On Easter Sunday I was forced to walk much further than I wished, through no fault but my own. As a consequence, today I am too exhausted to move and in too much pain. The distance I had to walk beyond what would have been okay was about 0.2 miles. Today I have lain on the sofa watching TV or been cuddled up in bed with my iPad. I’ve had to take extra painkillers and have had to let everyone else look after me. Today I feel pants.
Over the last few months it is possible I’ve watched more TV than I have ever done. I’ve watched so much TV there is never anything on BBC iPlayer I haven’t seen. As a consequence, I’ve watched lots of random documentaries and TV news.
A thought continually occurs to me as I watch the news about events in The Crimea, Syria, Central African Republic or programmes about aid and developing countries all over the world: people in these countries too must have M.E.
M.E. is not a ‘Western’ disease. It is not a disease experienced as a consequence of over development, obesity or the way many live in the ‘West’ today. It is a disease that has existed for centuries, with records showing it in nations all over the world. Indeed my blog has now been read in over 45 countries including many that would be considered far from being ‘Westernised’ in a traditional sense e.g. Nepal, Angola, Egypt, Pakistan and Romania among many others.
There is no question then, in my mind, that there are M.E. patients in these countries. They may not call it M.E. or CFS or any of the multitude of names that it has been called. There may be many thousands who go undiagnosed. Diagnosis however does not create an illness, it simple defines it and puts a pin in what it is.
Where my problem today is that on Easter Sunday I was foolish enough to go for a walk without considering how to get back to the car, Syrian M.E. sufferers may be trying to work out how they refugee to safety. Their problem is not getting back but getting away.
Somebody in a recent forum laughingly mentioned how her and her boyfriend were watching a zombie movie and she said to him, “why did they do that? That was stupid! If that was me, I would have gone running out and blown their heads off!” Her boyfriend then reminded her that she could no longer walk, never mind run but perhaps they could pimp out her wheelchair to make it possible.
What happens in the real world when you can’t have a wheelchair or any form of transport to get away from something life threatening to you and your family? What happens when the only form of transport available is your feet? What happens when you know that your feet cannot take you to the door of your house, never mind take you to safety? What happens when you are in so much pain and your brain is so cognitively confused that you struggle to even understand what is going on, never mind make life changing decisions? What terrible decisions do families have to make when time and circumstance are firmly against you?
Not everyone lives in a war zone. Like me, many live in a world of safety. My thoughts however still turn to those who live in a world where M.E. is even less recognised than it is in the UK; a world where access to information or supportive forums does not exist; a world where the government doesn’t provide a safety net for the permanently disabled. At least for many sufferers in the UK and the USA, even if your family and your doctor don’t believe you, there is a world out there that is still willing to support you i.e. the internet.
What happens when you as the woman in the family are expected to cook and clean, help on the farm, perhaps being involved in addition in some cottage industry so that your kids can go to school – what happens when you suddenly come down with M.E. symptoms?
Surely, in understandable ignorance, you do what many of us in the UK did, you fight on through the fatigue. It is only tiredness. You think it too will pass. What happens when you start to feel so much pain that some of your daily duties become impossible? What happens when the glare of the sun causes your eyes so much pain and creates such horrendous migraines that you can no longer help outside? What happens when the pans to cook dinner for your family become too heavy to lift? What happens to you and your family? What happens to your child’s education?
What happens when you live in a world where nobody understands what is wrong with you? What happens when you go to the doctor (if your family can afford to send you) and they at the very best suggest your problem is psychiatric (they at least may have an old understanding of M.E.)? But what happens when you go and they have no idea what is wrong? What happens when you go home and you keep on pushing yourself in the hope that it gets better? What happens if you go home with the stigma of a psychiatric illness hovering over your head? What do the village think? What happens to your standing in society? What happens if those in your family or community consider you malingering? What happens?
Intuitively, I think I can answer some of these questions. Through knowledge or experience, I simply haven’t a clue. I can only assume that the experience of M.E. in such worlds is catastrophically different. It is a recognised fact that M.E. can be fatal, I can only assume for many such patients it is.
Once after I apologised for moaning about being in pain (before I became ill) to a friend who I knew in reality must be in far more pain than I, my friend told me – her pain was no greater than mine. Everyone has their own perception of pain and what is a 10/10 pain level to me feels as bad as anybody else’s perception that their pain is 10/10. I do believe however perception differs fundamentally from perspective. Although at times I have experienced pain in my perception as 10/10, a little perspective on my situation makes it clear that the same level of pain is not as easy to handle when you are in an environment which does not enable you to rest or access treatments that support you.
It is disgraceful that I was told twice last week that there was no medical professional who could support me through my M.E. but my reality is that I am safe. I am in a family where I do not have to work for the rest of my life if this is a situation my illness forces me into. I am not saying it would be easy but it is possible. My greatest trauma this week was taking an Easter Sunday walk with my family that was too long.
In the back of my head, I have a plan for what I would like to do to support M.E. patients in countries where there is currently no medical knowledge or support for this illness. As to the means (both financial and practical) to go about it, I unfortunately have no clue. Perhaps for the moment I can only allow my knowledge that there are those in a far worse situation than I to help me stay positive, to stay grateful for what I have.