Challenges

Shut down by the Fibromyalgia monster

potofcallaloo January 7, 2015 68 Comments

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“Are you alright Alisha?” I heard the voice in the distance ask.

After what seemed like a long few seconds I was able to lift my bopping head and respond.

“I am ok thanks, I just need to let it pass, it will pass” I said. Really trying to reassure myself.

Fibromyalgia was doing it again.

I had been sitting at my desk plugging away at the work when my body started shutting down.

My manager was sitting next to me at work when she saw me slump forward.

Knocked out by fibromyalgia

I hate this bloody illness.

This has happened at the most unfortunate and embarrassing times. (I will share the stories another time).

The chronic fatigue associated with fibromyalgia is extreme. It is debilitating. The kind of debilitating that makes it impossible for many of us to work and complete what we might all consider basic, everyday tasks like showering, changing, cooking and socialising. Basic parts of human life.

Bloody, freaking fibromyalgia.

Sighs.

I am fortunate to have had some of the most understanding managers in my work life.

“I found myself looking through your blog with great interest” my boss had said to me earlier in the day.

That moved me incredibly. Because I know what it is like to live with an invisible disability. People with invisible illnesses are often judged harshly.

“Lazy” is a word used to describe many of my fellow fibromites. It is hurtful.

People simply have NO idea.

No idea what it is like to be in the middle of a task one is determined to finish with excellence, to the best of one’s limited ability, only to have one’s body shout “No you are going to stop, shut down NOW regardless of where you are, who you are with or what you’re doing.”

Good Lord, what a day.

I pray for patience and determination to push forward in the face of this invisible, all consuming monster that is fibromyalgia.

Be strong.

With love and empathy,

Gentle hugs:)

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68 Replies to “Shut down by the Fibromyalgia monster”

  1. I truly enjoyed reading your post, as I can definitely relate. My body seem to always shut down. One day last week I woke up and could not get out of bed. Felt like I was in traction. I couldnt raise head without spasms locking me up. Finally after about an hour, I managed to re-situate myself in bed where I was at least sitting propped up. My feet, however had still not touched the floor. Then, another day I was so eager to finish my article of which I only had one day left before it was due. In the middle of my editing it, my whole mind and body had another idea. I became so fatique as if someone shot me with an antidote of a tranquiling substance. I could not focus to finish my article that day. I was in bed the rest of the evening. Its called fibro-fog I suppose. But who really believes us other than our fibro friends? Keep sharing your experiences, this is what helps us feel that we are not alone.

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    1. Thanks so much for your encouragement and support. It can get really disheartening as this is such a crippling illness which hits us from every side. Even worse when people don’t believe us.
      You’re absolutely right. It makes a big difference to know we are not alone. Thanks for reaching out. Hope you’re well now xxx

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      1. …..also, we phaps need to stop calling it the invisible illness?
        If ppl can’t see what happens to us with it, I think they must lack intelligence or reasoning. M. 😞

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      2. Hello Alisha,tried to find info on the Awareness Project. Got a bit confused. Is it based in New Jersey? Am certain that it will be very good. A quick question; when I was alot younger,I was taken into Hospital with terrible pains in lower abdomen. I was all shaky and shivering….do you think that it was connected to the Fibromyalgia? Bye bye for now, Alisha,pls take care. Kind regards.

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        1. Thanks Lillian:) It’s the last post I wrote and it’s about a documentary Im going to do to raise awareness of fms.
          http://theinvisiblef.com/2015/01/29/a-project-to-raise-awareness-of-fibromyalgia/

          Those symptoms could have been associated with fibro. I’ve always gotten terrible tummy pains. After I was diagnosed with fms doc told me it was caused by irritable bowel syndrome which is a symptom of fms. I shiver sometimes but my body is weird in that sometimes I cannot decide if I am too hot or cold. My body might be warm and my hands and feets might be ice cold, and sometimes my arms get cold too, even in 32 degrees celcius! Do you still struggle with those symptoms LillianMary? I hope not. Keep well. Love Alisha

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    2. Hi. I can def relate. I have been in our room for days. Want so much to be free of this. Its,all consuming. Pls be assured of my kind wishes. M.😞

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      2. I hope the same for you too. Its been since 1990 that I was diagnosed and it has been a lifetime of pain for me. I can only imagine what it would feel like to not have pan. I still have that hope and prayer, because in reality — that is all we have. Blogging back and forth with others who suffer with the same problems, do help a lot. Let’s stay in touch.
        Barbara

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        1. Thanks a lot for sharing Barbara. It’s powerful what you’ve said, and I too believe there is power in hope and faith. You are right that these are all we have. Let’s not forget love:) We live in hope. Have a great Easter break. It’s one of my fav times of year. Chat soon:) xxx

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          1. Yes you are right. We cannot forget love. Love is the reason that we are all here and given another chance and opportunity to acknowledge the power of our heavenly father, and his omni-presence.

          2. So true Barbara. Love IS the reason. And I think there is a certain power behind people like us suffering and still being able to share this love. Hope you are well! bless you! x

          5. Im okay. Just dealing with this crazy pain. I will share with you some divine revelations that I received regarding this pain. I am at work now but will send you another message later. Take care.

          7. Hi Again, well I am still at work but thought I would take a moment to catch you up. I guess I am ok, and should not complain so much. For awhile there I thought I was doing wonderful because I have not been complaining about my ailments. I have been praying for months now, asking my savior to please remove these doubts from my mind about my having a dealthly illness on top of my fibro. Been worrying about if I have MS or ALS or some blood disesease. They cant seem to find out whats wrong with me and I have symptoms of these two diseases. I have been worrying myself sick. I know that all things that happen are in divine order and I know there is nothing that I can change. Our creator has already set in motion what is and what will be with every creature that he created and placed upon this earth. Its because we are still in a physical body and we hope to not have to suffer or die soon, but we all must die one day. We were all born to die. Everything dies. Sometimes, its hard to face these realities. So, as a result I have had numerous fibro flares since we last talked. I have been so depressed with myself and my thoughts. I have been trying to be still and wait on my savior to give me what I need and calm my anxiousness and anxiety about my condition and whatever else I have. I am not sure if you read my latest post about the tingling, vibrations, etc. If not, please read. I have been the rock for many years in my family dealing with pain so well as I was called. Now its not so much as the pain, it is the worry of “if I have other issues” or not. So, I know that my savior is real and that he is in me and will take care of me. Sometimes the boat gets a little shaky and we think we are gonna fall off. I know that we can never have too much faith and this is what I pray to have more of, to stabilize my life.
            Enough about me, I hope all is well with you. How has your fibro been lately? I tell myself all the time — breathe in and breath out. When I breathe I listen to the name Yah-Weh, and it seems to calm my thoughts down. I know it probably dont make sense to you, but I breathe his name everyday. I would not be alive if I didnt.
            Talk to you soon. BB

          8. Hi Barbara,
            Thanks for your message. I am truly sorry that you are having a rough time. I pray that all will be well. I know everything dies eventually, but we are also called to live to fulfil our purpose and we do not leave this earth until it is done. I know because I tried so hard for many years to take my life and lived even when doctors said I shouldnt have survived. It is so hard when we cannot see what tomorrow holds, whether you have another ailment or not… it is hard because our vision is limited to here and now. But I am always comforted when my friend reminds me that God sees the end from the beginning. The whole picture, so He knows it will all be fine. I will go have a read of your post. Thinking of you my friend.
            I have been struggling alot with depression and where I am at in life. I have been looking for a full time job for a long while now and things are hard but I continue to hope and pray that this season will end soon for a better one to begin. I will keep you in my prayers. Hugs and love xxx

          9. Hi Alisha, thanks for your reply. You are absolutely correct, we are all called to live and fulfull our purpose, and after its done, we leave this earth. It happens to everyone. I am just so grateful to have this opportunity to still be alive to learn all I can about my heavenly father Yahweh. I am forever greatful. Regarding your depression, how do you know when you are depressed? I dont know if if I am depressed or not, maybe I am. I am more fearful worrying about what I might have. I wished I could cry sometimes to help relieve the stress but I cannot cry because of this eye disease that I have. I hope your depression gets better and that you do not try the suicide attempt anymore. Life is worth living, even though sometimes it might not feel like it. So hang in there.

            Also, I did not know you wrote a book about fibromyalgia too. I did also. You can see my book at https://www. thepainfulrealityoffibromyalgia.yolasite.com.

            How did you set up your Kindle edition? I want to do this for my book. I have been meaning to check it out but keep forgetting. Let me know how you set it up.
            Thank you, and hope to hear from you soon.

          10. Hi Barbara, no worries:)
            Thank you for your kind words of encouragement:)
            Depression is sometimes hard to pinpoint, it’s just here and often we don’t even realise it. It’s more than just feeling sad about something. It lasts much longer. But events and traumas in our lives cab trigger it too. If it’s going on for a long time, several months, an affecting your daily life, like your weight, getting out of bed, thinking clearly, your mood etc then it could be depression. This Mind page might be useful in explaining what depression is about : http://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/#.Vcyr-7JViko
            What eye condition prevents you from crying if you don’t mind me asking? Yes I have written a book about fibro. You should check it out. I am wondering, do you think I should place it somewhere else on my page? because if you didn’t notice it chances are other people won’t either.
            I set up the kindle edition myself. It takes a little while but if you need help I can guide you through. I will msg you the link.
            Thanks Barbara, cheers! xxx:)

          11. Hi Alisha, thank you for replying. Yes please message me the link, and Yes I want you to help guide me. Regarding your book, yes I will purchase it and Yes it needs to be on your site. I was not even aware that you wrote a book until I clicked on your site itself. You should have a sample actually on your blog. Your book really looks good.

          12. Thanks Barbara:) I don’t have an advertising budget so I can only afford to promote it on social media. I will try to get a sample up, thanks Barbara:) need to try opening the link for yours again. It didn’t work when I tried the other day x

          17. Oh yea, I have Sjorgrens eye disease. My eyes hurt everyday and feels like I have sand in them everyday. It hurts in back of my eyes, temples, eyeballs, etc. They are chronic dry eyes, not just regular dry eyes that everybody gets every now and then, but chronic – whereby i have to use drops everyday, and special creame at night overnight.

          19. No, it is another autoimmune disease. Once you have autoimmune diseases u r subject to get others. i never know what I will have from one day to the other. I feel like I live in fear everyday. This is what I pray to stop doing.

          20. It is sad Barbara. I also have this worry, but we are not called to live a life of fear but one of love. I hope that we can realise our greatness and press on knowing that we are perfected in love and all will be well, somehow in the end.

  2. Yesterday I had an appointment with a new doctor, a rheumatologist who actually treats fibromyalgia as a REAL condition. So many doctors don’t even believe it is real. He explained specifically why I have terrible pain around my hip joints or my knee joints sometimes, and other times I have no pain at all. He gave me some treatment options. I am so happy that a medical professional actually believes my symptoms are real and understands that I can function fine sometimes and other times (like the past few days) have flares that make me feel horrible and crippled and not want to get up. I was diagnosed with fibromyalgia 25 years ago, and this is the first doctor I have trusted to deal with the condition plus my arthritis. Even the doctor who diagnosed me treated me as if it was all in my mind.

    I hope you are doing better. As I’ve said before, hang in there! I will be thinking of you!

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    1. I am so glad that you have found this doctor my friend. It is a rare thing that so many of us are still searching for.
      Surely one can see why so many of us also suffer from depression too. It is not easy living this kind of life.
      But I am lucky to have friends even online like you, who support me. It means everything.
      I hope you will be better soon too. I am on a steadily low rollercoaster that sometimes crashes. Not nice but I still hope. Thanks my friend, hugs xx

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    2. Hi, I am so glad u have found a doctor who believes in your condition. I have had fibro for 26 years and have been to 1 rheumatologist who initially diagnosed me in 1999. In 2009 I was laid off and could not afford him, so I saw no docs till about 2011-12. I began going to a walkin clinic so I saw different residents who had no compassion or interest, just concerned about graduating. I still dont have a regular doc. I want a doctor who believes fibro exists and care. I live in southfield Michigan. Ask your doc if he knows a fibro doc here. I have looked online and they only refer neurologist or rhuematologist whom of many I have already seen, they are too insensitive. They act as if theyare afraid to touch you. All they do is ask u questions about how u feel. Nothing else. So I have to find a fibro doc.

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      1. I will see what I can do. My experience is that older doctors are the most insensitive. I can see that residents also would be that way. I thought a female doctor would be the most compassionate, but that proved not to be the case. The new doctor I have is a younger rheumatologist, a man, and he was quite nice and took time to listen.

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        1. I had the same experience here in London. I found that younger doctors were more knowledgeable and compassionate (when I saw a rheumatologist at a fibro clinic years ago). Let us know how it goes in finding a doctor Silence x

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  4. My friend drew my attention to this site. She’s also a fibromyalgia survivor But is in such debilitation atm and doesn’t feel able to reply so I will on hers and my own behalf. She sends gentle hugs.
    On the subject of depression; mine seems to have got worse. Its soul-crushing.
    I have lovely family around me.
    But what about the lonely ones?
    This is why pls continue with the good work.
    You will help so many.
    Kimberley.😊
    Thank you.

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    1. Thank you so much Kimberley for the kind and encouraging words. It is often so hard to carry on but knowing that our efforts, however small, make a difference to the lives of others is deeply encouraging. Stay strong:) xxx

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    1. Thanks LillianMary, really appreciate it. I haven’t tried it but a friend of mine has and said it helped alot. There are so many supplements I still want to try but many of them are very costly. I really want to try CQ10 for my energy levels. Hugs x

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  9. Also, when ppl don’t seem to have the ability to understand the pain, exhaustion,depression,clumsiness,dizziness,nausea,lack of sleep,proper good old-fashioned sleep,hang on in there. We must. For each other. Gentle daily battles.💝

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  10. Good day and keep fighting. Depression and pain can take over, we must not expect too much of ourselves,we are soo limited. The pain & exhaustion,etc,bound to have an effect on our mental health. Take good care.

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    1. Goodday to you Lillian; you are absolutely right.
      I also live with borderline personality disorder and it causes me to have very high expectations of myself, while fibromyalgia restricts me so much. So many of us with fms also have depression too. An uphill walk but one day it will be over. Have u read about the awareness project Lillianmary? What do you think?

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  11. Dear Alisha, your blog is wonderful. I wish u lots of success with it & your projects….you are a very brave & highly intelligent young woman,anyone who reads what you write can see that. I am going through a terrible time at the moment, just in case I don’t get to write for a while…..remember, DO Not GIVE UP! EVER!
    I have a very strong faith in Gods word & believe that one day there’ll be no more sicknesses….Rev 21….till then,hold on,you’re doing brilliantly.
    LilianMary xxx

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    1. LillianMary, your words have really moved me, thank you for such strong encouragement. I am really sorry to hear you are going through a rough time. I will remember to pray for you. I want to share this song with you, to encourage you as you have encouraged me. We don’t know what will come tomorrow but we can only trust that all will be well because our Father sees the end from the beginning. I forget alot and I despair but thankfully I have friends who remind me. Please don’t hesitate to contact me if there is anything I can do to support you. With lots of love xx
      https://www.youtube.com/watch?v=dy9nwe9_xzw

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