When I began this blog, I mentioned that I am disabled. But it’s not the kind of disability you can see. It is the kind that people can’t tell you have, so it causes all sorts of problems.
The biggest problem for me, is that I can’t work, much as I would like to, but when you are relying on the benefit system, for your financial security, it is a tentative situation, to say the least.
My husband also became disabled, after working hard for 40 years, and destroying his body with heavy lifting. Recently, because we don’t have much money coming in, he contacted The Works and Pensions, because we had been advised, by Welfare Rights, that I could be included on his claim and that we might get a bit more money than the £109 per week we were getting. But when we contacted the DWP, I bet none of you would guess what they asked us to do! They insisted that we send bank statements, dating back to 2014, with an itemized listing of what we had spent our cash withdrawals on. This is because, since 2014, our savings had dipped, well below £16,000, and they wanted to know why that was?
It is obvious to anyone who isn’t a moron (so what does that say about the DWP) that our savings had decreased, because, the small amount of savings we had when Alan came off work, were accrued while Alan was working. Since he’s been ill, we have never been able to add any money to the two ISAs, but we have had to replace broken items in the house, also, we have gradually replaced our single-glazed windows with double-glazing, and we have had to spend money on anything else that crops up in a normal household, like repairs to the house etc.
We feel that The Works And Pensions have behaved diabolically, for even asking us to account for money that they never gave us in the first place, and we did not spend everything at once. We still have some savings left, because have been careful with our spending over the years, knowing that there is no way to re-replenish our money and that the savings have to last us all of our lives.
If things had stayed the way they used to be, before David Cameron and Nick Clegg made things so hard for disabled people, I would have been on my old age pension now, as I am 63 years old. Because of their meddling, which seems even worse under Theresa May, I can’t get it until I am 66 years old. Alan will actually get his pension before I do.
“So why not just go to work”. That’s what people might say to me. My answer is, ‘Chronic Fatigue Syndrome’. Now this doesn’t sound like much when you say it, but it is one of the most debilitating things you can have, and the problem is, no one can see it.
Chronic Fatigue Syndrome is not a condition in it’s own right. It is a symptom of many other conditions. The ones I know of are: Fibromyalgia (which is, itself, a misunderstood condition) M.E. (another misunderstood condition) Lupus and Tuberous Sclerosis Complex. I am sure there are other illnesses, which have this condition as a problematic symptom.
Anyone with Chronic Fatigue will recognise the metaphoric analogy, of the daily cup of liquid, which runs out during the day as we drink from it, and can never be refilled until the next day. First of all, we wake up exhausted, despite the amount of sleep we have had the night before. During the day, as we attempt to do our normal things, we get even more exhausted. We have to sit down regularly because dizziness and feeling faint, overtakes us. We feel like we have just built a motorway, even after just a short walk.
We have very bad memory and concentration problems, because our brains are working, as though through thick sludge. Speaking for myself, I even forget how things work, like the oven or the microwave. Even typing out this blog, I have had to plan it in my day, because when I have finished, I will be spent and will have to rest.
The other thing I have to mention to you is, we can not get used to a busier schedule, as people without Chronic Fatigue can do. It is not a case of, getting used to going out to work, so that you get better at it. Believe me, I have tried. I even undertook volunteer work to test how I would be. I really gave it my all, but I started to get bad tempered with the customers at the charity shop where I worked. There was one particular time, when I had tilled up a lady’s items, she suddenly went away and grabbed something else. She took me off my train of thought. I had to re-adjust and till up another item. This doesn’t sound hard to most people, but anyone with concentration problems will understand how I felt. I am completely unable to multi-task, or deal with unexpected situations. I just become so confused. That day, I just panicked and had to finally admit that I could not do a normal job.
I love to go out and perform and tell stories. It is something that I do, occasionally, and it gives my life meaning. It means that I can achieve something despite my limitations. However, on the days when I tell a story, or sing a song, I have to do nothing else for the whole of that day, otherwise I would just become confused and would be unable to think straight when I am performing. I have to save my daily cup of liquid, for that moment. I have to practice during the times I feel able to do so, and it can take me a month to learn something off-by-heart. so you can plainly see, I could not go to work every day. I would not even last the week. Believe me, I only wish that I could. As well as Chronic Fatigue, I have problems with my balance now. It’s not good, but at least it is something that people can see.
This blog today, is dedicated to all of those with invisible disabilities, whom others dismiss as hypochondriacs, or simply, do not believe. I have Tuberous Sclerosis Complex, which I have had all of my life, and when I was about 50, I was also diagnosed with Fibromyalgia. If you have an invisible disability, I know precisely how you feel. I know you are not “putting it on”. I wish to tell you, you are not alone.