgia. I was surprised to find that she knew what it was, and that she also lives with chronic pain and similar symptoms! We shared our experiences and there was this great thing…this camaraderie between us stemming from a shared experience, knowledge and understanding of what it means to live in chronic pain. Meeting her really made my day! And I could tell it did the same for her! When she was leaving she shook my hand repeatedly, smiled and waved me goodbye until my train departed.
Make a difference
Once you’ve got a bit of a handle on your health (*change diet, *exercise, *find support) you need to find a way of making a difference to someone else’s life. You don’t have to give money. You can make a difference to someone else by giving what you have and it will be more than enough! Smile! Have a conversation with someone while you’re out, encourage a friend, give a loaf of bread to a homeless person, volunteer a few hours every fortnight to a charity. Nowadays there are ways to help charities even online. Use your skill for that purpose. For instance, I sometimes write articles, blogs and reviews for charities, because writing is what I do. Whoever you are, there is always something you can do to make life better for someone else. This made all the difference to me, because it took the focus away from my own pain and suffering, and it brought me joy when I saw the happiness it gave to others. Finding meaning in all of this can make a difference to your life too!
Start a project
It doesn’t have to be anything grand. Starting a project that means something to you can give you the oomp you need to get out of bed on those days when you can’t see the light. For me, it was writing a book for my grandparents.
However bad it is, the effort required for taking your life back from chronic pain is worth the time, pain and energy. You’re life is worth it and you are worth it. If you don’t do it, no one else will do it for you. Sometimes family and friends won’t understand, and I know first-hand that it’s hard, but it’s gonna be alright. You’ll see that, once you find people who can relate to your experiences and stand by you. Slowly, bit by bit you will build yourself up, and as your courage mounts, you’ll find the strength you need to push forward.
21 Replies to “How to live a fulfilling life with chronic pain”
Thanks for all the great ideas. I’ve been suffering from Fibromyalgia since I was in my late 20’s – early 30’s, somewhere around there. It’s been a long haul. It’s been a painful haul. Many times I’ve felt to give up, to lose hope, when hope was all I had. Unless you suffer from chronic pain, you won’t get it. I have a long list of invisible chronic illnesses that bring with them, chronic pain. Most of my days are spent in bed, and you are right, I’m getting weaker by the day. My muscles are atrophied. Now, I haven’t been in bed since my 20’s or 30’s. It’s been about 5 years, I hate to admit. About the only time I really get out of bed, just because it’s the most comfortable place, is to go to all the doctor appointments, at least 3 every week. I have a Tempurpedic bed, that we’ve had for about a year now. The head and the foot of the bed elevate, which makes it the most comfortable place for me to even sit. I don’t lie in bed all day, watching tv. I really watch very little tv, even though it’s always on for my white noise. Us ADHDer’s know what I’m talking about. Anyway, I do a lot of things. I just do them from my bed. I’m going to break out of this bed this New Year, starting in a day or 2. I’ll start out slow, for short amounts of time, to begin with. Last night, I actually got out of bed and went downstairs to the family room to ring in the new year. My dog is so funny, she was walking around with her tail tucked between her back legs because she had no idea what I was doing. It was something new and it made her very nervous. I hauled blankets, pillows, and everything I would need for the evening, down the stairs and I actually stayed down there til about 9:00 a.m. this morning. I do have to start making myself get out of bed, like I used to. I determine an amount of time I believe I can handle and then I set a timer and when the timer goes off, I get back in bed for 30-60 minutes. I set the timer, again, When the timer goes off, I get back out of bed. That’s how I used to do it and I’m going to start back with it. My main problem with the whole thing is that I have this ALL or NOTHING approach to everything………..I’m working on finding moderation. It’s not going too well, but I won’t give up. I do nothing at all, or once I start something, I do NOT stop until whatever I’ve started is finished. Then guess what happens? I’m in even more pain than I was to start with and then I have to pay the price for weeks and sometimes, even months! Chronic pain is difficult to live with, but I do find if I can get involved in doing something I truly enjoy, it takes my mind off the pain. Does it go away? No, but at least for awhile, I can forget about it. I can find joy, if even for only an hour. The key is to start out slow, baby steps, and work up to a decent amount of time to be out of bed, every day. I’ve read many blogs today, as I’ve been lying here in bed. LOL 🙂 this is the blog post that has inspired me the most, today. Don’t get me wrong I read a lot of very inspiring blogs, wonderful blogs, today. I just happen to agree with EVERYTHING you’ve said, here. So glad, I found your blog. Thank you for inspiring me to get up off my butt and do what I know it is, I need to do. I may be in a chair, but I will be getting out of bed. I’ll do some exercises, and we’ll just start with that. Getting out of bed and doing some form of exercise every day, I think is a good plan. I’ll determine the amount of time when the time comes to get up. I want to get to the point where I’m out of bed most of the day. This doesn’t mean I can’t be on the couch or in a chair. The goal is to be out of bed. I’ll add more goals as I accomplish these first two. Happy New Year! Take care. 🙂
Happy New Year my friend!
Wow! thank you so much for taking the time to share with me!
First of all let me say that I am sorry you are struggling in this way but I am so glad that you came across this post and felt encouraged to set yourself goals. For a healthy person, the task of getting out of bed might seem easy but we know it’s not that simple. I am so proud of you for committing to this goal, and I believe in you and have every faith that you can and will do it!
I can also relate to the notion of all or nothing. I have this quirk where I must finish anything I start and not doing it makes me feel like I’ve failed, to the point where if I think I can’t do something, I’d rather not try it and risk failing. This is something I am trying to work. Slowly, but surely we will get there.
Stay strong and feel free to stop in and let me know how you’re getting on! I’m really really happy and pleased for you! it’s a big step and I know you’ll make it! you’re not alone and I’m sure there are people in your life rooting for you, just as I am!
Gentle hugs:)
Alisha x
Hi Alisha, so glad to be meeting you today. I’ve written down the goals that you posted on your blog for yourself. I’ve written down your wordpress address, so I can find you and let you know how I’m coming along with my goals, and to check in and see how you’re coming along with your goals. I’ll be there to cheer you on. I just need another day or 2 to take it easy. I think I’m getting sick, again. Just finished a breathing treatment and everyone around me has been sick. I’m going on about 3 very restless hours of sleep. If I make myself do things when I’m not feeling well at all, like being sick, sick, germ sick!, I will for sure set myself up to fail and failure isn’t on my list of goals for this year. I accomplished that in 2015. no need to do it, again. I hope you don’t have trouble sleeping, but I’m guessing you do. So, I’ll be seeing you around. Feel free to stop in and check out my blog. I write about a lot of different things, but everything has to do with my journey, what it’s like to be chronically ill, to live in chronic pain, and all the other lovely things that go along with chronic illness(es). The roller coaster ride of emotions, you’ll see. One day I’m up and optimistic and then next day I’ve done a complete 360!!! Just how it is. Good days, bad days, and everything in between. I’ve found blogging to be very therapeutic for me. This February will be 3 years! When I started my blog, I had no idea what I was even doing. One of my therapists recommended it. I didn’t figure I would keep up with it, but I wasn’t expecting the overwhelming support, love, and kindness, that was to be bestowed upon me, just because I was sharing my journey with the world. I didn’t even think anyone would have any interest in reading a blog about someone they don’t even know. I had no idea. Blogging has been one of my greatest achievements because I kept with it, even when struggling to write. I love it and I can’t really ever see me stopping. I best attempt to get some sleep, so I will have to tell you goodnight for now, and I’m looking forward to walking the journey together. have a great night or day, whatever it is, wherever you are. Peace, my new friend. xxx 🙂
Hey Tammy!
Yeps I have problems sleeping too! I’m going to try and get some sleep now. Hope you have a good rest!
I’m really sorry to hear that you’re not feeling too well. Whatever you do take it easy and remember to pace yourself. It’s alright if some days we can’t work towards our goals as long as we stay committed and return to them when we can.
I was looking around your blog to see if I could subscribe (easier to get posts whenever you write something new as I forget alot) but couldn’t find the subscribe button. Do you have one? Will have a proper look around later today (I live in London so it’s now 5:40am) after I’ve rested a bit.
I can also relate to being up one day then down the next. It’s very difficult but blogging has helped me alot with that too! I was reluctant to blog and had to start as it was mandatory for my uni course I was doing years ago. But oh boy! it turned out to be such a blessing! Like you I have met alot of empathetic, caring bloggers all over the world who I’ve learnt so much from, some of who I even now consider friends. I’m really happy that throughout all the challenges you stuck with blogging! and another plus is that I’ve gotten the opportunity to meet up with you! thank you for your support:) we are so much stronger united than alone. Wishing you better soon. Hugs and love:) xxx
Alisha, I know other’s are following because I get a notification of every “follow” I get. I do see that you are following so, somehow, you must have accidentally fallen upon it without realizing it. Usually it’s in the upper left hand side of the page, but I’ve been seeing some in the lower, right hand corner. When you select follow it should give you the option to recieve an email every time I post something. You may want to check your settings. You may have that part turned off because I know I don’t want a notice of every single person I follow, every time they post. I had it set up that way in the past and my email was so over-flooded with email, I couldn’t even keep up with it. The people that I talk to on a regular basis, we usually see each other’s posts, but check your settings and if you want an email, it should give you the option to have it for one and not for another. Now, don’t get me wrong. I don’t mean that I don’t want to know when everyone I follow posts something to their blog, but I follow a lot of blogs, not only people that follow me, some people only follow those that follow them. I don’t really keep track of how many follower’s I have, as far as numbers go. If I like a blog and I want to follow it, I do not expect a follow in return. A follow, in return, is always nice, but not mandatory for me. Well, I thing we best, both, try to get some sleep and we can talk some more tomorrow or in a few days or whenever we’re both back on at the same time. I want to get back over to your blog and read some more. I just had a lot of catching up to do. This blogging is a full time job, just in case you didn’t notice. Sometimes I can barely keep up with replying to all my comments, which is, by the way, mandatory for ME. I maybe wouldn’t have that problem if I were on here as much as I used to be, but now that I’m going to have to be getting up out of bed, I’m going to have a little less time here, but more than I’ve been doing lately because I really miss all my friends here, when I’m away for too long. I’m glad to have made another friend, in you. I’ll be walking the journey alongside you. Okay, for real, now. Sleep………………let’s just try it and see what happens. Goodnight, my new friend. xx 🙂 Peace.
Oh thank you Tammy! I actually stumbled upon it not too long after asking you! lol
I totally understand what you mean about following other blogs. I treat it in the same way. I find following useful for keeping track of blog posts that are of interest to me and I don’t always return a follow, but in this case I did because I wanted to! though I often think I should do something but then there’s a disconnect between my thoughts and actions when I forget! hehe
I’m still wide awake but really going to try now to be sleep’s friend:)
Try to get some rest, we’ll chat soon:) Night my friend! (woohooo for new friends!:D) x
Yes, ma’am, I think we’d best get to sleeping. woohoo for new friends! Yay!!! Okay, seriously, for the 83rd time, we must sleep. Til tomorrow, my friend. Sleep well. Sweet dreams…. I don’t dream……..isn’t that weird? My REM sleep is delayed by over 3 hours according to the sleep study I had done, so if I only got 3 hours of unrestful sleep last night, no REM. for me, but that’s okay. I’ll leave all the dreaming to you. I hope they’re good dreams. 🙂 My eyes are barely open and I know my spelling is going to pot and my punctuation is doing the same. Rest, my friend. rest….. xx 🙂
Hey Tammy! hope you’ve had a great rest! I woke up about three times and went back to sleep as I do but up now and will be heading to shops soon.
That’s so interesting! where/when did you do that sleep study? I actually wanted to attend a sleep clinic as I’ve had lots of issues around sleep- of late I’ve started getting out of bed, running for the door! It feels weird because I wake up just as exhausted but I guess for me to be dreaming that much I must be having REM sleep, which is usu better after taking meds. Have a fabulous day my friend:) x
Hi Alisha, sorry, It’s taken me a few days to get back here. I went to the “back” doctor yesterday and saw the nurse practitioner. Next Monday, I’m going to be getting more injections in my back. Hopefully, it will help, at least a little. She said I can’t do physical therapy til we get this pain under control because it will only hurt me and I won’t be capable of doing it. So, hopefully, this next set of injections will help. By looking at my pain sheet I had to fill out for 7 days after my last injections, she said it let them know that they were in the right place and it did work because it showed immediate relief. It just didn’t last. Anyway, yesterday she took me off Flexeril and put me on a different muscle relaxer. I came home and got in bed to meditate and I fell asleep. Of course, I had taken one of the new muscle relaxers and I’ve been doing a lot of sleep. Still tired, though. I slept yesterday from around 1:00 p.m., maybe 2:00 p.m., anyway, sometime around then, til 9:00 p.m. when I woke up and took my bedtime meds, including another muscle relaxer and I decided to meditate. I like to meditate at least twice a day, it usually does not put me to sleep. Let’s see……………so at 9:00 p.m. I took the meds and laid down to meditate and I fell asleep, again and I slept til 1o:00 a.m. this morning. You would think I’d be well rested, wouldn’t you? No, no ma’am, I’m not. Still tired. Could go right back to sleep right now, but I’ve got some things to do, such as blogging. LOL I just had my primary care doctor, at the time, order a sleep study for me because I was so tired all the time. Myself and everyone else I’ve known to have a sleep study, has it done in the hospital. You go to the hospital at 10:00 p.m., the get you all prepped, putting all these electrodes all over your head. Can’t remember if they put them all over my body or not. I’m thinking they did, but I mostly remember all of them on my head because they use this stuff like vaseline or something and let me tell you, it took 3 days to get that out of my hair. I could wash, and wash, and wash my hair, that stuff wasn’t coming out and I have very fine, thin hair. I had to walk around looking like I never wash my hair. It looked super oily. Luckily I had it done on a Friday night. You could have other things besides delayed REM sleep, going on. You could have sleep apnea, and a whole long list of other things, and if no one can tell you what the report means, what good is it? When you get up out of bed and you are running to the door, are you asleep at first and you wake up while running to the door? LOL that’s kind of funny, but could be dangerous. I mean, would if you just kept right on going and went out the door and you weren’t awake? That would not be good. Maybe you should add another lock to your door, like one of those locks you see people with small children, putting at the very top of the door, where they can’t reach it and hope the kid isn’t smart enough to get a chair. LOL Maybe you aren’t in REM sleep long enough? Who knows, but it would be interesting for you to have one done and with what you are telling me, I don’t think you would have a problem getting your doctor to order a sleep study test for you. You get there at 10:00 p.m. and they kick you out, bright and early, whether you’re awake or not. I remember thinking, how rude was that, to kick me out at 6:00 a.m. After they put all the electrodes all over, they tell you that you can sit in the chair and watch tv til you’re ready to go to sleep. Then they watch you the whole night. There’s a camera on you and if you should wake up or anything they will see it and talk to you over a speaker to see if you need anything. It was interesting. I’m thinking you probably better get one done. Seriously, one day you may not wake up when you get to the door. I hope you had a good day, and sorry it took me so long to get back to you. Take care, my friend. I look forward to talking with you some more. I don’t always get on here every day, anymore, but I’m going to try to do better about it. I want to focus on writing more on my blog. I’ve been kind of slacking, for awhile now. I get very frustrated when I can’t write something that I feel is good enough to post. So, I shall see you around. Peace out! xx 🙂
Aww thank you Tammy! I’m so sorry I took this long to come back to you. It’s been incredibly stressful with having to move house. Haven’t unpacked anything- spent the entire afternoon cleaning!
I’m so sorry that your pain levels have been so bad! I really hope that you can find a solution that works and more importantly keeps. Afterall, what good is a painkiller if it relieves your pain but doesn’t last very long? Gosh you must be feeling tired. Usually when I’m exceptionally exhausted (though every day exhaustion levels are exceptional! lol) I sleep for longer hours, but like you, don’t wake up refreshed!
Wow! thank you so much for sharing that experience of doing a sleep study! where are you based again? because my GP is always reluctant to refer me for anything. Here in London doctors have to account for every referral so they are always resistant to it! I got into a big tiff months aback when my GP refused to refer me to a fibromyalgia clinic which was the only service that’s ever provided useful help to me. I can’t believe they kick you out at 6am! that’s cold and heartless isn’t it?!
Usually when I wake up, I am confused thinking, why am I standing here doing nothing? last time it happened I was nighting over at friend’s house for Christmas and all I recall is friend also staying in room asking me if I was ok. Next morning, I asked her about it because I wasn’t sure if I was dreaming (I dream alot!) or if it really happened. She said I was headed for the door but I don’t know why. And can’t figure out how I’ve managed to not bump into walls and things! My grandfather and cousin talk really loud in their sleep, so I don’t know if this kinda thing is hereditary.
Overall did you find doing the sleep study helpful? I wondered if that’s what you meant when referring to practitioners not explaining what study results mean. I’d find that annoying.
I can relate to being frustrated when I can’t write more. So much has been going on, my blog and writing have suffered terribly. We’ll get there though, one step at a time!
Chat soon my friend! can’t wait to catch up:) xxx
Hi Alisha, I’m in the U.S. and I’m on disability so I’m on Medicare and then I have a secondary policy. Luckily, I never have to pay for anything, except very small co-pays on my prescriptions until I’ve paid so much out of pocket and then for the rest of the year all my prescriptions are free. I am not lucky, though, because I am permanently disabled and I will never be able to work, again. I loved my job and the people I worked with. Sigh……………..I hate it when people tell me how lucky I am that I don’t have to get up and go to work everyday. I tell them that I’ll trade places with them and they can have ALL my diseases and conditions and I’ll be more than happy to get up at 5:00 a.m. to get ready for work and go to work and work full time.
I didn’t know you were in the middle of moving.
My daughter used to sleep walk when she was like in 2nd grade. It was so scary because one morning we woke up and she had gone downstairs in the family room, at the back of the house and the blinds were pulled up, so we know she was at the door. Have no idea if she actually went outside because the door was unlocked, too. Don’t think she did, though and if she did it would be hard for her to get out of the backyard because we have a 6 foot privacy fence and the gate on each side isn’t that easy to open when you’re awake. She always had her eyes opened and looked like she was wide awake. One time we hadn’t gone to bed, yet, and here she comes, down the stairs and I kept asking her if she needed something and her responses were so off the wall. She used to have to practice her multiplication every night because they would have these timed tests to see if they could get them done in 2 minutes, I think it was. We had the stack of papers, the actual tests for practice, on the kitchen table, and I was just messing with her and asked her if she was ready to practice her timed multiplication facts, and she said yes, and sat down at the kitchen table. I gave her the page and I set the timer, she had her pencil, I started the timer, and when the timer went off, looked at her paper. It was hilarious, she could always get them done in 2 minutes, but once they passed that one, the next one would be harder. Anyway, some of the answers she put letters. None of it made any sense. We got a good laugh. It used to scare me to death that she would go out the front door. Luckily, she never did. She looked totally awake and you would never know she was sleep walking unless she started doing something weird, like one time she was hanging over the edge of her bed, digging around for something, and I asked her what she was doing and she said she was looking for her bread and couldn’t find it. LOL She did that for a couple of years. She would do it a lot, for awhile, then it would be awhile before she would start in, again, and do it often, then have a period of time where she wasn’t doing it. Funny, but scary. I was also afraid she would fall down the stairs, but apparently you can see, but you’re asleep. The doctor told me to never try to wake up someone that is sleep walking. Can’t remember the reasoning behind that. She outgrew it and I hope she never does it again. She used to talk in her sleep, too. But, I’ve done that, just not often, like she did.
My sleep study was totally a waste of time because no one could tell me anything except that my REM sleep is delayed for over 3 hours. Every doctor even said, “I don’t know what this means.” Real helpful.
I think people with fibro, all have CFS. I’ve never heard of anyone that didn’t. It really sucks to be so tired all the time, but you kind of just get used to it. Nothing we can do about it.
I hope you get everything moved in and squared away. I hate moving. We used to move all the time because I liked to, but we eventually bought a house. Are you in an apartment or a house? I hope you really like your new home. .I’ve always heard that other countries may have free health insurance, but they get really crappy care. Don’t know if that’s the way it is in London, but here we pay a lot for health insurance, and usually get really good care. There’s always gonna be doctor’s that aren’t any good, so you just go to a different one. Since I’m on disability and I’m on Medicare, my premiums aren’t too bad. If I didn’t have a secondary premium, I would have to pay whatever Medicare doesn’t pay. The secondary insurance premium picks up whatever Medicare doesn’t cover. That really sucks that you can’t go to the fibro clinic. If you have fibro, why wouldn’t they allow you to go there? Ridiculous. So sorry. do you, at least, have a good doctor of some sort?
Well, you are probably sleeping. I don’t know the time difference, and I need to be sleeping, but I just wanted to check my blog, real quick. You know my real quick???? LOL 🙂
As you said, one step at a time, for us, and we’ll eventually get somewhere, hopefully. To not give up is key, and that’s not always easy to not do, but I’m really going to be working on that. It’s a waste of valuable time that I can’t get back.
Goodnight for now, my friend.
I don’t know if I told you or not, but when I went to the “back” doctor, I did find out he’s a pain management doctor. Anyway, I was on Flexeril, muscle relaxer, which wasn’t helping at all, so they put me on a new muscle relaxer and it’s been helping with the pain and I’ve been sleeping a lot. Still feel tired all the time, but it’s annoying to lay here awake while everyone else is sleeping and I’m so tired. Time for me to take my bedtime meds and hit the hay for the night. Talk to you soon, my friend. xx 🙂
Hey Tams! I’m glad you’ve got Medicare so you don’t have to pay too much on medical care. Here in England health care is ‘free’ but us working folks pay contributions towards it. The service is usually excellent but ever so often we encounter doctors who provide crap service. It’s been under alot of scrutiny lately with alot of internal problems that cause problems for us patients. Sometimes it’s just hit and miss but I’m still lucky I don’t have to pay everytime I go to the doctor or hospital because that’s quite often lol. I pay for my medication but thankfully found out about a scheme that I pay for annually and I don’t pay anything more if I am prescribed more meds.
I’m really sorry your sleep studies haven’t been helpful. It’s just awful if you can access them but can’t get doctors to tell you what they mean!
I’m sorry you’re so tired as well! I can definitely relate to it. But I think being on my own in a foreign country has really compelled me push my body to the limit as I don’t have any other means of providing for myself. If it wasn’t for that I don’t think I would have gotten to the point where I could work. And often it is problematic but I try my best and hope it works out. I don’t think people realise how much working can add stability to one’s life. For me it does, because I don’t have much of a social life so in a way work is a social thing for me too. Sometimes it’s the only time I get out. I’m terribly sorry you can’t work. I am happy though that you discovered blogging (so I could meet you hehe) but more importantly, because it provides an avenue for you to vent, share and meet other like-minded people. It mightn’t seem like much but it’s a big deal! I meet people all the time who go ‘wow’ when I tell them I blog. I’ve met other writers too who’d like to do it but aren’t brave enough and honestly it doesn’t require great courage because you are basically baring your soul to the world (to an extent) and exposing yourself to the many idiots out there in the world. I’ve had negative feedback too, as we will get from time to time, but I just hit the DELETE button and try not to take it to heart. They’re just opinions and weighed up against the many more positive comments we get, they don’t matter.
You know as you mentioned your daughter sleep walking and having her eyes opened, it reminded me of something. Years ago when I was living with a guy I was dating, he told me I used to wake up in the middle of the night, eye wide open and would be asking him questions. Initially he didn’t realise I was still sleeping until he tried having a proper conversation and I kept repeating myself. He said he’d put me back to sleep or tell me go back to bed and I’d just do it! Id wake up with no recollection of it. I always started rolling off the bed. Sometimes I’d wake up, other times he’d just to come get me or when I started living alone again I’d just wake up on the floor! really weird, but my experience has been that these things tend to happen to me more when I am distressed or anxious about something. I also realised I started having night terrors where I’d scream in my sleep or run, as in the case the other day. Hopefully it will stop or get better with time, my doctors have said.
In London, because housing is so expensive! unless you’re rich or have family or are in a pair and can afford to rent a property, alot of young professionals and increasingly, middle-aged professionals rent ‘shared’ properties. You rent a room and share kitchen and living room. In my case I rent an en-suite bedroom as I’m particular about cleanliness and won’t compromise on the bathroom. I was surprised when I came here to see how much smaller properties are as opposed to New York where they are much larger. (I used to spend summers in NYC as part of my family is there). but houses get much larger outside London, in the countryside and on the border. It’s ok here- it looks nice on the outside but it has it’s downsides and I may be looking to move when I get a chance.
Try to get some rest and I hope your body adjusts to the new muscle relaxer. Sometimes it does, othertimes it won’t so you may just need to keep searching till you find something that works for you. It’s a crazy ride with looking for the right meds I know. Sweet dreams my friend!:) xxx
Hey, hey Alisha,
good to hear from you. I’m glad to know that your health care is good. It’s that way, anywhere you go, as far as hit and miss. Not all doctor’s are good doctor’s, and are only in it for the money and don’t really care anything about actually helping the patient, especially if it requires a little more work on their end of things, getting you a diagnosis. I’ve been to a lot of bad doctor’s and as soon as I realize they are bad doctor’s, I move on. I am my own advocate. If I don’t advocate for myself, no one will. It took awhile to figure that out, and a big part of figuring that out, was running into “bad” doctor’s.
So happy you are still able to work. That’s one thing I really, really miss. I’m still grieving over a part of my life that’s been, forever, lost. It really bums me out, at times. But, I must accept it and make the best of what I do have because it’s not ever going to change. I just have to figure out, what it is I can do. After all, I’m not dead, yet! It could always be worse, right? It is what it is, right?
Your whole sleep situation is very interesting, to say the least. When my daughter was doing all that sleep walking and stuff, I tried to talk to doctor’s about it, because I didn’t know why it was happening or if it meant anything in particular. I never got any real answers. I’m glad she’s out-grown it with time. You probably will, too, at some time. Until then be careful, wouldn’t want you to end up outside!
Your living situation over there in London sounds very interesting. I didn’t know about that. What drove you to London, in the first place? If you don’t mind me asking and if you do, no worries, just skip this question. It’s all good.
About rest? Let’s see. On Monday, I had to go to the Surgi-Center to have injections into my back for Sciatica and Piriformis (you can look it up if you don’t already know what it is). Anyway, this was my second time About 3 weeks ago, was my first time having the injections, and there were no problems, no sedation. This time they asked me if I would like sedation, and I figured if they were offering it this time and they didn’t last time, there must be a reason why, so I said sure. I got there yesterday morning, was prepped by the nurse. She put the IV in my hand, as most of my veins are too small and full of scar tissue from all the IV’s I’ve had to have over the years. The anesthesiologist came in to talk to me before I was wheeled off to the procedure room. I asked him what medication they were going to use to sedate me and he said Propofal. Same medication I’ve had many, many times, with 14 surgeries, and all the other procedures I’m always having to have done. For instance, I have esophageal motility disorder and about 3 or 4 times a year, I have to have an EGD done to dilate my esophagus because it gets to where it’s difficult to swallow. They always sedate me for that. Every time my feeding tube has to be replaced, usually every 3 or 4 months, I’m sedated, and many other procedures I’m always having to have done. Anyway, I’m used to the medication and I’ve never had any problems with it. I had 1 hour of sleep, the night before, so I was really tired when I got there. The doctor said that because of the steroids they were injecting into my back, I may have trouble sleeping, I may have headaches, abdominal pain, and nausea. Some do and some don’t. I told him, I have all those symptoms every day, except for the headaches. So, I was slow to wake up after the procedure. I got home and I was looped from that stuff and the lack of sleep, here lately, I’m guessing. Figured, great, I’ll go home and sleep all day and night. NOT! I, of course, have to be the one to have all the side effects, of which I already have, but this is way worse than my “normal.” I was awake all day yesterday. I was awake all night, last night. Had to be at an 8:00 a.m. doctor appointment and another appointment at 11:00 a.m. today. By now, I’m really looped and I’m questioning myself, as to whether I should be driving like this. I drove, and I did fine. Got home from appointments and by now, I was really feeling super looped. I’m thinking they may have given me too much of that Propofal. I’ve been awake all day today until 6:00 p.m. when I decided to meditate and I fell asleep for 1 whole hour, while meditating. I’m still tired, but cannot sleep. I’m going on about a total of 3 and 1/2 hours sleep since Sunday morning. I forgot to say, that when I got home yesterday, I did sleep for and hour and a half. Looking like I’m going to be awake all night, again! He must have given me one hell of a dose of steroids! I’ve had steroids on many occasions for things like asthma and bronchitis and I’ve never had a problem with sleeping while on them, as long as I wasn’t already riding the insomnia train! Needless to say, I am delirious at the moment! Sigh……………….all I want to do is sleep and I can’t. If I go too long with no sleep I will snap, as would anyone else that went this long with so little sleep.
The new muscle relaxer is working, nicely. Fibromyalgia was actually one of the reasons listed on the drug information sheet, as to what it’s used for and side affects, and such.
The doctor that did the injections said it could take up to 3 or 4 days to get any relief, but I had instant relief, same as last time, but last time, it didn’t last. My back pain has been at a zero on the pain scale, ever since this last set of injections. Maybe this time it’ll last. If not, he said next I would be receiving an epidural. They have to get this pain under control in order for me to be able to get into physical therapy. He said I wouldn’t be able to handle it while in this pain, but I do need some serious physical therapy for my left hip and left, lower back. I, also, have many atrophied muscles, reason for “serious” physical therapy.
I’m having one heck of a time typing this because I’ve got band-aids on several fingers because in the winter time my skin gets so dry and cracks. I have all these painful, little cracks on several fingertips. They feel like deep paper cuts. So, on that note, I’m going to end right here, for tonight, but I shall talk to you, again, soon. Hope you’re having a good day. I’m assuming it’s daytime over there. Until next time, peace out, my dear friend. xx Tammy 🙂
Oh wow Tammy! I had no idea that on top of fibromyalgia you had to deal with all this other stuff! feeding tube, Sciatica and Piriformis and these cracked fingers! I didn’t know what Sciatica and Piriformis were so I googled them. It sounds very difficult! (big hugs).
I’m sorry you’ve been sleeping so poorly. I really suffer when I can’t sleep but I finally got my doc to change my meds and I’m now again on Amitriptyline which helps me to get some sleep (even if not restorative) along with my other meds.
Wishing you some great, sound sleep very soon.
It sounds like such an experience getting those injections! Really hoping your pain levels continue to improve too. I have a friend with a permanent feeding tube and I know it is tough for her, so I truly empathise with you.
I moved to London over 6 years ago to study for my MA. I always wanted to live here so I kinda knew I might have stayed. It was the easier choice (even if it wasn’t easy being away from my family), in a sense it offered me a fresh start. Has your doctor suggested anything for the cracks on your fingers? It’s not the same thing but when I was younger my acne was so severe I was on the strongest oral medication for it (Roacutane) and it caused severely dry lips, so my lips would crack and bleed. It caused me so much discomfort and after a little over half a year on it, I quit. Have you tried Cetaphil? I loved using it for deep moisturising but it’s different from the one I get in the US so I haven’t bought it in a while.
I know it must be hard not working. After I graduated, it took a long time for me to find a job and I was so ill I could barely manage and needed help to be lifted up in bed each day. Sometimes, ever so often I have days like those but I’m thankful I’ve come a long way. It made me feel depressed thinking that I might not be able to work. Perhaps in the future we can work on a project together. I find that doing something meaningful to make a difference really helps me when I’m struggling.
Try to get some rest and not to worry about replying when your fingers hurt.
I admire your optimism, it is something I have always struggled with. but sometimes I think about Stephen Hawkins who, even in his position, said that no matter who we are, there is always something that we can do. So i try my very best to make my time here on this earth count, in whatever small way I can.
I’m about 4 to 5 hours ahead of you (depends on the state your’re in I think). Week has been challenging so far but I try to take it one moment at a time. I am both excited and anxious working on my latest novel which I hope I will be able to release in a few month’s time. But I’d like to get back to writing my next work as I feel like time is so limited. But I still feel very unsettled and not sure how long it will take for me to feel stable in my new place, before I move again!
Anywho…will stop blabbing on now. Have a peaceful rest and I’ll chat soon. Anytime you like if it’s easier to skype so you don’t have to type you can just let me know! xxx
Oh also forgot to say that I totally agree with what you said on replying to comments. I feel it’s important to respond in a timely fashion cuz you just never know when someone really needs the support, among other things! x
Sometimes it doesn’t get done in a timely fashion, but it ALWAYS gets done. The only reason it sometimes doesn’t get done in a timely fashion is because I’m not on WP, but as soon as I find my way back, I reply to each and every comment, even if I’m just saying hi. It’s been a rough year and I’ve been struggling with a lot of things, other than my health. I miss my brother so much. He passed away on Sept. 1, 2014, unexpectedly in his sleep. He and I were the 2 middle kids of 4 and shared a special “middle kids” bond. I can’t even express how much I miss him and how sad I get, often, because I can’t call him anymore.. He’s not there on holidays. We had all of our little “inside jokes” just between the 2 of us……………… 🙁 I sure like the way that we keep saying we must get some sleep and an hour later, we’re both still here, and obviously not doing any sleeping. I really better give it a try before I snap. I don’t do too well with under 3 hours of restless sleep…………………..Once, again, goodnight. I’ll be back tomorrow. Have a good slumber. xx 🙂
Oh Tammy, Im so sorry to hear about your brother. It’s a terrible thing to lose a loved one. Just from the way you speak of him, one can sense the magnitude of love you have for him. I wish I knew what to say to comfort you. I think what comforts me is believing in an after-life. My belief-system aside, since I was a young child I struggled to understand why we are here, and though I never arrive at a answer, I always conclude that we can’t just be here to live this short life and then vanish forever. Hugs.
It is rather funny, us both saying we’re going to bed yet we’re still here lol. Sweet dreams my friend:) x
I’ll respond to this tomorrow since I just told you, about 2 minutes ago, how serious I was about really going to sleep this time……………………We better behave, now, and get some shut eye. Better get rested up for our chatting tomorrow. I’m a chatter, so beware, but I think I’ve found my match. LOL LOL 🙂 for real, real…………goodnight…………..:)
LOL, I promise I was going to reply to your last comment later today but I just laughed so hard when I saw this, had to let you know Im still reading your comments, while ‘sleeping.’ 😀 Have a good rest! 🙂 and I’m a very active dreamer! 🙂 Night Tams! x
I’ve been suffering from a back injury for months now, and been dosing my self with a lot of pain relievers. I’m starting to think that I might take away the pain of my back with the meds but at the same time punishing my liver slowly. So I started reading articles about marijuana and it’s medical aspect and found this along the way http://www.ilovegrowingmarijuana.com/cbd-in-medical-marijuana/
I’m already 34 years old and haven’t tried smoking or any other means of using marijuana and I have nothing against it. My question is that if I try it would I be dependent at the same time addicted to it? And will it really ease the pain? Thanks in advance to those who’ll answer.
Hi Peter,
Thanks for reaching out. Have you done physiotherapy? I found it very helpful when walking was very painful for me. With marijuana, I’m afraid I don’t know the answer to your question. I know of people in support groups who are able to get it medically in the US and say it helps. I know Morgan Freeman who also lives with fibromyalgia is a proponent of it and says it helps too. Of course, just as with meds, there is always a chance of becoming dependent on any substance. I hope you find the answers you’re looking for.
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Years ago when I was first diagnosed with fibromyalgia (fms), life got far worse before it got better.
Thanks for all the great ideas. I’ve been suffering from Fibromyalgia since I was in my late 20’s – early 30’s, somewhere around there. It’s been a long haul. It’s been a painful haul. Many times I’ve felt to give up, to lose hope, when hope was all I had. Unless you suffer from chronic pain, you won’t get it. I have a long list of invisible chronic illnesses that bring with them, chronic pain. Most of my days are spent in bed, and you are right, I’m getting weaker by the day. My muscles are atrophied. Now, I haven’t been in bed since my 20’s or 30’s. It’s been about 5 years, I hate to admit. About the only time I really get out of bed, just because it’s the most comfortable place, is to go to all the doctor appointments, at least 3 every week. I have a Tempurpedic bed, that we’ve had for about a year now. The head and the foot of the bed elevate, which makes it the most comfortable place for me to even sit. I don’t lie in bed all day, watching tv. I really watch very little tv, even though it’s always on for my white noise. Us ADHDer’s know what I’m talking about. Anyway, I do a lot of things. I just do them from my bed. I’m going to break out of this bed this New Year, starting in a day or 2. I’ll start out slow, for short amounts of time, to begin with. Last night, I actually got out of bed and went downstairs to the family room to ring in the new year. My dog is so funny, she was walking around with her tail tucked between her back legs because she had no idea what I was doing. It was something new and it made her very nervous. I hauled blankets, pillows, and everything I would need for the evening, down the stairs and I actually stayed down there til about 9:00 a.m. this morning. I do have to start making myself get out of bed, like I used to. I determine an amount of time I believe I can handle and then I set a timer and when the timer goes off, I get back in bed for 30-60 minutes. I set the timer, again, When the timer goes off, I get back out of bed. That’s how I used to do it and I’m going to start back with it. My main problem with the whole thing is that I have this ALL or NOTHING approach to everything………..I’m working on finding moderation. It’s not going too well, but I won’t give up. I do nothing at all, or once I start something, I do NOT stop until whatever I’ve started is finished. Then guess what happens? I’m in even more pain than I was to start with and then I have to pay the price for weeks and sometimes, even months! Chronic pain is difficult to live with, but I do find if I can get involved in doing something I truly enjoy, it takes my mind off the pain. Does it go away? No, but at least for awhile, I can forget about it. I can find joy, if even for only an hour. The key is to start out slow, baby steps, and work up to a decent amount of time to be out of bed, every day. I’ve read many blogs today, as I’ve been lying here in bed. LOL 🙂 this is the blog post that has inspired me the most, today. Don’t get me wrong I read a lot of very inspiring blogs, wonderful blogs, today. I just happen to agree with EVERYTHING you’ve said, here. So glad, I found your blog. Thank you for inspiring me to get up off my butt and do what I know it is, I need to do. I may be in a chair, but I will be getting out of bed. I’ll do some exercises, and we’ll just start with that. Getting out of bed and doing some form of exercise every day, I think is a good plan. I’ll determine the amount of time when the time comes to get up. I want to get to the point where I’m out of bed most of the day. This doesn’t mean I can’t be on the couch or in a chair. The goal is to be out of bed. I’ll add more goals as I accomplish these first two. Happy New Year! Take care. 🙂
Happy New Year my friend!
Wow! thank you so much for taking the time to share with me!
First of all let me say that I am sorry you are struggling in this way but I am so glad that you came across this post and felt encouraged to set yourself goals. For a healthy person, the task of getting out of bed might seem easy but we know it’s not that simple. I am so proud of you for committing to this goal, and I believe in you and have every faith that you can and will do it!
I can also relate to the notion of all or nothing. I have this quirk where I must finish anything I start and not doing it makes me feel like I’ve failed, to the point where if I think I can’t do something, I’d rather not try it and risk failing. This is something I am trying to work. Slowly, but surely we will get there.
Stay strong and feel free to stop in and let me know how you’re getting on! I’m really really happy and pleased for you! it’s a big step and I know you’ll make it! you’re not alone and I’m sure there are people in your life rooting for you, just as I am!
Gentle hugs:)
Alisha x
Hi Alisha, so glad to be meeting you today. I’ve written down the goals that you posted on your blog for yourself. I’ve written down your wordpress address, so I can find you and let you know how I’m coming along with my goals, and to check in and see how you’re coming along with your goals. I’ll be there to cheer you on. I just need another day or 2 to take it easy. I think I’m getting sick, again. Just finished a breathing treatment and everyone around me has been sick. I’m going on about 3 very restless hours of sleep. If I make myself do things when I’m not feeling well at all, like being sick, sick, germ sick!, I will for sure set myself up to fail and failure isn’t on my list of goals for this year. I accomplished that in 2015. no need to do it, again. I hope you don’t have trouble sleeping, but I’m guessing you do. So, I’ll be seeing you around. Feel free to stop in and check out my blog. I write about a lot of different things, but everything has to do with my journey, what it’s like to be chronically ill, to live in chronic pain, and all the other lovely things that go along with chronic illness(es). The roller coaster ride of emotions, you’ll see. One day I’m up and optimistic and then next day I’ve done a complete 360!!! Just how it is. Good days, bad days, and everything in between. I’ve found blogging to be very therapeutic for me. This February will be 3 years! When I started my blog, I had no idea what I was even doing. One of my therapists recommended it. I didn’t figure I would keep up with it, but I wasn’t expecting the overwhelming support, love, and kindness, that was to be bestowed upon me, just because I was sharing my journey with the world. I didn’t even think anyone would have any interest in reading a blog about someone they don’t even know. I had no idea. Blogging has been one of my greatest achievements because I kept with it, even when struggling to write. I love it and I can’t really ever see me stopping. I best attempt to get some sleep, so I will have to tell you goodnight for now, and I’m looking forward to walking the journey together. have a great night or day, whatever it is, wherever you are. Peace, my new friend. xxx 🙂
Hey Tammy!
Yeps I have problems sleeping too! I’m going to try and get some sleep now. Hope you have a good rest!
I’m really sorry to hear that you’re not feeling too well. Whatever you do take it easy and remember to pace yourself. It’s alright if some days we can’t work towards our goals as long as we stay committed and return to them when we can.
I was looking around your blog to see if I could subscribe (easier to get posts whenever you write something new as I forget alot) but couldn’t find the subscribe button. Do you have one? Will have a proper look around later today (I live in London so it’s now 5:40am) after I’ve rested a bit.
I can also relate to being up one day then down the next. It’s very difficult but blogging has helped me alot with that too! I was reluctant to blog and had to start as it was mandatory for my uni course I was doing years ago. But oh boy! it turned out to be such a blessing! Like you I have met alot of empathetic, caring bloggers all over the world who I’ve learnt so much from, some of who I even now consider friends. I’m really happy that throughout all the challenges you stuck with blogging! and another plus is that I’ve gotten the opportunity to meet up with you! thank you for your support:) we are so much stronger united than alone. Wishing you better soon. Hugs and love:) xxx
Alisha, I know other’s are following because I get a notification of every “follow” I get. I do see that you are following so, somehow, you must have accidentally fallen upon it without realizing it. Usually it’s in the upper left hand side of the page, but I’ve been seeing some in the lower, right hand corner. When you select follow it should give you the option to recieve an email every time I post something. You may want to check your settings. You may have that part turned off because I know I don’t want a notice of every single person I follow, every time they post. I had it set up that way in the past and my email was so over-flooded with email, I couldn’t even keep up with it. The people that I talk to on a regular basis, we usually see each other’s posts, but check your settings and if you want an email, it should give you the option to have it for one and not for another. Now, don’t get me wrong. I don’t mean that I don’t want to know when everyone I follow posts something to their blog, but I follow a lot of blogs, not only people that follow me, some people only follow those that follow them. I don’t really keep track of how many follower’s I have, as far as numbers go. If I like a blog and I want to follow it, I do not expect a follow in return. A follow, in return, is always nice, but not mandatory for me. Well, I thing we best, both, try to get some sleep and we can talk some more tomorrow or in a few days or whenever we’re both back on at the same time. I want to get back over to your blog and read some more. I just had a lot of catching up to do. This blogging is a full time job, just in case you didn’t notice. Sometimes I can barely keep up with replying to all my comments, which is, by the way, mandatory for ME. I maybe wouldn’t have that problem if I were on here as much as I used to be, but now that I’m going to have to be getting up out of bed, I’m going to have a little less time here, but more than I’ve been doing lately because I really miss all my friends here, when I’m away for too long. I’m glad to have made another friend, in you. I’ll be walking the journey alongside you. Okay, for real, now. Sleep………………let’s just try it and see what happens. Goodnight, my new friend. xx 🙂 Peace.
Oh thank you Tammy! I actually stumbled upon it not too long after asking you! lol
I totally understand what you mean about following other blogs. I treat it in the same way. I find following useful for keeping track of blog posts that are of interest to me and I don’t always return a follow, but in this case I did because I wanted to! though I often think I should do something but then there’s a disconnect between my thoughts and actions when I forget! hehe
I’m still wide awake but really going to try now to be sleep’s friend:)
Try to get some rest, we’ll chat soon:) Night my friend! (woohooo for new friends!:D) x
Yes, ma’am, I think we’d best get to sleeping. woohoo for new friends! Yay!!! Okay, seriously, for the 83rd time, we must sleep. Til tomorrow, my friend. Sleep well. Sweet dreams…. I don’t dream……..isn’t that weird? My REM sleep is delayed by over 3 hours according to the sleep study I had done, so if I only got 3 hours of unrestful sleep last night, no REM. for me, but that’s okay. I’ll leave all the dreaming to you. I hope they’re good dreams. 🙂 My eyes are barely open and I know my spelling is going to pot and my punctuation is doing the same. Rest, my friend. rest….. xx 🙂
Hey Tammy! hope you’ve had a great rest! I woke up about three times and went back to sleep as I do but up now and will be heading to shops soon.
That’s so interesting! where/when did you do that sleep study? I actually wanted to attend a sleep clinic as I’ve had lots of issues around sleep- of late I’ve started getting out of bed, running for the door! It feels weird because I wake up just as exhausted but I guess for me to be dreaming that much I must be having REM sleep, which is usu better after taking meds. Have a fabulous day my friend:) x
Hi Alisha, sorry, It’s taken me a few days to get back here. I went to the “back” doctor yesterday and saw the nurse practitioner. Next Monday, I’m going to be getting more injections in my back. Hopefully, it will help, at least a little. She said I can’t do physical therapy til we get this pain under control because it will only hurt me and I won’t be capable of doing it. So, hopefully, this next set of injections will help. By looking at my pain sheet I had to fill out for 7 days after my last injections, she said it let them know that they were in the right place and it did work because it showed immediate relief. It just didn’t last. Anyway, yesterday she took me off Flexeril and put me on a different muscle relaxer. I came home and got in bed to meditate and I fell asleep. Of course, I had taken one of the new muscle relaxers and I’ve been doing a lot of sleep. Still tired, though. I slept yesterday from around 1:00 p.m., maybe 2:00 p.m., anyway, sometime around then, til 9:00 p.m. when I woke up and took my bedtime meds, including another muscle relaxer and I decided to meditate. I like to meditate at least twice a day, it usually does not put me to sleep. Let’s see……………so at 9:00 p.m. I took the meds and laid down to meditate and I fell asleep, again and I slept til 1o:00 a.m. this morning. You would think I’d be well rested, wouldn’t you? No, no ma’am, I’m not. Still tired. Could go right back to sleep right now, but I’ve got some things to do, such as blogging. LOL I just had my primary care doctor, at the time, order a sleep study for me because I was so tired all the time. Myself and everyone else I’ve known to have a sleep study, has it done in the hospital. You go to the hospital at 10:00 p.m., the get you all prepped, putting all these electrodes all over your head. Can’t remember if they put them all over my body or not. I’m thinking they did, but I mostly remember all of them on my head because they use this stuff like vaseline or something and let me tell you, it took 3 days to get that out of my hair. I could wash, and wash, and wash my hair, that stuff wasn’t coming out and I have very fine, thin hair. I had to walk around looking like I never wash my hair. It looked super oily. Luckily I had it done on a Friday night. You could have other things besides delayed REM sleep, going on. You could have sleep apnea, and a whole long list of other things, and if no one can tell you what the report means, what good is it? When you get up out of bed and you are running to the door, are you asleep at first and you wake up while running to the door? LOL that’s kind of funny, but could be dangerous. I mean, would if you just kept right on going and went out the door and you weren’t awake? That would not be good. Maybe you should add another lock to your door, like one of those locks you see people with small children, putting at the very top of the door, where they can’t reach it and hope the kid isn’t smart enough to get a chair. LOL Maybe you aren’t in REM sleep long enough? Who knows, but it would be interesting for you to have one done and with what you are telling me, I don’t think you would have a problem getting your doctor to order a sleep study test for you. You get there at 10:00 p.m. and they kick you out, bright and early, whether you’re awake or not. I remember thinking, how rude was that, to kick me out at 6:00 a.m. After they put all the electrodes all over, they tell you that you can sit in the chair and watch tv til you’re ready to go to sleep. Then they watch you the whole night. There’s a camera on you and if you should wake up or anything they will see it and talk to you over a speaker to see if you need anything. It was interesting. I’m thinking you probably better get one done. Seriously, one day you may not wake up when you get to the door. I hope you had a good day, and sorry it took me so long to get back to you. Take care, my friend. I look forward to talking with you some more. I don’t always get on here every day, anymore, but I’m going to try to do better about it. I want to focus on writing more on my blog. I’ve been kind of slacking, for awhile now. I get very frustrated when I can’t write something that I feel is good enough to post. So, I shall see you around. Peace out! xx 🙂
Aww thank you Tammy! I’m so sorry I took this long to come back to you. It’s been incredibly stressful with having to move house. Haven’t unpacked anything- spent the entire afternoon cleaning!
I’m so sorry that your pain levels have been so bad! I really hope that you can find a solution that works and more importantly keeps. Afterall, what good is a painkiller if it relieves your pain but doesn’t last very long? Gosh you must be feeling tired. Usually when I’m exceptionally exhausted (though every day exhaustion levels are exceptional! lol) I sleep for longer hours, but like you, don’t wake up refreshed!
Wow! thank you so much for sharing that experience of doing a sleep study! where are you based again? because my GP is always reluctant to refer me for anything. Here in London doctors have to account for every referral so they are always resistant to it! I got into a big tiff months aback when my GP refused to refer me to a fibromyalgia clinic which was the only service that’s ever provided useful help to me. I can’t believe they kick you out at 6am! that’s cold and heartless isn’t it?!
Usually when I wake up, I am confused thinking, why am I standing here doing nothing? last time it happened I was nighting over at friend’s house for Christmas and all I recall is friend also staying in room asking me if I was ok. Next morning, I asked her about it because I wasn’t sure if I was dreaming (I dream alot!) or if it really happened. She said I was headed for the door but I don’t know why. And can’t figure out how I’ve managed to not bump into walls and things! My grandfather and cousin talk really loud in their sleep, so I don’t know if this kinda thing is hereditary.
Overall did you find doing the sleep study helpful? I wondered if that’s what you meant when referring to practitioners not explaining what study results mean. I’d find that annoying.
I can relate to being frustrated when I can’t write more. So much has been going on, my blog and writing have suffered terribly. We’ll get there though, one step at a time!
Chat soon my friend! can’t wait to catch up:) xxx
Hi Alisha, I’m in the U.S. and I’m on disability so I’m on Medicare and then I have a secondary policy. Luckily, I never have to pay for anything, except very small co-pays on my prescriptions until I’ve paid so much out of pocket and then for the rest of the year all my prescriptions are free. I am not lucky, though, because I am permanently disabled and I will never be able to work, again. I loved my job and the people I worked with. Sigh……………..I hate it when people tell me how lucky I am that I don’t have to get up and go to work everyday. I tell them that I’ll trade places with them and they can have ALL my diseases and conditions and I’ll be more than happy to get up at 5:00 a.m. to get ready for work and go to work and work full time.
I didn’t know you were in the middle of moving.
My daughter used to sleep walk when she was like in 2nd grade. It was so scary because one morning we woke up and she had gone downstairs in the family room, at the back of the house and the blinds were pulled up, so we know she was at the door. Have no idea if she actually went outside because the door was unlocked, too. Don’t think she did, though and if she did it would be hard for her to get out of the backyard because we have a 6 foot privacy fence and the gate on each side isn’t that easy to open when you’re awake. She always had her eyes opened and looked like she was wide awake. One time we hadn’t gone to bed, yet, and here she comes, down the stairs and I kept asking her if she needed something and her responses were so off the wall. She used to have to practice her multiplication every night because they would have these timed tests to see if they could get them done in 2 minutes, I think it was. We had the stack of papers, the actual tests for practice, on the kitchen table, and I was just messing with her and asked her if she was ready to practice her timed multiplication facts, and she said yes, and sat down at the kitchen table. I gave her the page and I set the timer, she had her pencil, I started the timer, and when the timer went off, looked at her paper. It was hilarious, she could always get them done in 2 minutes, but once they passed that one, the next one would be harder. Anyway, some of the answers she put letters. None of it made any sense. We got a good laugh. It used to scare me to death that she would go out the front door. Luckily, she never did. She looked totally awake and you would never know she was sleep walking unless she started doing something weird, like one time she was hanging over the edge of her bed, digging around for something, and I asked her what she was doing and she said she was looking for her bread and couldn’t find it. LOL She did that for a couple of years. She would do it a lot, for awhile, then it would be awhile before she would start in, again, and do it often, then have a period of time where she wasn’t doing it. Funny, but scary. I was also afraid she would fall down the stairs, but apparently you can see, but you’re asleep. The doctor told me to never try to wake up someone that is sleep walking. Can’t remember the reasoning behind that. She outgrew it and I hope she never does it again. She used to talk in her sleep, too. But, I’ve done that, just not often, like she did.
My sleep study was totally a waste of time because no one could tell me anything except that my REM sleep is delayed for over 3 hours. Every doctor even said, “I don’t know what this means.” Real helpful.
I think people with fibro, all have CFS. I’ve never heard of anyone that didn’t. It really sucks to be so tired all the time, but you kind of just get used to it. Nothing we can do about it.
I hope you get everything moved in and squared away. I hate moving. We used to move all the time because I liked to, but we eventually bought a house. Are you in an apartment or a house? I hope you really like your new home. .I’ve always heard that other countries may have free health insurance, but they get really crappy care. Don’t know if that’s the way it is in London, but here we pay a lot for health insurance, and usually get really good care. There’s always gonna be doctor’s that aren’t any good, so you just go to a different one. Since I’m on disability and I’m on Medicare, my premiums aren’t too bad. If I didn’t have a secondary premium, I would have to pay whatever Medicare doesn’t pay. The secondary insurance premium picks up whatever Medicare doesn’t cover. That really sucks that you can’t go to the fibro clinic. If you have fibro, why wouldn’t they allow you to go there? Ridiculous. So sorry. do you, at least, have a good doctor of some sort?
Well, you are probably sleeping. I don’t know the time difference, and I need to be sleeping, but I just wanted to check my blog, real quick. You know my real quick???? LOL 🙂
As you said, one step at a time, for us, and we’ll eventually get somewhere, hopefully. To not give up is key, and that’s not always easy to not do, but I’m really going to be working on that. It’s a waste of valuable time that I can’t get back.
Goodnight for now, my friend.
I don’t know if I told you or not, but when I went to the “back” doctor, I did find out he’s a pain management doctor. Anyway, I was on Flexeril, muscle relaxer, which wasn’t helping at all, so they put me on a new muscle relaxer and it’s been helping with the pain and I’ve been sleeping a lot. Still feel tired all the time, but it’s annoying to lay here awake while everyone else is sleeping and I’m so tired. Time for me to take my bedtime meds and hit the hay for the night. Talk to you soon, my friend. xx 🙂
Hey Tams! I’m glad you’ve got Medicare so you don’t have to pay too much on medical care. Here in England health care is ‘free’ but us working folks pay contributions towards it. The service is usually excellent but ever so often we encounter doctors who provide crap service. It’s been under alot of scrutiny lately with alot of internal problems that cause problems for us patients. Sometimes it’s just hit and miss but I’m still lucky I don’t have to pay everytime I go to the doctor or hospital because that’s quite often lol. I pay for my medication but thankfully found out about a scheme that I pay for annually and I don’t pay anything more if I am prescribed more meds.
I’m really sorry your sleep studies haven’t been helpful. It’s just awful if you can access them but can’t get doctors to tell you what they mean!
I’m sorry you’re so tired as well! I can definitely relate to it. But I think being on my own in a foreign country has really compelled me push my body to the limit as I don’t have any other means of providing for myself. If it wasn’t for that I don’t think I would have gotten to the point where I could work. And often it is problematic but I try my best and hope it works out. I don’t think people realise how much working can add stability to one’s life. For me it does, because I don’t have much of a social life so in a way work is a social thing for me too. Sometimes it’s the only time I get out. I’m terribly sorry you can’t work. I am happy though that you discovered blogging (so I could meet you hehe) but more importantly, because it provides an avenue for you to vent, share and meet other like-minded people. It mightn’t seem like much but it’s a big deal! I meet people all the time who go ‘wow’ when I tell them I blog. I’ve met other writers too who’d like to do it but aren’t brave enough and honestly it doesn’t require great courage because you are basically baring your soul to the world (to an extent) and exposing yourself to the many idiots out there in the world. I’ve had negative feedback too, as we will get from time to time, but I just hit the DELETE button and try not to take it to heart. They’re just opinions and weighed up against the many more positive comments we get, they don’t matter.
You know as you mentioned your daughter sleep walking and having her eyes opened, it reminded me of something. Years ago when I was living with a guy I was dating, he told me I used to wake up in the middle of the night, eye wide open and would be asking him questions. Initially he didn’t realise I was still sleeping until he tried having a proper conversation and I kept repeating myself. He said he’d put me back to sleep or tell me go back to bed and I’d just do it! Id wake up with no recollection of it. I always started rolling off the bed. Sometimes I’d wake up, other times he’d just to come get me or when I started living alone again I’d just wake up on the floor! really weird, but my experience has been that these things tend to happen to me more when I am distressed or anxious about something. I also realised I started having night terrors where I’d scream in my sleep or run, as in the case the other day. Hopefully it will stop or get better with time, my doctors have said.
In London, because housing is so expensive! unless you’re rich or have family or are in a pair and can afford to rent a property, alot of young professionals and increasingly, middle-aged professionals rent ‘shared’ properties. You rent a room and share kitchen and living room. In my case I rent an en-suite bedroom as I’m particular about cleanliness and won’t compromise on the bathroom. I was surprised when I came here to see how much smaller properties are as opposed to New York where they are much larger. (I used to spend summers in NYC as part of my family is there). but houses get much larger outside London, in the countryside and on the border. It’s ok here- it looks nice on the outside but it has it’s downsides and I may be looking to move when I get a chance.
Try to get some rest and I hope your body adjusts to the new muscle relaxer. Sometimes it does, othertimes it won’t so you may just need to keep searching till you find something that works for you. It’s a crazy ride with looking for the right meds I know. Sweet dreams my friend!:) xxx
Hey, hey Alisha,
good to hear from you. I’m glad to know that your health care is good. It’s that way, anywhere you go, as far as hit and miss. Not all doctor’s are good doctor’s, and are only in it for the money and don’t really care anything about actually helping the patient, especially if it requires a little more work on their end of things, getting you a diagnosis. I’ve been to a lot of bad doctor’s and as soon as I realize they are bad doctor’s, I move on. I am my own advocate. If I don’t advocate for myself, no one will. It took awhile to figure that out, and a big part of figuring that out, was running into “bad” doctor’s.
So happy you are still able to work. That’s one thing I really, really miss. I’m still grieving over a part of my life that’s been, forever, lost. It really bums me out, at times. But, I must accept it and make the best of what I do have because it’s not ever going to change. I just have to figure out, what it is I can do. After all, I’m not dead, yet! It could always be worse, right? It is what it is, right?
Your whole sleep situation is very interesting, to say the least. When my daughter was doing all that sleep walking and stuff, I tried to talk to doctor’s about it, because I didn’t know why it was happening or if it meant anything in particular. I never got any real answers. I’m glad she’s out-grown it with time. You probably will, too, at some time. Until then be careful, wouldn’t want you to end up outside!
Your living situation over there in London sounds very interesting. I didn’t know about that. What drove you to London, in the first place? If you don’t mind me asking and if you do, no worries, just skip this question. It’s all good.
About rest? Let’s see. On Monday, I had to go to the Surgi-Center to have injections into my back for Sciatica and Piriformis (you can look it up if you don’t already know what it is). Anyway, this was my second time About 3 weeks ago, was my first time having the injections, and there were no problems, no sedation. This time they asked me if I would like sedation, and I figured if they were offering it this time and they didn’t last time, there must be a reason why, so I said sure. I got there yesterday morning, was prepped by the nurse. She put the IV in my hand, as most of my veins are too small and full of scar tissue from all the IV’s I’ve had to have over the years. The anesthesiologist came in to talk to me before I was wheeled off to the procedure room. I asked him what medication they were going to use to sedate me and he said Propofal. Same medication I’ve had many, many times, with 14 surgeries, and all the other procedures I’m always having to have done. For instance, I have esophageal motility disorder and about 3 or 4 times a year, I have to have an EGD done to dilate my esophagus because it gets to where it’s difficult to swallow. They always sedate me for that. Every time my feeding tube has to be replaced, usually every 3 or 4 months, I’m sedated, and many other procedures I’m always having to have done. Anyway, I’m used to the medication and I’ve never had any problems with it. I had 1 hour of sleep, the night before, so I was really tired when I got there. The doctor said that because of the steroids they were injecting into my back, I may have trouble sleeping, I may have headaches, abdominal pain, and nausea. Some do and some don’t. I told him, I have all those symptoms every day, except for the headaches. So, I was slow to wake up after the procedure. I got home and I was looped from that stuff and the lack of sleep, here lately, I’m guessing. Figured, great, I’ll go home and sleep all day and night. NOT! I, of course, have to be the one to have all the side effects, of which I already have, but this is way worse than my “normal.” I was awake all day yesterday. I was awake all night, last night. Had to be at an 8:00 a.m. doctor appointment and another appointment at 11:00 a.m. today. By now, I’m really looped and I’m questioning myself, as to whether I should be driving like this. I drove, and I did fine. Got home from appointments and by now, I was really feeling super looped. I’m thinking they may have given me too much of that Propofal. I’ve been awake all day today until 6:00 p.m. when I decided to meditate and I fell asleep for 1 whole hour, while meditating. I’m still tired, but cannot sleep. I’m going on about a total of 3 and 1/2 hours sleep since Sunday morning. I forgot to say, that when I got home yesterday, I did sleep for and hour and a half. Looking like I’m going to be awake all night, again! He must have given me one hell of a dose of steroids! I’ve had steroids on many occasions for things like asthma and bronchitis and I’ve never had a problem with sleeping while on them, as long as I wasn’t already riding the insomnia train! Needless to say, I am delirious at the moment! Sigh……………….all I want to do is sleep and I can’t. If I go too long with no sleep I will snap, as would anyone else that went this long with so little sleep.
The new muscle relaxer is working, nicely. Fibromyalgia was actually one of the reasons listed on the drug information sheet, as to what it’s used for and side affects, and such.
The doctor that did the injections said it could take up to 3 or 4 days to get any relief, but I had instant relief, same as last time, but last time, it didn’t last. My back pain has been at a zero on the pain scale, ever since this last set of injections. Maybe this time it’ll last. If not, he said next I would be receiving an epidural. They have to get this pain under control in order for me to be able to get into physical therapy. He said I wouldn’t be able to handle it while in this pain, but I do need some serious physical therapy for my left hip and left, lower back. I, also, have many atrophied muscles, reason for “serious” physical therapy.
I’m having one heck of a time typing this because I’ve got band-aids on several fingers because in the winter time my skin gets so dry and cracks. I have all these painful, little cracks on several fingertips. They feel like deep paper cuts. So, on that note, I’m going to end right here, for tonight, but I shall talk to you, again, soon. Hope you’re having a good day. I’m assuming it’s daytime over there. Until next time, peace out, my dear friend. xx Tammy 🙂
Oh wow Tammy! I had no idea that on top of fibromyalgia you had to deal with all this other stuff! feeding tube, Sciatica and Piriformis and these cracked fingers! I didn’t know what Sciatica and Piriformis were so I googled them. It sounds very difficult! (big hugs).
I’m sorry you’ve been sleeping so poorly. I really suffer when I can’t sleep but I finally got my doc to change my meds and I’m now again on Amitriptyline which helps me to get some sleep (even if not restorative) along with my other meds.
Wishing you some great, sound sleep very soon.
It sounds like such an experience getting those injections! Really hoping your pain levels continue to improve too. I have a friend with a permanent feeding tube and I know it is tough for her, so I truly empathise with you.
I moved to London over 6 years ago to study for my MA. I always wanted to live here so I kinda knew I might have stayed. It was the easier choice (even if it wasn’t easy being away from my family), in a sense it offered me a fresh start. Has your doctor suggested anything for the cracks on your fingers? It’s not the same thing but when I was younger my acne was so severe I was on the strongest oral medication for it (Roacutane) and it caused severely dry lips, so my lips would crack and bleed. It caused me so much discomfort and after a little over half a year on it, I quit. Have you tried Cetaphil? I loved using it for deep moisturising but it’s different from the one I get in the US so I haven’t bought it in a while.
I know it must be hard not working. After I graduated, it took a long time for me to find a job and I was so ill I could barely manage and needed help to be lifted up in bed each day. Sometimes, ever so often I have days like those but I’m thankful I’ve come a long way. It made me feel depressed thinking that I might not be able to work. Perhaps in the future we can work on a project together. I find that doing something meaningful to make a difference really helps me when I’m struggling.
Try to get some rest and not to worry about replying when your fingers hurt.
I admire your optimism, it is something I have always struggled with. but sometimes I think about Stephen Hawkins who, even in his position, said that no matter who we are, there is always something that we can do. So i try my very best to make my time here on this earth count, in whatever small way I can.
I’m about 4 to 5 hours ahead of you (depends on the state your’re in I think). Week has been challenging so far but I try to take it one moment at a time. I am both excited and anxious working on my latest novel which I hope I will be able to release in a few month’s time. But I’d like to get back to writing my next work as I feel like time is so limited. But I still feel very unsettled and not sure how long it will take for me to feel stable in my new place, before I move again!
Anywho…will stop blabbing on now. Have a peaceful rest and I’ll chat soon. Anytime you like if it’s easier to skype so you don’t have to type you can just let me know! xxx
Oh also forgot to say that I totally agree with what you said on replying to comments. I feel it’s important to respond in a timely fashion cuz you just never know when someone really needs the support, among other things! x
Sometimes it doesn’t get done in a timely fashion, but it ALWAYS gets done. The only reason it sometimes doesn’t get done in a timely fashion is because I’m not on WP, but as soon as I find my way back, I reply to each and every comment, even if I’m just saying hi. It’s been a rough year and I’ve been struggling with a lot of things, other than my health. I miss my brother so much. He passed away on Sept. 1, 2014, unexpectedly in his sleep. He and I were the 2 middle kids of 4 and shared a special “middle kids” bond. I can’t even express how much I miss him and how sad I get, often, because I can’t call him anymore.. He’s not there on holidays. We had all of our little “inside jokes” just between the 2 of us……………… 🙁 I sure like the way that we keep saying we must get some sleep and an hour later, we’re both still here, and obviously not doing any sleeping. I really better give it a try before I snap. I don’t do too well with under 3 hours of restless sleep…………………..Once, again, goodnight. I’ll be back tomorrow. Have a good slumber. xx 🙂
Oh Tammy, Im so sorry to hear about your brother. It’s a terrible thing to lose a loved one. Just from the way you speak of him, one can sense the magnitude of love you have for him. I wish I knew what to say to comfort you. I think what comforts me is believing in an after-life. My belief-system aside, since I was a young child I struggled to understand why we are here, and though I never arrive at a answer, I always conclude that we can’t just be here to live this short life and then vanish forever. Hugs.
It is rather funny, us both saying we’re going to bed yet we’re still here lol. Sweet dreams my friend:) x
I’ll respond to this tomorrow since I just told you, about 2 minutes ago, how serious I was about really going to sleep this time……………………We better behave, now, and get some shut eye. Better get rested up for our chatting tomorrow. I’m a chatter, so beware, but I think I’ve found my match. LOL LOL 🙂 for real, real…………goodnight…………..:)
LOL, I promise I was going to reply to your last comment later today but I just laughed so hard when I saw this, had to let you know Im still reading your comments, while ‘sleeping.’ 😀 Have a good rest! 🙂 and I’m a very active dreamer! 🙂 Night Tams! x
I’ve been suffering from a back injury for months now, and been dosing my self with a lot of pain relievers. I’m starting to think that I might take away the pain of my back with the meds but at the same time punishing my liver slowly. So I started reading articles about marijuana and it’s medical aspect and found this along the way http://www.ilovegrowingmarijuana.com/cbd-in-medical-marijuana/
I’m already 34 years old and haven’t tried smoking or any other means of using marijuana and I have nothing against it. My question is that if I try it would I be dependent at the same time addicted to it? And will it really ease the pain? Thanks in advance to those who’ll answer.
Hi Peter,
Thanks for reaching out. Have you done physiotherapy? I found it very helpful when walking was very painful for me. With marijuana, I’m afraid I don’t know the answer to your question. I know of people in support groups who are able to get it medically in the US and say it helps. I know Morgan Freeman who also lives with fibromyalgia is a proponent of it and says it helps too. Of course, just as with meds, there is always a chance of becoming dependent on any substance. I hope you find the answers you’re looking for.