There is no warning, not even the slightest one. Suddenly, I am tired. Bang out of the blue, I feel as though I could lie down and never get up again, but I know this tired, it isn’t real in any way, shape or form. If I were to go to bed, right at that second, yes, I could lie down, close my eyes and lie there for probably, up to an hour, but sleep, no way. I have known this for so many years, that I now have it nailed. If you were to feel it this second, you too would think that sleep was the only answer, but getting to that bed, would be one of the most exhausting journeys you would ever make. Your muscles would be wooden, heavy and hard to move. Every step, or in my case, every turn of my wheels, is painful, slow and leaden. Coordination is a process you are aware of, but not successful at. It is a laborious trip, one that less than half way through, you know, you shouldn’t have even started. If you are standing that danger grows, whatever you do, don’t close your eyes, no matter how they try to tempt you and they will try. It’s dangerous to close your eyes, as where ever you are when you do so, will feel like the spot you just couldn’t and shouldn’t ever leave again. As your eyelids fall, a wave flows through you, pulling you away from the conscious world, while heightening every sense your body has. Your entire body is suddenly alive and every centimeter of your skin is tingling. As darkness fills your vision, your muscles start to collapse and you are trapped between two worlds, ones which neither really want your presence. Rejected by sleep, abandoned by wakefulness and unless you are lying down or at least seated, you know, you will fall as your balance is gone.
It is right now that you long to feel an arm around you, another body that will take away the strain of movement, the fear of falling and that feeling of rejection by life, but you had better start praying that they don’t speak you. Your brain is so far away, that words are not there to be used. You feel almost drunk, but without the euphoria or that warm glow that alcohol brings. It’s not just your body that is affected, you have all the bad side of drinking, without any of the good. It is around about now, that you start to feel sick. Remember, all of this has appeared from now where, it doesn’t matter where you are, or what you are doing and there are no rules either about how long it will last. The final twist, no matter whether you go to your bed, or you stay up, you aren’t going to feel any better either way. Going to bed may seem safer, but for me, when the world is swimming and I feel sick, lying down makes things worse. Staying up, keeping your eyes open and getting on with life, is hard, but it actually is the best way to continue, as there is no winning, just waiting for it to pass, and it will when it’s ready.
I don’t know if that belongs to Fibro or PRMS, I have had equal numbers tell me over the years that it belongs in both camps. I don’t suppose that it really matters which, just that chronic fatigue exists. I can remember having spells of it right back into my 20’s, and it was one of the things that used to force me to go to the doctors looking for help. Not when it hit, hung around for an hour or so then vanished, but when it appeared and hung around for days. Almost every time without fail, I would be told, “It’s a virus, go home and rest”. When I returned a week later, I would then be told helpfully, “Viruses can take months to clear, I’m sorry theirs nothing we can do”. If one of them had just done a blood test, sent it off for proof, I might not have taken so many years to get a diagnosis, or if one of them read my notes and saw, that I constantly returned complaining about pain, well who knows. These days, well it varies, it can still hang around for days, or just an hour or so. The most common, is the sneak attack, the one that wipes me out and leaves me floored for a short period of time, maybe an hour of so, then vanishes as fast as it attacked. If what I described where to hit you right now, I know you would be totally shocked, but try and imagine, how it feels when it vanishes just as quickly. We are used to symptoms that build, that move in graduated steps, both in their arrival and departure, quite honestly, the fact that this doesn’t, is probably at first, the most distressing trick that it plays.
Like everything else, there are variations in its strength, what I described I would put pretty high on the intensity scale and almost exactly what hit me yesterday afternoon just after 2 o’clock, and it hung around until just after 4. I didn’t go to bed, as I said, nausea and lying down don’t mix well for me. I usually land up leaning over the edge of the loo wrenching at nothing. Trying to push through and attack like that though is tough. The temptation to just close my eyes and rest my head on the desk is great, but that’s no better than going to bed. I honestly think it the closing of my eyes that is the real problem. I have tried taking my antinausea drugs, but they don’t work that well on this, which just adds to my belief that it’s all tied to my eyes, not something physical. Mind you, it doesn’t stop my taking them, trust me you too would clutch at straws. The point of my writing this, though, wasn’t just to describe how it feels, or to seek sympathy, it does have a third purpose and important one.
In the UK, our government has been pushing to get those who are long-term sickness benefit back to work. If you have been reading my blog for a while, you will already know that I worked right up until 5 years ago when after working from home for 3 years, I was made redundant. Despite being housebound, I fought to try and find another job for over a year, then my health took a downwards turn and I was forced to admit, that my working days were over. I am a great believer that working if at all possible, even if it isn’t in our chosen field, is actually good for us, so in a way, I agree with them, but I don’t agree with how they have been going about it. Especially when it comes to those of us with invisible illnesses, as what your doctor and your consultant say about your health is of no importance at all. You have to attend a meeting where you are assessed by a non-medical person. I haven’t been asked to attend, but I have spoken with many who have, plus, I have kept up with the reports in the media as to what has been happening. There have been many horror stories, of people dying from cancer having their benefits removed and being told they have to go back to work, then dying without the support they should have had, within months. Equally, there have been many who have returned to work and managed better than they expected. Neither end of that spectrum, unfortunately, surprises me.
I wrote this because, I read a post from another person with MS, who had just been told, she was assessed fit to work. I don’t know, if she is or isn’t, what I do know, is she wasn’t a person who expressed herself with a great deal of eloquence. She wrote in great detail about her pain, and her difficulties with mobility, then in a handful of words she gave her version of the above. “I get sick, I can’t stand, I’m so tired, that I just want to give up. I can’t do nothing and I don’t want to. It just happens, like without warning. I can’t work like that.” I knew just what she was meaning, but if you haven’t lived with it, it sounds like nothing at all, something not worth a mention in any way what so ever. Her descriptions in writing about her condition were poor, weak and lacking in feeling. When you write, you have the time to add in far more flourish than you do in conversation. I was left feeling that she was being sent back to work, not because she was well, but because she lacked the ability to describe exactly, what her health, was doing to her, and the impact, that it had on her daily ability, to do anything. It left me wondering just how many people have been found fit to work, simply because they lacked either education or just the simple skill of how to express the reality of their lives. I have heard many times people saying that these meetings are unfair. I have also heard it said that the tests are fair and representative of what is expected in the workplace. Either way, there is one thing that is always going to be true, if you can’t express yourself, well and with confidence, you are never going to be fully understood. Everyone, even those who are supposed to be impartial, judge everyone, by their own personal standards, especially, when it comes to educational background. It shouldn’t happen, but the poorer the area someone comes from and the worse someone comes across, the more likely, is the assumption, that they are swinging the lead.
The “work capability assessment” isn’t a universal system across the UK yet, but this is a quote from the Guardian Newspaper and refers to a study taken place in these areas, “according to a study that linked the tests to 590 extra suicides and hundreds of thousands of additional antidepressant prescriptions.” To me, there are only two people in this world who are qualified to say if I am able to work or not, me and my doctor. There are no other tests, other than those that assess us medically, that can be brought into this equation. I know, that my doctors suggested that I gave up work 5 years before I did. I believe if I had, my health now would be worse, but not everyone is like me. Whichever way you look at it. these assessments are wrong.
Please read my blog from 2 years ago today – 26/11/2013 – Hospital and back
Two Rooms Plus Utilities 