Two years ago this September was when my body crumbled and I began my long walk along the Myalgic Encephalomyelitis (ME) road for the second time.
I have a lot to celebrate and be thankful for. I am no longer bed bound; I can stand; I can walk up and down stairs; I can socialise; I can make plans with some hope that I will be able to fulfil them; I can join in family activities; I can do chores around the home and garden (Yes, I even celebrate that!), I can go into shops, cafes and restaurants without the noise being unbearable and exhausting; reading and writing is no longer a momentous struggle and challenge. The list could go on and on as I am tapping away but suffice it to say that I have improved across the board. (All of the above to varying degrees with fluctuating consistency) I don’t take these improvements for granted. Many people with ME haven’t been able to experience these luxuries for decades and with medical research still being at the stage of posing more questions than answers. I can’t explain it, I can only share my experience.*
My follow up appointment at the London ME biobank clinic this week verified my perceived improvement more objectively. I recorded an increase in my muscle and lung strength as well as overall muscle mass. My hand grip test also saw improved scores. (Click here to read about my first visit)
However, I have an exciting secret to share- I’ve made it back to a fitness class! For those of you familiar with my ‘Road to Fitness blogs’ you will know that to my ultimate aim was to get back doing sport and fitness again. For the last couple of months I have generally been functioning around 80% of my old self. I’ve been able to tolerate and sustain 1:1 Pilates instruction (by a specialist Neuro physio familiar with ME) and have progressed through a beginners course to an ‘Improvers’ class. There is certainly room for a lot of improvement! (despite having done it for 15 years previously)
I felt I wanted to try and build on my aerobic endurance again. I jokingly said I needed to try and find something that didn’t involve moving my arms and legs too much and came up with the idea of hoola-hooping! The joke wore off the better I got and when I managed to do it for 5 continuous minutes (without any Post Exertional Malaise) I realised that was long enough to do a dance routine!
Pre-ME, Zumba was a great passion of mine which always got my endorphins surging! I knew Zumba was still way out of my league but I wanted to try Fit- Steps. Psychologically for me, being able to exercise in a class situation would be a huge boost. I know my instructor well and I don’t embarrass easily so I went along donning my ‘Running on Empty T-shirt’ just for the slow dances and sat out in between whilst carefully monitoring my heart rate.
I didn’t tell many people about this as I know it sounded reckless and I’ve tried to introduce exercise so many times before only to fall flat on my face with constant Post Exertional Malaise.
One of the defining features of ME is that exercise can make symptoms worse. I can not stress enough that I did not improve because I exercised. My ability to try and exercise was only dependent on my body being well and stable for a sustained period of time. Some people never get to this stage and should never try.
It was quite emotional returning to the class and being so close to realising my dream but I couldn’t celebrate until I had passed the 48hour window of Post Exertional Malaise. It’s true that I was very tired with a sore throat and swollen glands 24-48 hours later but then improvement came. I wasn’t fully in the clear but I felt I had recovered enough to give it another go the following week.
So, two years on I am celebrating but it’s made me wonder if I will ever be cured of ME. The first time I was diagnosed (almost 20 years ago) I made a good recovery after several years. Over time, I went to the gym; exercise classes; ran; and generally enjoyed anything active. I used to say that I ‘had’ ME but looking back I certainly wasn’t as robust as I used to be. My friends used to joke that my running seemed better after I hadn’t done it for ages, I used to be a magnet for germs and infections and it would seem to take much longer to get over them. My body would usually crash during holidays and I would often spend Christmas unwell. With hindsight, I don’t think my ME fully ever left me.
I am confident that I will continue to go from strength to strength but I also suspect that unless a medical cure is found for ME, it will be something that I will have to live with for the rest of my life. I have no idea what caused my relapse but this time I will certainly continue to be disciplined with my diet and pacing. Indeed, I think it is important for everyone to listen to their bodies and adopt better rhythms of life no matter how fit and healthy they are. I wish I didn’t have such a strong desire to exercise. I might have more energy for other things if I could just lay it to rest, but it’s in my blood. It’s certainly not on any credible recommended list but sometimes doing things that make me feel alive need a risk.
I would love to finish on this positive note but less than 48 hours after getting the positive results back from the ME Biobank my body crashed again. I have absolutely no idea why it took 2-3 hours to warm up and subside my uncontrollable shaking despite an electric blanket, two duvets, 3 blankets and my dressing gown! It was an unusual reaction but clearly my body had over reacted to something.
There are so many oddities to ME. Trying to work everything out can just tie yourself up in knots and be a waste of valuable energy. Flare ups will continue to come and go but I still now see myself on the ‘well’ side of ME than the ‘ill’ side. The old symptoms do still sometimes return but they are mercifully less severe and short lived and I seem to have greater bouncebackability! So, two years on, I may not be ‘cured’ but its still good enough reason to be celebrating and I look forward to continue going from strength to strength!
*I have just read this explanation from Dr Sarah Myhill which has given me great hope. I have no association with her whatsoever but her advice is virtually identical to what I’ve been following with my Combination Therapist (Norah Wickerson) It makes perfect sense based on my experience. I’m buzzing! cfstreatmentguide.com/1/post/2015/09…