By Laura Ridgway at GoLittleBigGirl
How do I start thee, blog? Let me count the ways…
I could begin with a comedy tale about how I was a feckless, reckless wheelchair user. Or with an anecdote about being forced to use a stolen identity as a backpacker in Peru. Perhaps a paragraph on how my son decided he wanted to compete in the Olympics in an event that doesn’t exist? Nope. None of these is quite right.
This blog feels like The Big One for me. It’s important. So important that I can’t figure out how to say what I want to say.
In short, this is my experience of being ill with ME and how I have recovered from it.
It’s been hard to introduce for two reasons.
Firstly, although I have been well for five years, there’s still a niggly little doubting voice that questions whether I truly have recovered or whether it will come back to floor me again one day.
Secondly, there is controversy around the definition or even the existence of ME (also known as Chronic Fatigue Syndrome (CFS) as a physical illness.
So, I’ve had to do some tough internal interrogation to clarify what I want to say. Turns out it comes down to this:
· If you have a stand-alone diagnosis of these conditions, although there is no cure, recovery is possible so don’t give up
· Some doctors will fob you off – keep trying until you find one willing to listen to you and help you
· Don’t settle for living a half-life – if you are struggling on, feeling like you are not properly ill but not properly well, seek help (and you may need to surrender to the illness before you can begin to recover).
I remember someone once describing the experience of having ME as ‘like walking a tightrope between acceptance and hope’. For me, that perfectly defines my experience of trying to recover from it.
Yes! My journey and that of thousands of others shows it really IS possible to recover. I feel the need to counter this with ‘in my opinion’, because I’m sad to say I’m in the minority.
It is true that there is no cure for ME, but many people in the ME community have been told that because there is no cure, they will be ill forever and the only option is to try to manage their condition. I completely understand why many of those who are still so very poorly can be led to believe that people like me, who say they have recovered, must never have really had it in the first place. This is why this blog has been so challenging to write, because it feels scary to ‘come out’ as recovered.
Regardless of this ongoing debate, it is undeniable that – due to a lack of funding and research – medical science still doesn’t understand ME, and as a result, patients have long been victims of neglect because they don’t tick the right boxes on diagnostic forms. Instead of doctors being curious and looking into why so many thousands of people describing the same symptoms are unable to get better, rather it is the patients who are doubted, blamed and, ultimately, neglected.
When I became so poorly after multiple viral infections 10 years ago, this approach made me feel I must be mentally ill. All my test results appeared to prove there was nothing ‘physically’ wrong with me (except a handful of ‘normal’ infections) and yet I felt ill like I had never felt ill before. So, logic dictates, if there’s nothing seriously wrong physically then it can only be mental. For quite a long period I believed that my illness, or my inability to get better, was psychological and could be cured using NLP (neuro linguistic programming). It wasn’t and it couldn’t, although I have since found NLP to be useful in lots of areas of my life.
I won’t regale you with the emotional back story of how I was struck down with this devastating, life-changing, misunderstood and criminally under-funded illness.
What I will tell you is that when it got me, I was no longer me. I began to unravel, in spite of my proud strong will power and resilience. I discovered that ME could not be ‘willed away’ with positive thinking, fresh air and exercise – which had always seemed to cure any previous ills.
All the things I used to do that I believed made up ‘me’, I could no longer do. I couldn’t do my job. I couldn’t go out with my besties. I couldn’t have friends over for dinner. I couldn’t ride my bike, kayak or coasteer. I couldn’t go singing. I couldn’t help my husband finish renovating our derelict cottage which we’d worked on together for two years. I couldn’t even be a mum to my son. I couldn’t pick him up to cuddle him. I couldn’t cook him food nor feed it to him. Sometimes my husband had to feed my food to me. Sometimes he had to clean my teeth. Couldn’t, couldn’t, couldn’t. And I had always been someone who always could…and did!
When I first began to suspect I had ME I read a list of the most common symptoms. I remember there were 21 of them and I was experiencing 16. These are the ones I can recall most vividly.
Fatigue – and I mean unrelenting exhaustion like I had never known, manifested as absolute weakness in my body and especially my limbs. It was too much for me to hold my hands in my lap, they would just drop to my sides. A really worrying symptom was a constant ‘buzzing’ in my body, strongest in my legs. Like pins and needles on steroids. It felt like someone had left me switched on and my batteries were struggling to keep their charge. For the first few months I seemed to have a constant sore throat. I had joint pain, like a migraine in my knees, and horrible cramps in my legs. There was disabling dizziness, headaches, muscle twitching, gut problems, urine infections. I had fibroids and kidney stones. I would experience something called ‘brain fog’ which meant I couldn’t give instructions as I could not find the right words or focus long enough to finish a sentence. It all combined to make me feel like I was drunk, hungover and full of flu at the same time. And I just could NOT sleep. So very tired yet unable to sleep. With a toddler to look after and a husband who left for work every day at 4am.
At various stages, various doctors left me feeling varying degrees of madness. In the words of Willy Wonka: “You must never, NEVER doubt what nobody is sure about”. Willy was just a simple sweet-maker but oh so wise. When it comes to ME doctors should be trained to know better and doubt less.
I was accused of ‘not trying’ when a consultant was testing the power in my limbs. Despite the fact that he had no specialism in ME, evidently because he could not explain why I had no power in my limbs, it must have meant that I wasn’t trying to use them.
I was asked by a GP “Aww, do you think it was anxiety?” when I described the shaking and buzzing in my legs when I first climbed the stairs at work after being off sick for three weeks (more time than I had taken off sick in the rest of my working life put together. Eventually, I ended up being off for more than a year).
I was discharged by Wales’ only ME consultant on the same day he diagnosed me, 14 months after I fell ill, with no help except a recommendation of a bizarre psychology book with a psychedelic monkey on the cover.
I’m grateful that sufficient time has passed that I no longer shake with anger or cry with shame at the memory of some of those sorry encounters. But inexcusably there are thousands if not millions of others who are still suffering such experiences. Ten years on and there are still others who are not believed. Dismissed. Belittled. Ignored. Neglected. There are thousands of others who were previously very healthy, happy and above-all active people. Others who are now confined to a wheelchair, a bed, or a hospital. Thousands who have lost their jobs and are reduced to a physical and mental shadow of their former selves.
However, in spite of all of those encounters of mine and more, I am also grateful that I never gave up hope. At times I wasn’t sure what or who to believe, but I always maintained a powerful self-belief and knew that if there was a way for me to get better, I would find it.
It took me a long, long time to find it. I found dozens of others before me whose recovery stories I devoured; in books, on DVDs, via email and phone through friends of friends and finally, via a charitable clinic which helped me fit together the pieces of my own ME recovery puzzle.
It would take me another blog to list all the treatments, potions, techniques, drugs and therapies I tried, although I did stop short of taking the snake venom recommended by one of the recovered patients I spoke to.
In recovery from ME your hopes will be dashed. Over and over and over again. Learning how to recover was the single hardest – and longest – challenge of my life. My four years at university and college were nothing compared with the researching, studying, experimenting, failing and life-lesson-learning I amassed in that very different adventure.
I had to unlearn great chunks of my personality whose behaviours I believed (and still do) had very gradually steered me into a position where my immune system was so shot it would pick up virus upon virus and then the post viral fatigue would eventually render me useless.
Back to that hope though. My recovery began with a LOT of dietary changes to help right a few internal wrongs, then there were techniques to calm down my overwrought central nervous system and get my body out of the ‘fight or flight’ mode it was stuck in. Then some counselling and life skills to tackle the roots of some of those unhelpful behaviours – two of the most crucial being learning how to deeply rest and learning how to say no.
Finally, once I began to be able to do small tasks again like having a shower or folding some washing, the single toughest challenge – especially for an achiever personality type like mine – was to learn the art of pacing myself… and this is where that tightrope between acceptance and hope was at its wobbliest and most perilous.
This presents just a small and hazy image of my fiendish jigsaw puzzle of recovery, made all the tougher as there was never a reference picture on the box.
Everybody is different and every body’s recovery from illness is different. No one person’s ME symptoms will be exactly the same and so of course there is no one-size-fits-all recovery plan. But unfortunately, at this point in time, there is literally NO accepted recovery plan.
So, to anybody who is struggling with fatigue-related chronic illness and has been given no hope of recovery or even any help to manage their condition, these are my best starting suggestions. They may not fix you fully or quickly but they may at least help you to accept and cope with how your life has changed until some clearer direction finds its way through to you. And just because it took me a long time to recover, it doesn’t necessarily follow that it will be the same for you.
· Believe it is possible to get better and never give up hope
· Find and listen to people who have recovered – and don’t be disheartened when every one of them gives you a different story of how (dig deep and there will be common themes)
· Examine your attitude towards (and beliefs about) rest because true rest, in your mind as well as your body, is your best friend
· Practise forgiving yourself, it’s an essential skill you’ll need to learn how to pace yourself
As for my alternative intros to this blog. I was indeed a feckless, occasionally reckless wheelchair user, there’s a Tesco ad stand and a wildlife park fence which could testify. But conceding to use a wheelchair opened back up the outside world which I was so determined to remain a part of. And I am extremely fortunate that after eight months of researching my way to physical improvement I was gradually able to ditch it.
I was indeed given someone else’s identity to gain entry to the Inca Trail in Peru (before ME struck me down). My tour guide sprung it on me two minutes before my train arrived at the trail entrance so I had no choice but to assume it. It was not the last time I have had to reinvent myself in order to move forward.
And my son did indeed announce his plan to be an Olympic parkour athlete last year. It was then I realised – fleetingly and not for the first time – that this MUST be the purpose of my having lived through the hell of ME. Of course! If I was to parent an Olympian, I would need to draw on all of the self-fortifying strategies I had learned during recovery and convalescence to keep us all afloat during the training and tough times!
I shall always seek to find a purpose in what I went through, I haven’t found it yet but from time to time I think I’ve seen the light. Who knows, maybe my son will become an Olympian. And who knows, maybe a cure or accepted recovery plan will be found for ME. We can but hope.
We can but hope.