Middle aged spread
Spare tyres
Love handles
Blubber
All names I have heard used for the weight gain that is almost inevitable with this cocktail of medications and inability to exercise.
I have never been what you may call 'large' and have always been very active. I was a single Mum for years and before that may as well have been, so living on a tight budget was never conducive to owning a car. As such, the usual phrases that people get told by their GP when they first approach them about their health concerns were null and void "Your pain/fatigue/other symptom is being caused by your weight. Lose some weight and then if it persists come back and see me". I also never smoked much (except for the few as a teenager, and my IBS (irritable bowel syndrome) means I could never tolerate much alcohol on nights when I had a babysitter). Despite this it has still taken me 19 years to be diagnosed with chronic fatigue syndrome and fibromyalgia, and 16 years to be diagnosed with adenomyosis and polycystic ovaries. I have been diagnosed twice with IBS.
Despite their usual phrases being out of commission for me, I have found that they instead blame everything on the one diagnosis rather than investigating further- hence the long wait for further diagnoses to date and these still do not account for all of my symptoms. For example, I started experiencing increased pain levels, to the point I was doubled over and unable to move until the pain passed. This was happening with random timing and activities, always in the same place on my body and with increasing repercussions on my daily life as a single mum. Imagine having to get two young children ready for school in the morning alone, both of whom have undiagnosed autism, then having over a mile to walk to the school regardless of the weather, before having to walk the same distance home once gain. It was a daily battle to get my son there alive with his lack of danger awareness and reluctance to get to school. Add into this mixture the unpredictable pains I was having and perhaps you can see what led me to my GP surgery. I explained everything I was experiencing, had an abdominal examination and was told it was my IBS. I knew this wasn't the case so returned to my GP surgery to see a different GP. They tole me the same, but this time I insisted I be referred to the specialists at the hospital. I had been through this before and knew it wasn't being caused by IBS. I know my triggers and have done since I was a teenager. I also knew they would want a food diary to track any possible triggers. I had a long wait for my appointment so underwent private food allergy blood testing in the mean time, as Dr Google had suggested food allergies as a culprit for the pains and my daughter (G) had already developed a few food issues. I discovered that I actually had become intolerant and allergic to several food groups and that once these were eliminated from my diet the pain linked with this area of my body eased substantially, but didn't go away. I felt less bloated than I had been but was still concerned so returned to my GP once again. I was referred to see a gynaecologist. Then I became the centre of a pass the parcel between gastroenterology and gynaecology. Neither specialty wanted to investigate and kept referring me to the other. It was very frustrating as it meant repeated trips to the hospital, wasted time and I was still in pain. By this time I had started dating and things were going exceptionally well despite my health issues. I found a private clinic online and we went there for me to have an internal scan which showed I had polycystic ovaries. I took this back to the NHS gynaecologist who insisted on doing further investigations and found I also have adenomyosis. I feel as if everytime I have been to see a doctor with pains they have found another illness that I just happen to have alongside whatever is causing the main symptoms I have to cope with every day.
Polycystic ovary syndrome (PCOS) is known for causing many wonderful side effects and symptoms, amongst which are facial hair and weight gain. I also have Gilbert's syndrome which the medical profession diagnose but do not recognise as having symptoms beyond jaundice. It means I need to be careful with medications though and when I am stressed my eyes and gums turn yellow (which in itself doesn't particularly help any stress levels at the time).
I am also on medications that have weight gain as a side effect as well as being in the position now where I need to use a wheelchair to get around.
All of the above together seems to be conspiring against me when it comes to maintaining the size I had last year.
As soon as my mobility became difficult I knew that some weight gain would inevitably follow, and wanted to try and remain as active as physically and mentally possible. I planned on going swimming when I could to minimise the strain on my joints and use the buoyancy of the water to aid my efforts, but the reality of doing this has meant I haven't made it there yet.
When I look at other people who are disabled, or other wheelchair users, even at services for the disabled and wheelchair users, I feel there is nothing that I could access. I am not in a wheelchair because my body cannot physically function at all in any area. I am not in a wheelchair and able to self-propel myself sufficiently to do more than get around a level indoor space for a very short amount of time. Therefore the amazing array of wheelchair sports is not applicable to me. I don't have the strength or stamina to use either my arms or my legs. I can barely hold my own head up long enough to get through a movie, let alone concentrate long enough for a game. I am seriously struggling to find any exercise or social club that would suit me.
Ironically there is a local ME/CFS group that meets now and then but I was too ill to leave the house on the day of their last meet.
This is the problem I have here. Not only am I in a wheelchair, but also I have two chronic illnesses that are unpredictable and flare up randomly, leaving me unable to leave my bed. I also have three children with autism who need to know what is happening and when. Plans cannot easily be changed last minute. Balancing all of this, plus the added stresses we have makes life difficult and interesting. To go out I have to be sure the place is accessible and has a disabled toilet, be able to know it won't be too busy, too loud or too bright, be able to describe it to my children (particularly my youngest A), have an idea of what is there to be able to entice my children to leave the house and get there at all and check any other sensory issues they may face there (such as cooking smells, textures, noises or sounds). This is before we consider leaving the house.
Inevitably I have started to gain weight. I severely dislike having any additional weight on and find it is particularly noticeable with the clothing I need to wear in order to use the commode. I cannot manage to hold myself up with my legs and arm tremoring, and undo or do up buttons and zips so am in unflattering leggings and vest tops with hoodies so I can get away without needing someone to do up a bra for me. There is no hiding a belly in leggings.
I purchased a small pedal machine, but with the CFS and fibromyalgia causing post exertional malaise (PEM) (basically means being exhausted and in pain for some time after doing anything), the pedalling for a short time left me in pain for days afterwards. I have now replaced it with this:
It pedals itself, therefore is a passive exerciser. I saw some expensive versions recently and decided to take a look online for more affordable alternatives. So far so good. I have been able to cycle for ten minutes a day thus far without any ill effects. I do need to recline slightly in order to take pressure and pain away from my lower back, but have not had any PEM issues.
I plan to combine this ten minutes a day with the supine yoga I have been doing on good days for the last four months and try to atleast work off some of the calories I intake daily. It has to be better than not doing it I guess.
I have been thinking about what possible exercises there could be for people in my position, and other than swimming I cannot think of anything. The unpredictable nature of these disabilities means signing up to a weekly class is pointless, joining any team wouldn't be fair and any exercise that puts a strain on any muscles at all is no good. What does this leave?
So when a doctor tells you to exercise when you have fibromyalgia and ME/CFS, please ask them the question- what exercise do they suggest? and where?
Nice guidelines are currently being rewritten because their treatment suggestion for CFS/ME is graded exercise therapy (GET) and cognitive behavioural therapy (CBT) and it has been recognised that these often make people worse, not better. If you really think about the symptoms and issues faced by a person suffering with these disabilities and the treatment suggested it stands to reason that this would be the outcome. Yet the professionals are still recommending this as a solution. Roll on the end of 2020 when hopefully the Nice guidelines will have been updated and improved for us.
In the mean time I will continue with my passive exercise and supine yoga and hope for cures to be found.
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