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.
- Find support
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 Ass groups are among my favourites.
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.
- Forget the haters/doubters
Everyone won’t understand or be empathetic. Some people will be unkind. That’s ok, it’s not a reflection of you, it’s on them. Let it go. Occupy yourself with managing your health better and focus on the people who care.
- Remember you are worth it
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.
All the best for 2016 my friends!
Gentle hugs:) x