Guest blog – M.E. and me by Diane Sibley
Hi, I’m Diane, Martyn’s Aunty, but let’s not linger on that point too long, as I’m only 8 years older than Martyn, so I’ve never really felt like an Aunt!! It was a pretty tough thing for a 10 year old to understand that my amazing little nephew was never going to walk – but since then I’ve never really seen Martyn’s disabilities. (Apart from when I used to play ‘football’ against Martyn in his wheelchair – that held some dangers, but that’s another story!!) I’ve just watched this incredible little boy grow into a charismatic, and very capable and charming young man, who has always impressed and inspired me with everything he has achieved. But enough of this flattery….
I’ve always been aware of the battles Martyn has faced every time he needed money for a new wheelchair/car or money for carers – it’s never straight-forward, but it was only when I became ill that I realised what a completely different perspective it is to be disabled.
I was training to be a teacher at University when I first became ill – to begin with it felt like a hangover that wouldn’t go. Although that thought seems quite funny initially, it’s not so amusing when after a month it still hasn’t gone. My GP ran the usual blood tests, and vaguely diagnosed a virus – “Go home and rest!” I returned to him some weeks later and he grudging said it maybe Post Viral Fatigue Syndrome – which he described to me as being the other end of the spectrum to M.E. He said there was nothing he could do for me, and to just rest….
In fact, knowing what I know now – some 13 years on – that was a pretty lucky diagnosis, especially for back then when ME was either considered ‘all in the mind’, ‘Yuppie Flu’ or something that just didn’t exist. But even today, sufferers get diagnosed by exclusion – they have lots of tests and when they all come back negative and the person is still ill with a range of recognisable symptoms after 6 months, it’s categorised as ME.
So what is ME – this is how one of the leading UK ME Charities describes it:
“M.E. (Myalgic Encephalomyelitis/ Encephalopathy) is a chronic, fluctuating illness. It is also known as Chronic Fatigue Syndrome (CFS). Sometimes it is diagnosed as Post Viral Fatigue Syndrome (PVFS). The illness affects many parts of the body, such as the nervous and immune systems. The most common symptoms are severe fatigue or exhaustion, problems with memory and concentration and muscle pain. It is estimated that there are up to 250,000 people with M.E. in the UK. It can affect men, women and children of all ages and from all social and ethnic groups. It seems to be more common to develop the illness between your early twenties and mid-forties.”
ME is a complex illness, with a range of symptoms which regularly baffles GP’s and often is difficult for friends and family to even understand. Even once you are diagnosed there’s no treatment, just resting and hopefully in time, improvement! Finally, over the last few years scientists have started to research this illness and they are starting to find gene markers and retroviruses that seem to be leading somewhere – although it’s still early days yet.
The symptoms and severity are far ranging – including the severely affected who can be bed-bound and tube fed. Luckily, I’ve only been moderately affected, and apart from virtually house-bound for a few years, I’ve been able to intermittently venture out!!
Although I’ve had many symptoms, the over-riding one has been fatigue, but trust me the word ‘fatigue’ doesn’t begin to describe the feeling. The worst thing is when you tell someone you have ME and that you get extreme fatigue and they say ‘oh yeah, I felt like that last week – just sooo tired’ – it’s not the same. Try working 100 hours a week with flu, and partying every night – and then you may begin to understand the meaning of fatigue.
Most of my symptoms are fairly invisible – nausea, fatigue, faintness, dizziness, muscle weakness – so people often think there’s nothing wrong with me, and only the people closest to me can see when I’m feeling worse, especially if I’m pale or turn green!!
So I had to stop University before I could complete my degree as there was no way I could teach in a classroom with such little energy. Luckily I joined the Open University pretty quickly – transferred most of my credits and was able to resume and finish my Maths degree (which I’d been doing as part of the Teacher Training Course) in my own time from home. If you can’t manage to find a University, like Martyn did where you can attend with full caring support – I strongly recommend the OU – once I had my benefits most of my courses were subsidised or even free, and I got a free computer for the year!!
Benefits are a nightmare for most people who try to get some support, but with an illness like ME which is so invisible to a benefit examiners’ eyes it’s downright impossible. I think I read somewhere that the vast majority of people with ME get turned down on their first application, and its only when they appeal or go to tribunal that they get some support. It’s a horrible system, that’s just been made worse by the new ‘Employment and Support Allowance’ which tries to place you in some sort of part-time work. Don’t get me wrong, I, like most people with ME would love to work, but what a benefit assessor doesn’t see is that yes we can do a certain task 2 or 3 times, but ask us to do it all day and we would run out of energy and then start to feel much worse – to the extent that it worsens the illness and puts us in bed for a week or more.
That’s the thing with ME, our energy is very limited – push passed that limit and we are draining reserves and then taking energy needed to maintain our bodies. There’s a nice example I found on the internet that Christine Miserandino (www.butyoudontlooksick.com) once wrote. Christine was writing from the point of view of having Lupus, but it works for ME, MS, etc. She said that having ME is like being allocated a certain number of Spoons everyday – those spoons represent energy, so it may take 1 spoon to get out of bed, 5 to have a shower, and 2 to get breakfast – if you are only allocated 20 spoons in a day, that’s 8 gone already. And once they are gone, they’re gone – you can borrow a bit from the next day, but then you’ll have fewer spoons and be able to do less, and less. It takes a long time recuperate so if you start ‘borrowing spoons’ you may be left lying in bed with no energy for days/weeks.
So, I’ve had my ups and downs over the years – managed to work 20 hours a week for a few years, but I was gradually weakening and eventually I relapsed, which was when I was then virtually housebound for a few years. At that point as well as losing a lot of energy, I lost my confidence – confidence in being able to go out and do something without feeling like you may collapse any minute, or throw up, or any number of other symptoms. So every time I went out it was a struggle and every time I went out I’d be shaking like a leaf – which in turn drains energy.
There’s such a stigma that ME is a psychological illness that the temptation is to stay away from any psychological treatments, but, as with any chronic illness after a while the circumstances that the illness creates takes its toll on your psyche. At the time, I heard about a guy in London who had had ME and was now better, and had set up a clinic in Harley Street to help others with ME – so off I went. Apart from several types of alternative treatments – homeopathy, acupuncture, meditation, etc – this was the first proper treatment I’d tried. It was so helpful – just talking to people who understood exactly what I was going through and who could suggest techniques and strategies to help overcome the nerves and lack of energy, and all the other ME symptoms. (This was the Optimum Health Clinic http://www.theoptimumhealthclinic.com)
Although I’m still not fully recovered I’m steadily progressing and I believe I will be well one day. In the meantime, I am well enough to work part time, tutoring from home (yes, I took what I knew and adapted to fit my illness and circumstances) and working a few hours in an office. I now have my own place, after having my parents look after me for many years (for which I’m very grateful – some people with ME aren’t so fortunate), and have the energy to look after myself once again.
People will often say you learn from having an illness. Although it’s not a situation I would have chosen, as I’m sure Martyn wouldn’t have either – I think you learn to adapt and definitely become a stronger person because of it.
My biggest bonus from being ill, is that I met my boyfriend through the local ME support group, where I have been a long time member and committee worker. I wouldn’t have met him if I (or he) hadn’t been ill, so in a small way I’m extremely grateful for that little perk of ME!!