So today is ME/CFS/Fibromyalgia Awareness Day but what does that actually mean? In an age of ever increasing “awareness days” it has become all too easy to glaze over at the very mention of such a day, which is a shame when it relates to something as destructive and ultimately overlooked as ME/CFS/Fibromyalgia. Over dinner last night, I felt it was my civic duty to inform the kids that the illness which has had such a massive impact on my life, and by extension theirs, was being acknowledged and highlighted on a worldwide platform. The response? I was reliably informed that Saturday is actually Buckfast Appreciation Day….. See what I mean?
Those who know me are aware that whilst I am pretty open in person, I tend not to share many of the intimate details of my life on social media. There are many reasons for this, not least the fact that I find it hard to believe that anyone would actually be interested! Another, more pertinent reason for this though, is that for almost 6 years now I have been suffering from ME/CFS. I am cringing as I write this, as even now it seems too raw to be sharing on such an open platform but this year I felt compelled to raise the issue and contribute in my own small way towards raising awareness of this debilitating illness.
It is made slightly easier by the fact that I know I am coming towards the end of my journey with this illness. I have made some recent breakthroughs after years of attempt after repeated attempt to overcome what has proven to be a much more stubborn adversary than I might ever have imagined. Due to my silence on the subject, call it male pride, call it suffering in silence, only a few of my friends and family members are acutely aware of just how much suffering has been involved. To say that it completely changes your life and the person you are would be an understatement, which again may explain why I don’t discuss it in public that often. Having an illness, that on the really bad days (or weeks) leaves you completely bed bound, unable to talk, think, hold a conversation or even lift your head from your pillow has an uncanny way of taking away your pride and self-respect in exactly the same way that it saps every last drop of energy from your body. You just want to withdraw from the world and hope that next time you wake it reveals itself to have just been a particularly bad dream.
What makes it even worse is the total lack of respect, interest or help available from the medical community. The official prognosis is that there is no cure and by extension no hope, no interest and no chance of any self-respecting health professional wasting their time on you. That is not to say that I haven’t met some lovely, caring folk in the medical world over the years but what really stands out are the ones who tow the party line and aren’t interested in anything that isn’t in one of the medical textbooks they still use from their student days. At this point I have lost count of the number of doctors I have seen and the numerous tests I have endured but some of the responses I have received have bordered on farcical to downright negligent, from being laughed at, being told that I will never get better, that nothing can be done and I just need to accept it, that I can only ever expect to get back to 80% – 90% at the very best and on one particularly memorable occasion to try some yoga breathing and the single life as it is less stressful! One of the most mind-blowing statistics I have seen is that even though there are approx. 250,000 sufferers in the UK alone and millions more across the globe there is more money spent on hay fever research.
That is why we have an awareness day, why there is a “Millions Missing” movement, trying to bring the condition into everyday consciousness and why I admire those who are so militant in their campaigning while still suffering on a daily basis. To be fair to the medical community there are no biomarkers for the illness and diagnosis is one of exclusion. As a result, sufferers are forced to do their own research and fund their own treatments despite the fact that most are unable to work, and benefit payments seem to be decided at the toss of a coin.
Symptoms are unpredictable and ever changing. The main symptoms tend to be extreme fatigue (not the type you get after a tough session in the gym), debilitating brain fog and constant, never ending muscle aches. The best explanation I have managed to come up with to describe it is to imagine the worst flu you have ever had and multiply it by 10 then combine it with the worst hangover you have ever had times 10 yet again and you are getting somewhere near it. Imagine having done nothing more strenuous over the course of an entire day but lie in bed, only to wake the next morning feeling like you have just run a marathon because your muscles ache so much. On top of this, fibromyalgia sufferers also get the pleasure of acute, relentless, piercing pain. The most exhaustive, accurate and descriptive list I have ever seen was described by Dan Neuffer in his eBook, “Discover Hope”.
“Only a person suffering from ME/CFS/FMS understands what it is truly like to be exhausted. Too exhausted to lift your hand to turn off the TV on the remote. Too exhausted to speak. In fact, so exhausted that sometimes you may even start to wonder how you will take your next breath. Whilst others understand that you may need some quiet time, only a person suffering from ME/CFS/FMS knows what it’s like not being able to converse. Not even being able to listen to someone. Not even being able to even have someone in your room. Whilst others understand what it is like to have pain, only a person suffering from ME/CFS/FMS knows what it’s like to have so much pain that you literally can’t roll over in bed. So much pain that you can’t even stand for someone to touch your skin. So much pain that it becomes all consuming. There are literally millions of people around the world suffering ME/CFS/FMS with symptoms just like you. And yes, that includes all the other symptoms as well, such as brain fog, swollen glands, sore throat and headaches. Problems like not being able to get to sleep, not being able to wake up, not being able to go to the toilet, not being able to STOP going to the toilet. You can’t stand smells, you can’t stand electromagnetic radiation, you can’t stand up FULL STOP, not without feeling dizzy anyway. The list never ends, nausea, unquenchable thirst, sugar cravings, heart palpitations, chest pains, muscle twitching, nightly jolts or flashes, chills and cold extremities, allergies, weight changes, mood swings, anxiety, irritability, depression, rashes, sweating ... –the list seemingly never ends!”
Sounds like fun, doesn’t it?
This is obviously much more than just a social media post for friends, I want it to go further. If you are still reading, I would like to thank you for taking the time and hope that this has given you some awareness of the realities of these illnesses. This has not been a rant or a pity party. This is more like the opening paragraph of my manifesto. I have come to realise that this has not been a hardship, this has been an awakening. For me ME/CFS has been a gift and I want to put all that I have learned to use in a positive way by helping those who continue to suffer.
I have been lucky to have met some truly extraordinary people on my journey towards recovery, without whom it would not have been possible. My beautiful girlfriend deserves all the credit in the world for sticking by me which I’m sure she will admit hasn’t always been easy. The same too goes for my beautiful step kids and my immediate family and friends, you know who you are. On top of that I couldn’t have made the progress I have without Joanne Johnson at The Healing Oasis and I urge anyone who feels overwhelmed with any aspect of life, (you don’t need to have ME/CFS) to contact her. She’s one in a million. I also owe an eternal debt of gratitude to the lovely people at The Optimum Health Clinic who are based in London and are pioneers in the treatment of ME/CFS/FMS.
This post is the first step towards the many plans I have to live a fulfilling life acknowledging all the help I have received and paying it forward. There will likely be more posts, the building of a community of like-minded individuals who are ready to make that change. I am currently studying to become an accredited practitioner, not only for the treatment of ME/CFS/FMS but to help people deal with all the various stresses we encounter in this modern world. If you know of anyone of who might benefit from this post or might want to contact me directly please share. If it even makes one person feel less alone and more understood then it will have served its purpose.
I humbly thank you for your time.
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