fibromyalgia-awareness-day-2015
May the 12th is International Fibromyalgia Awareness Day and today, as part of that, I want to open up and be honest with you about how this illness has affected me. If you are a regular reader of this blog, you will know that I generally adopt a positive attitude towards life with fibromyalgia. I take each day as it comes, choose not to focus on my symptoms and instead think about the decisions I can make each day to feel as well as possible. This is how I cope living with fibromyalgia and I do think it is important to tackle each day this way if you want to live well with the condition. However, I also think it is important that people realise the full impact that this cruel illness can have on someone’s life. So I am stepping away from my usual type of post to instead take a frank look at how fibromyalgia has changed my life and discuss the things I miss the most as a result of this illness. I am going to try my best to avoid sounding as though I am complaining because I don’t feel as though negativity does anyone any good. I am simply going to share the truth and state the facts.

Fibromyalgia is something that crept up on me slowly and has steadily, over the course of a couple years, become more debilitating for me. I used to pride myself on the fact that I could do so much despite this illness. Unfortunately, pushing on through like that made my symptoms progressively worse. Fibromyalgia is definitely a condition that affects people differently; no two people suffer exactly the same. Some will find that they can function relatively normally. For others, fibromyalgia is a severely debilitating illness that impacts every aspect of their life. For many, like me, the illness will become progressively worse. I think it bears reminding that if you know someone with fibromyalgia and their symptoms are mild, it does not mean that someone else just needs to “suck it up and deal with it better”. We are all individual.

People with fibromyalgia are extremely resilient. We put on a brave face and say we are doing “fine” even when we are not. This can lead people to believe that it’s not that big of a deal. The way I see it is we have two choices: complain and be miserable or smile and get on with life as best as we can. I know I, and the majority, will choose the latter. Unfortunately the truth is that, even if we look okay or are managing to do what we want, it doesn’t mean that we are not suffering from symptoms. The vast majority will be in pain every single day. A good day just means the pain is manageable. For the most part, as soon as we get home, the mask comes off and we collapse! Often if we push ourselves to do something we will “pay for it” for days to come and will see a surge in horrible symptoms. Searing, intense pain from head-to-toe. Fatigue as though you have been hit by a bus. This is not just a case of being tired. The fatigue you can get with fibromyalgia makes it difficult to even function. At my worst, my husband needed to help me with everything: getting out of bed, dressing myself, washing myself. I literally spent all of my time in bed with the exception of going to the bathroom.


Thankfully, with help from Vital Plan, I am learning to make the changes I need to in order to get better control of my illness. I feel as though I still have a long way to go and, unfortunately, my fibromyalgia continues to restrict what I am able to do. However I am also, thankfully, far from the days of being completely bed bound by my illness. This doesn’t mean I am free of that forever though. If I do not look after myself I could very well end up back there. It also doesn’t mean that I no longer have bad days, I do. Flare ups still happen but I am doing my best to try and prevent them from happening as often.

In my attempt to feel as well as I possibly can, I have had to make a lot of sacrifices and changes to my life. Fibromyalgia has cruelly robbed me of many things and here’s just a few things that I miss most:

Being Spontaneous

I think this would top everyone’s list. These days everything is about planning, planning and more planning. Before, life used to be about making random decisions: going out shopping, going out for a meal or taking a trip to the cinema. If I got bored, it was simply a case of “what should we do?” and off we would go and do something. Anything. Now I no longer have that option. I have limited energy each day and also need to factor a lot of rest into my day. Every single thing that I do drains me of energy to some degree. Simple tasks like washing myself and getting dressed and ready for the day are tiring. Travelling in the car is exhausting. I sadly do not have the energy to spontaneously decide to do something on a regular day. It has to be planned. I need to spend as much time as possible resting (not only on the day, but during the days previous) so that hopefully I might feel well enough to do whatever it is I have planned. Even then, sometimes I am still too unwell to go.

Being Care-Free

This ties in with the above. With every decision I make, my health factors into it. I have to think about whether I would manage to physically do something, the impact it will have on me and if it is actually worth me doing. I have to think about “damage control” and plan rest so that I do not experience a flare up of symptoms. Activities generally need to be modified so they are less intense so that I can manage them better. Tasks need to be broken down into smaller, more manageable chunks. I often have to say “no”. I miss being care-free and not having to think about my health so much.

Eating Whatever I Want Without Repercussions

I realise that this is a superficial one because most of the time I do not feel limited in what I can eat. In fact, I eat a wider variety of foods now. However, every now and again, when I watch people tuck into something I used to enjoy I find myself wishing I could eat whatever the hell I wanted to without feeling terrible for it. As examples, I have given up wheat, dairy and cut out refined sugar (apart from the occasional treat, such a a couple of squares of dark chocolate). If I eat these foods now (or eat too much sugar) I feel awful for it and my fibromyalgia flares up.

Working Full-Time

At the moment, I am off work on long-term sick leave. This was a very difficult adjustment for me but I am unfortunately not well enough to work at the moment. I am learning that I need to put my health first but that doesn’t make it any easier to come to terms with. Fibromyalgia has robbed me of my ability to work full-time and time will be the deciding factor as to whether I will be able to return to my current job role on a part-time basis. It is something that is completely out with my control.

IMG_3987small

Having My Independence

Day-to-day I need a lot of help. I have limited energy in a day and struggle with sitting upright or standing still for any length of time. I find it difficult to keep on top of house work and some tasks cause me to be in a lot of pain. Cooking is something I find exhausting. I rely on my mum and husband for so much that I would be lost without them.

Travelling

I love travelling and exploring new places but this is something that has had to be sidelined for now. Travelling is sadly too exhausting for me at this point in time.

Using my DSLR Without Thought

I used to take my DSLR camera with me everywhere. Photography is my passion. However, lugging a heavy camera and lens around with me is not something I can do on a daily basis as it causes me pain. More often than not I take photographs with my iPhone these days. It’s just not the same.

Each Day Being Different

As I work towards feeling as well as I possibly can, each day seems to have blurred into one. There is a lot of sameness, which can frustrate me at times. However, I am hopeful that I will continue to improve and get back to a new kind of normal. One where I can do more of the things I want to and introduce more variety into my life.

break

My life has undoubtedly changed considerably due to fibromyalgia. I have been forced to make decisions I otherwise would not have chosen to make. I have had to give up a lot and life now has to be taken at a much slower pace. Planning has become essential to feeling as well as possible. Like I said above, I am very resilient and I choose to see the positives in my situation. After all, the only other option is to be miserable! I’m not saying I am happy and positive all of the time and I of course miss my “old life”! However, I choose to make the most out of what I do have. I am very fortunate to have a lovely home, amazing family and I am exploring new passions and finding different ways to enjoy life. Life is what we choose to make of it and in order to be happy, I have had to lower the expectations I have of myself. I am continuing to find new ways to be productive and I am finding a new “purpose”. Like I said at the beginning, I take each day as it comes and make decisions that help me to feel as well as possible. Life with fibromyalgia is certainly challenging but I am dealing with it as best as I can.

If you want to read more about what fibromyalgia is and what the symptoms of fibromyalgia are, please read this page.

Please help to create awareness by sharing your own story in the comments below. What do you miss the most?

Author

Hello, I'm Donna. I was diagnosed with Fibromyalgia in 2013 and started this blog shortly after. After my health declined significantly the following year, I decided to become my own advocate and searched for answers. It took two years but, in 2016, I finally discovered I had Lyme Disease. On February Stars, I share my personal journey back to better health; discussing what has helped me and the mistakes I've made along the way. I also cover topics on self-improvement, managing symptoms and living life to the fullest with chronic illness.

30 Comments

  1. While Fibro is not my official diagnosis, I have many of the symptoms, and it is likely a secondary illness for me. Before I was afflicted, I was an avid obstacle course racer and triathlete. I miss working out. I miss race days. I miss riding my bike. I miss running and generally being active. I’ve been avoiding going to the local gardens because I know I can’t walk around enough to really enjoy them, and I haven’t been able to let myself use a wheelchair because I don’t have a visible or constant disability.

    Two years ago I was running half marathon length obstacle courses up and down a ski mountain, now I am contemplating renting a wheelchair.

    • Hi Elspeth, thank you for sharing. I am sorry to read your story and hear of all the things your illnesses have prevented you from doing. It always seems to affect really active people, which I think makes it all the more hard to take. I appreciate where you are coming from regarding the wheelchair. If it helps, I wrote a post about using a wheelchair with fibro and you can find it here.

  2. I feel the same way about almost everything you said! I was a very independent person. I loved being active. I also love having a routine, and even though I try to stick to somewhat of a routine, I also know that I have to be flexible depending on how I feel that day. I also hate not being a dependable friend. I was that person that if I said I was going to be there I would be there, and I would usually be early. But now I don’t even like making plans with people because I have no idea what that day is going to hold for me.

    • Oh yes I totally get that. I am guilty of not making an effort to plan anything simply because I can’t cope with the whole maybe not feeling well on the day and having to cancel. It sucks!

  3. I think you’ve spoken for all of us with Fibro. If I had to use one word to sum up my life with FM, it would be “frustrated.” You’ve explained it all really well–thanks!

    • Thank you. Yes, frustrated definitely sums it up. I have so much motivation, determination and ambition, yet my body restricts all of that! Very frustrating!

  4. I love children and especially holding babies. But if they are over 10# I can’t unless I sit and someone helps me after a couple minutes. I have had this illness for at least 40 years and these last 20 it has just been getting worse. I hate the fact that I can start something and seldom finish it until days later and then I am too depressed to want to do it. I love to travel, but the trips are small and few. After, I pay for weeks but I just have to get away sometimes. Some of my family still thinks I over-react to things and that my pain can’t possibly be that bad. I just had a doctor yell at me and tell me to learn to say the Serenity prayer. I was with her for pain management for over 20 years. I wrote her a letter and no longer see her for anything. All this time I thought she understood, but I had been hearing from people in our Fibro group that she was doing this to others, guess it was my turn. Hope she learns the Serenity Prayer. I do paint Orthodox Icons which is a gift that God gave me when I had to take early retirement due to Fibro and arthritis. It is great because I can do it sitting and when I paint it takes my mind off myself some of the time. And yes, people even buy them from me. How great is that! Thanks for listening to me.
    Ruth

    • Hi Ruth, it’s difficult when we feel as though no one understands what we are going through. I am sorry that you went through that experience with your doctor and that your family can lack support and empathy at times. Please do know there are many who know exactly what it is like because we are going through the same too. That’s wonderful that you have found enjoyment and a purpose through painting. Keep doing it and selling them 🙂

  5. It is extremely frustrating. I curse my limitations every day. I often “push” myself and pay for it. I love working outside and I keep moving despite the pain sometimes. Of course, that always comes back to bite me! I try to do what I can in small chunks.

    • Hi Addi, yes fibro can be so frustrating for us active types. Pacing is a difficult concept to accept. I will be writing about pacing on the blog next week. It’s so important to do but I appreciate the frustrations. The “boom and bust” can become tiring in itself though. I am learning more about the importance of pacing and rest, through I wish I didn’t have to.

  6. Yes, yes, yes, to all of them for me, too! I was nodding my head with almost every sentence. For the most part I am positive about fibromyalgia. Like you, I don’t want to seem as though I am complaining or being negative. There are days, however, that get the best of me and I get mad or upset or just cry. I sometimes miss my life the way it was, but for the most part, I’m grateful I have found how to grasp hold of my illness and effectively manage it.

    I’m so glad to see you link up to Inspire Me Monday! I am now co-hosting another linkup on Sundays (opens Saturday evenings). We’d love to have you link up there, too!

    • Thank you Brandi. It’s always good to know I’m not alone in how I feel. Thank you for introducing me to your link ups, I try my best to remember to add my link 🙂

  7. Thank you So much for this post Donna. It is encouraging to me to hear that someone else’s Fibro has gotten worse with time. (That doesn’t sound right, does it? But you know what I mean). I know I have had this illness for YEARS, but since my hysterectomy last year it has definitely ramped up. I don’t know why, but it makes me feel good to hear from others out there who KNOW what this ‘day to day’ is like. It is difficult for those who don’t have FMS to understand why we never feel ‘good’ anymore. I truly appreciate bloggers like you and Brandi (above) who share their struggles, I have started to do the same on my blog~ alifewellred.com Fight On! 🙂

    • I know exactly what you mean Kristine. It’s scary when your health deteriorates, especially if like me, you didn’t realise it was a possibility of happening. It is always great to connect with people going through the same things so thank you for reading and commenting. I hope you find blogging as helpful as I do 🙂

  8. Faye Savory Reply

    What a fantastic post Donna! This is a brilliant insight into life with Fibromyalgia and amazing for raising awareness. It’s incredible that even when highlighting a lot of the heartbreaking realities of such a debilitating condition you still manage to get across your positivity. Your posts are a real testament to your courage in the face of very challenging circumstances. Lots of love xxx

    • Thank you so much Faye, I am so pleased my post came across as I intended it to 🙂 There is no getting away from the fact that fibromyalgia is a hellish condition to live with but I’ve come to realise that, though I might not be able to control my fibro, I can control how I react to it. I do of course get down from time to time but I have also realised that I can still enjoy life and get a lot out of it despite fibro xx

  9. Your post hit the nail on the head! I don’t necessarily miss working full time as I felt so unwell (my fibro got mushed with CFS in my last year of university so i never knew full time work without deteriorating health) but I’d do anything in this world to avoid living like that again. But now I have a baby, I’d give anything to be able to work part time and look after him comfortably. Thanks for your encouraging posts!

    • Sorry to hear about your deteriorating health Melissa. Yes it is horrible when you feel like you are struggling and feeling terrible because of your health. I guess by that point I just meant I wish I could work full time without it having any impact on my health. At 28 I never thought I’d have to consider not working full time. It sucks! Thank you. I think you are doing amazing if you have a baby to look after, that is a full time job in itself and I always admire mothers who have chronic illness. Take care.

  10. I was never what you’d call active lol. I didn’t like sports ay all. But oh my what I really do miss is hours long rambles with my dog. I have always had a dog even from young and would be about and about for hours with then, only coming home when I was hungry. I also miss having good friends. I found that I have dissuaded friends over the last few years and ensured I didn’t make any new close ones. WHY you ask (slightly assumptions of me but sure you did). Because I hated always.letting people down. I gave up my work for the same reason.

    • It’s always horrible dealing with the guilt of cancelling plans at the last minute. I am guilty of not planning anything these days because I hate having to say no at the time. So I empathise with you on that one.

  11. I have had Fibro for over 20 years and am finally on disability. I also struggle with other health issues that appeared after the Fibro. The health issues just seem to keep coming at me on all sides. I have lost most of my friends (I guess they were acquaintances as good friends would not abandon one) due to not feeling well and being unable to participate in many activities. This chronic illness has affects different parts of my body on a daily basis.

  12. I’ve had F.M. since I was 16, and I’m now 55. It started after a severe car accident. I was very active prior to the crash; the first one up and the last to go to sleep. The symptoms began right away and became gradually more intense until 1992 when I had to stop working. My flare ups were often but I still had some energy ( not as much as before). I exercised until 3 years ago when everything hit me like a ton of bricks. The energy is depleted and the pain is at its worst since. Doctors told me that it wasn’t a progressive illness but I now know the difference. He also told me that the people with fibromyalgia are deconditioned…..but I always exercised! My 36 year old daughter also has F.M. She has a son. I sure hope he…….

    • This sounds too familiar. I was very active until I hit that wall & completely crashed. I am slowly trying to build up again. It’s a catch 22, I am deconditioned because I have been forced to stop by my body but it then becomes a struggle to get any fitness back because of the fibro. It’s not progressive in the sense that anything physically worsens in our bodies in the way a disease would but, from my experience, the symptoms certainly can become worse. I am also learning though that it doesn’t mean things can’t get better again

  13. Thank you for this honest post. I believe I have fibro, but 2 different doctors have pooh-poohed me. A month ago, I went gluten and sugar free. Has made a BIG difference in how I feel
    Melinda

    • Hi there, unfortunately it can take a lot of time to get a diagnosis and many doctors don’t even believe in it sadly. That’s brilliant you have made a positive difference to how you feel. My advice would be to keep doing your research and trying things to help but I would continue to see a doctor to get a diagnosis. I say this because fibro shares symptoms with many other conditions and it should be diagnosed only once other conditions are ruled out. So I would be pushing your doctor for an answer.

  14. caroline sutcliffe Reply

    Hi everyone.
    completely new to this so plz bare with me. I was diagnosed earlier this year with fybro but had sufferd for 3 years with a mystery illness…what i miss the most,apart from things like sleep lol is me,the person i usrd to be,active,independent,ive always worked but will soon be giving up due to the pain,memory loss to mention two of my daily symptoms.i was recently aearded dla or as its now known p.i.p,i broke down during my assesment and told my assesor,i just want my life back,but i know thats not possible,so onwards and upwards it is then.i think im only just coming to terms with the illness and what it means for my family as well as my self.xx

    • Hi Caroline, thank you for taking the time to read my blog and for sharing what you miss the most. Acceptance is so difficult and it’s something that you will probably have to continually work on. I know exactly what you mean, it does feel like you have lost yourself to this illness. It is possible to improve how you feel– I’m living proof of that– but it’s not easy and it’s slow progress. Although losing work is a grieving process you will need to go through, remember that change can bring with it many positives and I hope you find your condition improves when the stress and strain of work is taken away.

      It’s great you were awarded PIP. I know just how stressful the process is but unfortunately I wasn’t lucky with that. I would suggest you also look at applying for ESA if you haven’t already as that would also help you financially.

      I hope you find my blog helpful and I wish you all the best. Take care.

Write A Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.