I managed to recover well from my first ME diagnosis back in 1996. It took time, years to get back on track but I managed to exercise regularly ( run 3-5 miles twice a week, Pilates, & Zumba on top of a very ‘active lifestyle’)
Last September I realised that I had more than a normal blip after running whilst starting a seemingly harmless cold. What followed was a continuous downward spiral/ relapse that was devastating and scary. I never saw it coming and never knew it was possible.
Purpose of this Blog
Sport, fitness and healthy lifestyle are part of who I am. Ironically, promoting it is even part of our family business! One of the diagnostic traits of ME (as opposed to Chronic Fatigue Syndrome) is that sufferers are exercise intolerant and almost all sound advice is that exercise should be avoided. Frustratingly, this has been true for me. There is much evidence to suggest that exercise can make people far worse and indeed going from ‘mild’ ME to becoming wheelchair bound as a consequence.
However, the fact that I somehow made a good recovery from ME once before, gives me confidence that I could do it again.
I can’t help but feel there are either cycles within the ME illness itself or the illness is on a continuum / has different subgroups. This might explain peoples differences in being able to tolerate exercise either short or long term and their chances of recovery. Researching ME/ CFS is like trying to find the right numbers on a combination lock; some bits make sense and could be part of the solution but it’s frustrating trying to find the right full combination to regain health!
If it was a case of determination getting me back to fitness I would be pretty confident I could do it, but ME is determinations big enemy. I realize that my attempts at returning to fitness could be risky, but having taken wise counsel, it’s a risk I need to take. Some have told me I need to grieve and accept the change in my new lifestyle but whilst there is still a glimmer of hope to get back to fitness, I’m not ready to go there yet. I’ve discussed it with my husband who, as ever, is fully supportive.
I’ve tried to find someone that could help me on my journey but without fully knowing other people’s credentials on ME I’ve decided that I’m probably the best expert on my own body. So, if it goes wrong I’ve only myself to blame!
As someone used to regular exercise I’m tuned into when the aches in my body felt ‘good’. I used to get quite a buzz from these muscle aches as it meant I had worked hard. I loved those aches! However, these are very different to the aches I’ve experienced during my relapse. These always result in the fatigue and symptoms of my condition being exacerbated further.
I must stress that I’m not advocating Gradual Exercise Therapy. Based on my past experience, this would be a recipe for disaster! My only expertise in this field is my own body and previous experiences. I will not attempt any increased activity until my condition has stabalised so this will be my starting point. I’m using ‘activity’ in it’s broadest sense. Even lifting a finger is ‘activity’! I’m not going to follow any programme other than knowing and listening to my own body.
I’m currently 6 months into this relapse and I’m starting to have a few consecutive ‘better’ days. I’m waiting to make sure this stablises before I even think of going any further. I’m using a heart rate monitor and a Nike Fuelband* to make sure I keep within safe limits and I hope to blog my progress. The purpose is to try to help me discover my body even better, encourage me to restrain myself to stay within controlled limits (I often overestimate how much I can actually do!) try to give me a feeling of ‘empowerment’ over my illness and (hopefully!) to see progress over the coming months. I don’t know whether it will be a long, winding road, a dead end or a road to no-where! I’m just hoping it won’t be a long, slippery road back to the carpark! Whatever the outcome, I’m also hoping others will benefit from my experience. I do promise to be honest!
[NB:* Before my relapse I wore a Nike Fuelband to set myself targets for daily activity & exercise. It was surprising how much ‘fuel’ ie energy was spent just pottering around the house compared to an hours full-on exercise. I now intend to use the Fuelband to make sure that I DON’T exceed a daily maximum]
My story summary so far:
I’ve previously blogged the background to my first ME diagnosis “I’m coming out, believe ME” but as a starting point it‘s probably helpful to set on record a summary of how the recent relapse has effected me:
Since September I tried to maintain my work & voluntary commitments for as long as I could and resting much more in between, but it soon became clear these couldn’t be maintained.
I’m fortunate in that I work from home with my husband who is incredibly understanding and supportive. He took on our domestic duties as well as running our business.
Shopping was all switched to ‘online’ and we employed a weekly cleaner.
I completely pulled out of all my voluntary commitments at church and
put all other commitments on long term hold (except for Brownies where backup allowed me to attend as and when I felt able, even at short notice)
My precious days out with my Mum (severely disabled due to 34 years of Parkinsons & Dystonia) were reduced to short visits or frequently cancelled
My rigorous exercise regime was gone and I struggled to even get up stairs.
There are different degrees of ME. Even though it turned my world upside down again I would describe mine as moderate in that I could care for my own personal needs but needed help with almost all other daily domestic tasks. (See summery of NICE guidelines for severity classification) Getting out has been severely limited and whilst not bed bound, I’ve required lots of periods of total bed rest and sleep. (People rarely see anyone with severe ME as they are fully housebound and sometimes bed bound.)
How it affected me – symptoms
‘ME’ can mean different things to different people so, to be clear, I’ve listed my main symptoms. Fortunately I didn’t have all these symptoms all of the time and they would all vary in severity:
- Strange breathing patterns – Constantly having to take forced deep breaths. Standing or talking for long would make me yawn, feel drained & exhausted.
- Heart – race & stop (24hr ECG showed ectopic heart beat)
- Numbness/ pins and needles – hands and feet especially first thing in morning
- Difficulty standing – Standing and talking was particularly difficult and standing and singing left me feeling particularly weak and unable to breathe fully resulting in more exhaustion.
- Heavy, weak, achy limbs ( but not overly painful)
- Arms, legs, hands – twitchy, shaky. (felt like having popping corn in them!)
- Neck ache (and occasional headaches)
- Noise intolerance – Couldn’t filter out background noises e.g two people talking at once / talking over background noise. Soft noises such as bags rustling or small, jangly bracelets seemed excruciatingly painful, loud and exhausting
- Dizziness- loss of balance, ( felt like labarynthitis )
- Swollen glands
- Fatigue – Often needed to go to bed in day due to physical, sensory or cognitive overload ( typically sleeping 2 hours a day)
- Sleep – Difficulty getting to sleep and/or waking up wide awake for 2-3 hours a night (surprisingly, it was my better days that resulted in poor sleep at night.)
- Rashes – Intermittent rash on body/abdomen and peculiar internal lumps and bumps!
- Poor memory – Short term memory was particularly bad ( including visual where I have always been very strong)
- Language – Would have ‘blanks’ on written and spoken words. I would hear words and forget what they meant. If people asked me a question, I might need to rehearse the words over in my head to work out what they were asking me before I could think of my answer. This was also true for reading: I would read and re-read information but not take it in. When I did take it in, it was then hard to recall what I had read! I would often forget how to spell common words and how to form letters (I could even loose the flow for writing my own name) Frequent word finding difficulties and thinking one thing and saying another. ( sometimes I was aware and sometimes only made aware after my family laughed or looked quizzical!!) I tried to write blogs. I knew I had ideas but couldn’t retrieve them and string thoughts together. It sometimes hurt to think and again caused exhaustion.
- Brain racing! Felt as though my mind was on overload thinking, but I didn’t really know what about! This often happened at night.
- Poor organizational skills – Very uncharacteristic of me! Could take me all day to do the simplest tasks to keep my brain focused and sequence what I needed to do to complete tasks such as emptying the dishwasher, tidying my desk etc!
- Definitely lost the ability to multitask!
Although I was able to laugh at a lot of these difficulties when they occurred, I found the cognitive problems really knocked my confidence as there was no reason for people to have confidence in what I said anymore. It made me feel like a very different person.
Stuck on the starting block.
My GP is approachable and has tried to be thorough but admits she doesn’t know much about ME (This has been far more helpful than GP’s pretending they know about it and giving hurtful and sometimes harmful advice)
I was shocked how few specialists there are for ME ( there are none in my own Health Authority) and even more shocked how few of these were actually recommended!
After much searching, it looked as though private specialists would be the best way forward (Much against my principles!) I did find one that came highly recommended with an excellent self help website. I intend to pursue this further.
The last 4 months or so have consisted of resting and reading. There is a wealth of information online but, as with everything, it needs a lot of sifting through. I wish I had paid more attention in my Neurology and physiology lectures when I was doing my speech and language therapy training now!
ME forums, blogs and twitter friends have also been a wealth of information from their own experiences and research.
I soon got a picture of what might work for me. I discounted psychological approaches:
1) The initial onset of illness hit as a result of a virus which also caused 3 of my other therapists to give up their profession (one of which with Lupus). Another speech therapist also showed signs of the ME but I’m unsure whether she was able to continue with work. I fail to see how a small outbreak cluster can be passed off as ‘psychological’!
2) Because this relapse hit me at one of the happiest, fittest, least stressful times of my life
I’ve tried pure Aloe Vera, Bee Pollen with no noticeable effects
D-Ribose – no significant change although later combined it with Q10 (100mg) and my head did feel clearer. It was around this time that I did feel I was starting to stabalise.
Since finishing the Aloe Vera I’ve continued taking Slow release Vit c and Pro-biotic (Yakult) as I always did before my relapse.
February Activity: (Score: 2.0-5.5)
I feel pacing/ resting has been most helpful so far.
I have just started doing 10 mins of basic core strength pilates per day (if not fatigued)
Last week I felt well enough for a gentle stroll twice our park. My friend commented how well I walked and attributed it to me talking whilst walking (implying it was mind over matter!) However she wouldn’t have been quite so impressed if she saw me the following day! My big error was probably choosing a day when I also had three lots of separate visitors/meetings. The fatigue started that evening and got progressively worse. I was back to bed rest again the next day. My body clearly isn’t quite ready for any additional activity yet!
Grading my symptoms
This started as a joke! I hated answering the question ‘How are you?’ so I said to my husband, I wish I could answer with a number!
I then tried to list my symptoms in severity on a scale from 1.0 -10.0 ( I’m not entirely happy with the descriptions in this scale but it should give some bench mark of where I am each day.)
|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)*|
*This is my ultimate dream although Prof VanNess’** research would argue that aerobic exercise damages the ME patient as their systems are working at an anaerobic rate for everyday tasks and therefore can’t be maintained long term.
I’ve read many other articles suggesting that exercise must be of short duration and non aerobic so I’m not ‘in training’ for Zumba but hoping and praying that I can allow my body to recover enough to allow gradual increases in activity ( NB:Again – not the same as Graded Exercise Therapy as I’m following my own body and not a programme)
I’ve also discovered an app ‘Tracknshare’ to help log activity, symptoms, diet etc so I will see which method of recording is the most reliable.
This has been a long introductory blog. Well done if you’ve got this far and if you’ve got ME I hope I’ve not exhausted you already?! It’s taken me a month to write it so I can guarantee my updates will be much shorter!
I would love to hear from any other sport loving ME sufferers or anyone with an interest in sport, exercise and ME.
** Prof Mark VanNess ‘Exercise and ME/CFS’ Voices From The Shadow event, Bristol, 5th Feb 2014 ( video)