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I was diagnosed at 22 with chronic fatigue syndrome. It had taken 2 years of back and forth testing and different Drs and more testing, before the diagnosis. From the diagnosis I wasn’t offered much. “Rest” and “exercise” was about it. 

 

Now, although me taking care of myself (rest) and me working out (exercise) is working pretty well for me at this point, it’s actually poor advice. I’m “better” in the fact I’m still exhausted some days, still in pain every day, it is a lot better and I can do a lot more than previous times in my life, hence “better. But back to my poor advice point. A medical professional advising someone with CFS to rest and exercise is worse than useless, it’s actually pretty bad and impacting. Because it’s not that simple, and for some people, and at some points in my life, exercise was the worst thing I could do, and rest doesn’t mean you’ll be energetic. It actually made me depressed. 

 

It’s HOW you rest, and HOW, you exercise, and working out if you should at all. That’s been the key for me at this point, but, that’s on top of 17 years of understanding myself, my chronic fatigue and my mental health needs, that’s gotten me to this point.

 

 

Now, “wait” I hear you cry. “I thought you were raising money for Fibromyalgia Action UK? Why are you talking about chronic fatigue syndrome, you’ve not even mentioned fibromyalgia!?” and neither had the doctors. In all those 2 years, and for years after that, I didn’t even know fibromyalgia existed. Eventually, after a few more visits over the years to medical professionals, and still not getting much in the way of advice, let alone understanding, I was trapped and pretty unwell. I was in what I later found out is a “boom and bust” cycle. Basically, I was going all out, trying to live my life, then having massive crashes. At one point, I was putting holiday in when I felt a crash coming, desperately trying to make it to that crash and then sleeping and doing very little for the “holiday” As you can imagine, with a chronic fatigue disability, this isn’t a good idea, and you basically “bust” yourself. 

 

Come 2010, I’m off work on disability benefits, living with my parents (important later with benefits system.) This came after a pretty stressful job, which heightened underlying anxiety (undiagnosed at this point) and made the boom and bust cycle a bad one. 

 

My memory of this time isn’t great, so I’ve done my best to get a decent timeline of events. But after about a year, still off work, not getting better (probably getting worse with mental health as well) I went to the Dr and was referred to a group, to support chronic fatigue sufferers. In the lead up, you go through the diagnostic process again. With invisible illnesses, like CFS and fibromyalgia, drs make mistakes or miss things, as you’ll see with me. It was from this group and the diagnosis phase, that I first learned about fibromyalgia and eventually got diagnosed. Same symptoms and issues I 1st brought to Drs at 20 years old, at nearly 30 years old I found out what I had! Officially, I’ve chronic fatigue syndrome and fibromyalgia (with generalised anxiety disorder thrown in for some additional fun!) But for 10 years, I had no idea I had fibromyalgia. To be fair to the Drs, at 20 years old, I was so exhausted and young, they didn’t think (or didn’t know) to ask questions about temperature control, pain, sluggishness, brain fog, sensitivity to light and touch, which can be linked to CFS, but are fibromyalgia linked as well. Personally, at this point, I feel I’m more fibromyalgia than CFS, so my initial diagnosis was pretty far off. 

 

From that point, I was in the group, which taught me about boom and bust, pacing, looking after yourself etc. A further part of it, was therapy, around how to manage with a lifelong disability. This is where I got very lucky. The therapist is still my therapist now. Though less intense now, and more around discussion and education (hopefully to and from) I have a therapist if/when needed. But what she did initially, is to understand that there was underlying mental health needs and personality traits, that came from me being bullied early in life. So though we did do some work on how to manage a lifelong disability, the main work we did, unpicked behaviours I had developed in response to the bullying, that were becoming detrimental to my current life (I wasn’t being bullied or in danger anymore, in fact the bullies were now friends) now, it’s hard to unpick 15+ years of someone using techniques they developed in trauma (hence the reason I’m still working with her now) but, these techniques, to manage anxiety (and actually have anxiety diagnosed) are what I’ve continued, on and off, to work on with her, as I said, to this day.  

 

These techniques have really given me a life. Less stress, or the ability to manage stressful periods, but also working on guilt, the idea I  saw selfishness as “bad” (which makes looking after yourself really difficult) and my therapists ability to challenge me and my thought process, while supporting me to work out if I want to change or am happy with that “trait” has led me to where I am today, and had a big impact on both CFS and fibromyalgia. I’m still working, and still having to manage fibromyalgia, anxiety and CFS, on a daily basis, but it feels manageable and the techniques from the group, the therapy and myself, have come together rather nicely. 

 

I have to say at this point, it started with the support of my family. Without which, I wouldn’t have even gone to the Dr in the 1st place, and then further down the line, with my wife and kids, wouldn’t want to continue looking to improve my life, which is basically my mental and physical health. And why I got back in touch with my therapist a few years back to go into some intense therapy. 

 

My wife, has been a rock. I know it’s not easy for her either. Shell has seen the person she loves, at some very bad points. Writhing in pain and hospitalised on a number of occasions, due to pain medication not working (cause unknown, probably a virus) probably the worst, but also the depression, anxiety and the inevitable grumpiness daily pain causes, have to have affected her life, as well as my own. I won’t go into my worries about the affect my disability could have on my children, as frankly, it’s too upsetting (and something I still need to work on! Shell’s had to learn, alongside me, on what my disability means. I know it’s hard for her to understand, because it’s hard for me to explain. But she accepts me for who I am, disability and anxiety (and antiques buying obsession!) And for that I’m eternally grateful. 

 

What’s this got to do with raising money for Fibromyalgia Action UK? Now, although I haven’t used the services myself, I was already past that point by the time I had heard of them, if you look on their website at what they offer, as a charity and service, a lot of it would have been helpful to me on my journey and I want that for other people with fibromyalgia. It will probably also become a useful support service for any future “blips” I may have, or new information around fibromyalgia in my future. 

 

People shouldn’t have to go on the journey I have. As I said, without my family support, I wouldn’t have made it. They got me support and help (which includes contacting my therapist multiple times over the years to get back into therapy, to the point we now just stay in touch permanently, as it’s easier that way!) My worry, is people aren’t as lucky as me to have that support network. Fibromyalgia Action UK could be the support network people don’t have, or additional support and advice, which could mean the right support is there earlier. Myself and my family have had to do a lot of research and trial and error into different things – this has been hard for me. Part of the gap in seeing people was because I couldn’t face the disappointing “nothing can be done” which was a big part of my early encounters and gets disheartening, so I went into avoidance mode and hiding away (this is where my family really helped) 

 

From the big list of support Fibromyalgia Action UK offer, these things stand out as would have been useful to me and my fibromyalgia journey: 

 

1) Benefits support and advice – when I went back to work, it wasn’t because I was ready, it was because I was forced to by having my benefits stopped. The benefits system when I was in it, was poor. I suspect it is even harder in these times. With illnesses like fibromyalgia (and other invisible and fluctuating long term illnesses) the benefits system just isn’t set up to fairly assess and understand these illnesses. When I was assessed, I was judged as disabled, but it was very taxing and frustrating. Every question pretty much wanted to know how I am, now with FM, this varies day to day. On my worst, I’ve been in bed or on the sofa for days, unable to walk too far (round the block with my son in his pushchair could wipe me out) At my best, I can ride a bike with my kids, or cross train the length of Hadrian’s Wall! I’m still disabled and I wouldn’t put myself through the benefits system again, because my mental health took a dive, from the judgement and the process and the difficulty in explaining my situation. Ultimately, it came down to me trying to live my life, why I lost my benefits. I moved in with my wife to be and she earned “too much” (though a lot less than my parents earned but I could claim when living with them) so it was deemed that I was disabled (I “passed” the benefits claim test) but not entitled to any support. This was new to me; we had bought a house (my wife to be had at least) and we were planning a future together and a family. I needed the little amount of money I received on benefits to live. So, if I had benefits advice and support, from people who knew the system and what moving address would mean etc (I had spoken to it to the benefits office, but no-one explained I’d lose my money until my wife had bought the house and I had to reclaim) would have been very useful. I suspect I would have still moved in with my wife, and still gone to get a job, but with the support that could have been given, it would have been a much smoother and better process, for someone who has a chronic illness. It took me nearly 4 years of part time work, before I managed to get myself to the point, I could work full time and in something I want to do with my life. 

 

2) They run nationwide support groups. As you’ve seen, I found the one I went to very useful and I’m currently on the waiting list for another group, hopefully being able to take my journey to the next stage. 

 

3) Signposting support – knowing what’s out there and where to go would have been massively beneficial, to me and my family. As I mentioned, my family have had to come on this journey with me. I feel it would have saved a lot of “wasted” time on therapies and things that were never going to work, having a quality signposting service to useful services in your area. 

 

4) Providing medical professional booklets – for medical professionals. As you’ve heard, my drs missed things they probably shouldn’t have. Alongside these booklets for professionals, Fibromyalgia Action UK also provide leaflets etc on fibromyalgia for patients, giving them an understanding into their illness, which I have had to do to come to terms with it, and therefore move onto the next stage of management. 

 

The 4 above are things I’d have found useful on my journey, but they are only a small part of what Fibromyalgia Action UK provide. Please check out their website for a full list of information on what they provide. Most of which is ran by people, who suffer with fibromyalgia, but want other sufferers to have the support they need. 

 

This is a long, but I feel important, writing of why I am raising money for Fibromyalgia Action UK. It’s what I feel I can do, to help others in my situation. The writing may be long, but, is frankly a brief look, into some of the issues you face as someone with illnesses like fibromyalgia and CFS. So, if this post raises awareness, as well as donations, and how it affects people, fibromyalgia may become less invisible and more research and investigation comes about. Because lastly, I don’t even know what caused my fibromyalgia and CFS. It has an unknown cause, just a series of symptoms that really affect your life. Without knowing what the cause(s) are, we will never know how to cure it or what the best management ways are. And since there are numerous, some good, some not so in my opinion, having a known cause and research into what helps manage symptoms and hopefully one day, cure them, would be massively beneficial, to the people who suffer.