This will be my final post of my monthly ‘Road to Fitness’. I had hoped to finish next month to mark my one year anniversary since my ME relapse. However, I’m having to pull out before the end of the race due to…incompetence!
Somehow I inadvertently lost my Track and Share app where I’ve been recording ALL my data: how much I drink, sleep, excerise and every manifesting symptom. It’s doubly frustrating to loose my final evidence as it was looking as though I was heading for a record-breaking month. (As of 28th August, my average grading for August was 6.2 matching my previous best month of May.)
My personalised grading chart:
|1.0||Unable to get out of bed|
|2.0||Need additional bed rest during the day|
|3.0||Up, but cognitively and physically limited and fatigued most of the day|
|4.0||Up, but either cognitively OR physically very limited|
|5.0||As above but for shorter periods of the day|
|6.0||Occasional mild symptoms when at rest (Eg unable to tolerate noise etc)|
|7.0||Able to complete daily chores without symptoms ( heart & breathing normal)|
|8.0||Able to do daily chores and gentle exercise (e.g yoga/pilates) without symptoms|
|9.0||Able to do daily chores and gentle aerobic exercise (e.g walking) “ “|
|10.0||Able to do aerobic exercise (e.g Zumba)*|
However, the conclusion of this blog needs to be more than numbers. My aim was always to get back to personal fitness and regular exercise and although I have failed in that attempt there is much to be optimistic about which still makes me feel very much a winner!
I’m delighted that I’ve reached another personal best in August of being on average 62% well. Although I’ve made good progress I’m aware it still leaves me 38% short of being back to where I was last September.
I have always loved my fitness and exercise and it was my ambition to get back to these as quickly as possible. I knew from my experience of having ME 18 years ago, that pacing was crucial and allowing my body to heal / rebalance was the only way I could move forward.
I wasn’t sure what helped me to gain that rebalance after my first diagnosis in 1996. It was a very long, slow process with regular setbacks, but I did, over the course of years, eventually get back to regular exercise on top of work, voluntary commitments and running a family home when my husband regularly worked away. I felt sure I could do it again. Surely the combination of previous experience and determination would be enough to help get me back on track quickly this time?! (wrong!)
I started this blog because I wanted my illness to be an opportunity to help others. I hoped it would illustrate the complexities of the illnesses and dispel the myth that it is primarily a psychological condition.After diagnosis, it can be so confusing to know where to start in order to get yourself better again. I was aware that some options, such as Graded Exercise Therapy, came with real dangers.
Whatever the outcome for me could be a learning opportunity for others which is why I tried to make it as honest and objective as I could.
It’s also been a learning tool for myself. Keeping an objective account of my daily health has helped me see my overall progress when some days, progress felt non existent.
There were no surprising trends from recording my detailed data: exercise, long conversations, sensory overload or cognitive work could all increase fatigue, muscular pain and noise sensitivities. My health fluctuated from month to month, week to week and day to day. Even within a day itself there could be wide variation. Sometimes dips had no obvious explanation at all.
I was also relieved (but not surprised!) that the weather had no impact on my symptoms ( despite what so many of the general public might believe!) .
Happiness levels were also relatively high throughout the year and had no clear bearing on my health dismissing the myth that ME is a form of depression or a psychological state. That’s not to say that I didn’t get down or fed up because of my illness, but I’ve generally felt content and optimistic about the future and my family have helped significantly.
The last year has been incredibly hard work. My GP didn’t know about ME and we have no Specialist in our area. It was therefore up to me to find the strength to research who I could trust with advice and to find suitable and accessible treatment. In the early days an hours reading would be enough to put me back to bed so it was a slow process!
Hopes of recovery have been raised and dashed on more occasions than I can remember; making plans for the future have been put on hold, social contact and commitments have taken a huge hit, physical exercise has ceased altogether and I feel a very different person to the one I was this time last year.
I would have loved to finish my blog by telling you that I had made it back to sport and exercise and ready to hit those Zumba classes again! The reality is that it’s been much harder than I anticipated.
Despite my previous experience; best efforts; an incredibly supportive husband; huge willpower; positive attitude; pacing; 6 months of a strict gluten free, sugar free, stimulant free, low GI diet; a whole battery of supplements I’m still shocked at how fragile my health still is. At the start of this relapse, I never dreamt that I would still be having difficulties with fatigue, weakness and cognitive limitations. ME should never be underestimated and needs to be treated with care and respect from the sufferer. In time, and with more research, I hope it will also be treated with care and respect from the wider medical profession.
When I look back at my list of symptoms in my first ‘Road to fitness’ post I realise just how far I’ve come. I’m writing this in early September and I’ve already had a couple of days of being a whopping, record-breaking 80% well!
What does 80% look like? Well based on my initial symptom list in my first blog http://wp.me/p4dXAG-M
- Heart rate & breathing are generally far more stable and regular
- Numbness and pins and needles have gone
- I can stand for longer periods ( & sing for a good couple of songs!)
- I can do short walks ( to shops etc )
- Limbs are generally stronger: Aches, shakes & twitches are very much the exception rather than the rule
- I’m only aware of very mild noise sensitivities if I’m overly tired or fatigued
- Balance is greatly improved and dizziness has gone
- sleep is significantly better – only very occasional insomnia
- Still prone to regular sore throat & swollen glands (recently discovered antihistamine helps)
- Fatigue is now my most disabling element, but less severe and often
- Exercise is still limited to household chores
- I’m able to multitask!
- ‘Brain racing’ has stopped and my thoughts are generally clearer
- Memory and language is much improved although still far from normal
- I’ve taken on my first trial project since my relapse which is going well
It may be obvious to say that a big positive of my ME journey is that I’ve not become worse! Not all treatments are risk free and many with ME have gone from mild to severe simply by following ill founded advice.
So, I’ve given my best to this recovery. I’m grateful that I can enjoy doing the gardening, shopping and cleaning again. Walking beyond 30 mins on a regular basis still seems too much for now but with another stabilised month in the bag I’m ready to give it another go.
Whilst I won’t continue recording the minutia of my daily health from now on, I will continue to use my own grading system to track my progress over the coming months. It’s something that I’ve found really helpful.
This Road to Fitness turned out to be not just a marathon, but a back to back marathon! However, I’m very grateful to record progress at all. For some people, they are locked in to a gruelling mix of far worse symptoms for far longer than me and it’s with these people in mind that I want to continue raising awareness into this chronic, disabling and yet often trivialised condition.
Before I sign off I would like to say a few thankyous:
Fistly, my husband who has been amazingly patient, loving and understanding throughout this difficult year. I can never thank him enough.
Secondly, my Combination Therapist (Norah Wickerson) who has been incredibly helpful on my ME journey. Whilst her approach offers no cure, I’m quite sure that I wouldn’t be as well as I am today without her help, support, guidance, reassurance and expertise.
Thirdly, you! I’ve been so encouraged by both the ME community who have helped share my journey and friends (virtual and real!) who have cheered me on.
I will still continue to Blog on ME but I feel it’s time to move on. I want to blog on other things relating to faith, health and sport. (It could be a random mix!)
You’ve been a great crowd, but it’s now time for me to retire from this particular race!