So, here we go again! I’ve been at this point many times before over the last year. I’ve rested, paced myself, and I’ve now had 7 months of a strict diet and supplements to enable me to try and re-introduce exercise into my life.
For those that are new to my blogs, I was first diagnosed with ME in 1996. It stripped me of my career and of most other things that brought joy to my life. I did however, gradually regain my health and fitness and over many years returned to an active – filled life including my much loved regular fitness and exercise.
Last September I had another relapse which sent me crashing back to square one. I thought previous experience would aid me to a speedier recovery and a return to exercise. I blogged my monthly journey: ‘My Road to Fitness’ and despite my previous experience, optimism and determination, ME is not for being rushed. Despite improvements in my health, exercise couldn’t be maintained and tolerated beyond gently pottering around the home and garden, with occasional shopping trips on good days! So, after another period of relatively stable health I decided to give it another try.
It’s important to note that my ME is now at a mild stage and I am under the watchful eye of a very experienced Combination Therapist. I must reiterate what I’ve included in many previous posts as it’s so important: UNDER NO CIRCUMSTANCES should anyone with ME attempt any exercise unless they are confident that their body has been stable for long enough to introduce any extra demands on it. In fact, this is true for both physical or cognitive demands. From my experience, less is always more. Always err on the side of caution.
Having been bed bound for so long, being able to walk round the house or to the shops can quickly make you feel invincible! The chances are that at best, disappointments will follow, and at worse, you could set yourself even further back than where you were before. I would also be very wary of accepting help from anyone offering an exercise ‘programme’ even if it has been set by your GP. In my experience, the only way to improve is to listen to your own body and balance whatever you put in with double the amount of rest. Pacing is crucial.
After 7 months under the watchful eye of my Combination Therapist, Norah Wickerson, I was given the all clear to start re-introducing exercise with short spells of Nordic walking. It’s gentle on the joints and the benefits to effort ratio is high.
At our children’s request , and against my better judgement, we had booked a stay at Center Parcs for half term. For the uninitiated, Center Parcs is a haven for sport and recreation set in a forest where the only method of transport was either on foot or bike.
I do believe I will continue to be strengthened (another blog for another day!) yet I admit to being nervous. Having gained so much in my recovery I really didn’t want to throw that all away. It was over a year since I had been on a bike and there was every possibility that just cycling to the activities would be more than what I could (or should!) be doing. I was seriously in two minds whether I should in fact be hiring out a mobility scooter rather than a bike upon our arrival!
Our chalet was only a couple of minutes from the main centre with flat paths to navigate. I was very grateful for the generous gearing on my bike and the effort involved for cycling seemed comparably less than walking.
Once I had relaxed about my minimal effort I was transported back to a world of wonderful normality. I was transported back to my world pre-ME. The wind blowing through my hair and the sun shining through the golden Autumnal forest canopy is a feeling that will stay with me for a long time. I felt like a caged bird that had finally been released!
I was careful what activities I chose and timings between them. I also made sure that I put in plenty of extra rest each day for my body to recover whilst the rest of the family were clocking up extra activities! ( I wouldn’t normally recommend doing activities on consecutive days)
I was wary about swimming. I often react to the chemicals in the water. It was more a short session of splashing & going down flumes than swimming and whilst I did come out of the pool complete with an attractive rash it didn’t progress into swollen glands or throat infections as was typical for me.
Table tennis seemed an obvious, low impact activity. However, it was interesting that as soon as I began a competitive game, I felt my adrenalin kick in! Despite loving sport, I’m not a naturally competitive person and it was ridiculous: my body felt like I was serving match point at Wimbledon, not a friendly game with my teenage Son! I soon resorted back to friendly knock arounds for the rest of our stay!
I flirted with a few minutes of badminton and the rest of the family even accommodated picking up the shuttlecocks for me! ( I still find standing up from a crouching position hard for my body to cope with – especially if this is repetitious
Ten pin bowling was also another winner for me (literally!) – once I had discovered the lighter bowling balls! ( still had adrenalin isues!)
The biggest surprised was with Squash. I expected to be spectating for most of this, but I found it the biggest success of all! We rotated players so I only did short intervals and we made up our own rules to ensure; A)it wasn’t competitive (!) and B) that I wasn’t running around the court. I could also scoop up the balls easily with my foot/racket so I didn’t have to bend down or rely on others to do it for me. It was pretty much like practising tennis against the wall when I was a child but with the benefit of a small, enclosed court and not loosing the ball!
To people with experience with ME, it sounds like I did a crazy amount in one week. It was certainly a lot more than I was intending to do and you can see how hard it is for me to even stick to my own advice! I did at least manage to rest plenty in-between.The observant among you will also notice that I didn’t mention Nordic Walking in my activities. The one activity I was prescribed and planned to do! Unfortunately, other activites just excited me far more!
For readers without experience of ME, I’m aware my efforts must seem pitiful!
I was amazed how well I felt at the end of the week. I seemed to have escaped the dreaded Post Extertional Malaise (PEM) which often kicks in 24-48 hours after exercise and be the start of another flare up. ( Very typical in ME )
It wasn’t long ago that even being in the same room as sports courts, swimming pool or bowling alley would be too much. I was barely aware that I had successfully filtered out the fluorescent lighting, echo y rooms, and background noises as I began to play. None of them caused pain or fatigue. I internally celebrated and thanked God for the blessings that most people take for granted.
I felt healthier just putting my kit and trainers on again! It was also fabulous to be able to do things as a family again and for someone who has always loved exercise, being active and among nature, the whole experience made me feel truly alive!
People with ME constantly have to decide how they use their energy on a daily basis and planning recovery and rest times is a crucial part of everyday life. This is sometimes referred to as ‘spoons of energy’ and why we are sometimes referred to as “Spoonies”
It can feel selfish and self indulgent to use the little energy I have on exercise, particularly when there is the danger that it could make me worse. Exercise is no longer a way to keep fit, it’s purely a way to have fun and feel liberated!
My week went better than I could have dreamed of, and I even woke up with that fabulous feeling of achy legs – not the heavy, burning, twitchy aches of ME, but the satisfying feeling that always used to signal new strength. Although I ended each day very tired, sleep seemed to restore me again (another big step forward). However, I came home very aware that my body was craving rest. Despite my best efforts, rest hasn’t been possible every day since our return and a simple walk yesterday triggered my legs to burn and become heavy with a headache that pain killers couldn’t shift. I’m praying that further good nights sleep will be enough to restore me again and it’s not the start of the slippery slope.
It’s confusing why I’ve got delayed symptoms returning now. It could be that the walk yesterday was up a steep hill (not through choice!), it could a cumulative effect of last weeks activities catching up with me, or both. Either way, the reminders are there that ME is a precarious balancing act and a step too far could still send me crashing down.
I don’t attempt to give any answers on my blogs, all I can do is to share my experiences in the hope we can learn from each other.
There was something liberating about doing what I love with the people I love, though.It’s a shame my passion is exercise, but even if it was singing, sewing, playing in a band, the same challenges would be there. What I have learnt is that if you have lost something that you once loved, you can still get enormous pleasure from giving it a go by making adaptations suitable to your limitations and needs – but always quit whilst you’re ahead!
I’ll be having another long rest period before I attempt any further activities but one thing is guaranteed, there will be a next time!
With the caveat of great caution, there are times when a small dose of what you dream of must be worth the chance!
I love this song; “Move” by K-Love. It sums up what I’m trying to say brilliantly: https://www.youtube.com/watch?v=-EuV5goIkb0
This short video explains how “Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects” http://t.co/5Kj0iY75BV