Receiving comments is one of the joys of blogging, especially for someone like me, who doesn’t spend that much time, remembering my recent past. I don’t know why, but I often spend hours in my distant past, my childhood and possibly the next 15 years, as they were traumatic times in my life, a time when so much of my life was wrapped in pain. Once I had broken free, and truly built a new life, well life became what I believe it is for most of us, just life. It’s not that it’s boring, or none eventful, or doesn’t hold great happiness and love, but as far as memories go, the majority of it is everyday, normal and average. Even my diagnosis of PRMS, in my mind, doesn’t rate as highly as my distant life, it was devastating and painful mentally, but in reality, nothing changed, I was still me. There is a huge difference between what happens to us internally, and what is done to us externally. So finding myself having to think about what happened in the years that followed that diagnosis, was actually difficult, as I was trying to find memories, that I thought weren’t really there, beyond as that of shadows.
My PRMS was diagnosed because it was in full flow, I was changing, becoming more and more disabled almost by the second. In just three years, I went from a competent fast think person to needing someone in the office with me all the time. I can’t fully remember now who paid for them, it wasn’t the company I worked for, no they were for the first time trying to write me off. I was so sure that I was about to be forced out, that I turned for help to the community nurses, they put me in contact with this body who supplied helpers for those who were in employment. I can’t even remember her name any longer, just that she was this elderly lady who was retired, and like me had worked with high-level maths and arithmetic. Although everything I did was done on the PC, using programmes that I had built, I had developed firstly no memory for getting everything done and secondly, I simply couldn’t see when the reports I was issuing, were wrong. I couldn’t see, when the numbers were actually complete rubbish. She didn’t do my job for me, but she double checked all my finished work, before it was distributed. This was well before I even had my wheelchair, so I was quickly exhausted, and couldn’t cope with the size of the office I worked in. So she also did all the running about I once did. Back then, I honestly thought that life was nearly over, I was useless and being employed, was a joke, but I didn’t want to give up.
What made me remember this period was down to one series of events. She was so sure, that she could find a way of organising me, with lists and so on, that she one day appeared with diaries, wall charts and so on. I have to say that I was highly insulted that she thought that I hadn’t already tried all these things. I opened my desk draw and pulled out my own collection, a far more comprehensive and far bigger collection. I had a filo-fax, dismissed because that was just what I did to it, ignored it, just as I did ToDo lists, wall charts and my old-fashioned desk diary. An electronic personal organiser, with alarms set to remind me of dozens of things, which partially worked on days where everything went smoothly, but if it didn’t, well I answered it peeping, then forgot what it was peeping about because I was too busy to. The same problem occurred when I set up alarms on my PC, they would flash up and be dismissed and forgotten. I had post-its galore, once attached to the edge of my PC screen, which were even more dismissable than any of the rest. A dictaphone, because I could no longer write fast enough when in a meeting, to be sure I knew what I had to do after it, then would forget I’d made a recording, and so it went on. You name it, I had tried it. There was nothing at all, other than a human being stand there telling me what was next, that worked. Despite all of this, we tried. We tried for two weeks and then she even admitted my mind just wasn’t holding on to that sort of information. She had no doubt that I could do my job, technically I could run circles around her and everyone else there, but I had to be prompted. But as you know, I wasn’t forced out then, or for a long time after.
The answer came in two parts. Firstly a wheelchair, so I was so fatigued, but the big thing was the chemo, which I have spoken about often. It was not long after my third dose, I no longer needed a human helper, I was back to me. It was a total miracle for me, over the three years of treatment, my health went into reverse. I had more energy, but I still wasn’t perfect, but my wheelchair assisted and I recovered, I returned to being the switched on can do anything person and I had my life back.Unfortunately, you can only have this treatment once, although I would happily take the risk, I can’t have it again.
So here we are, 9 years on since my last chemo dose. Once the treatment was over, progression returned, but just as my neuro had said, it was slower, less aggressive, but it did return. Each year, I have edged downwards, not just physically, but mentally. Just as before, I can still do what I need to, no I couldn’t write a software programme or produce amazing spreadsheets that show not just what is needed, but with a single cell change, showed what might be needed as well. Physically, everything is exhausting, I can’t cope with taking a shower every day, it’s all too much and assistance, isn’t, going to change that. Every day, I stay busy, so I don’t remember unless told, to shower in two days time, or three, because on day two, I couldn’t manage. A single unexpected phone call, or someone ringing the doorbell, is enough to throw me into a spin. But with Adam telling, pushing and coaxing, I get there. Nothing is simple for me now, change is a monster I can’t deal with, strangers are even worse. My routine isn’t written down, or if it is, I don’t know where. All I have is a spreadsheet, one that I built years ago, that keeps me in line with twitter and writing this, but if something doesn’t happen daily, it won’t happen at all. I couldn’t manage to do something every second day, that just doesn’t work at all, we’ve tried it.
If it were just my body that was the problem, then life wouldn’t be a problem at all. My mind is now a law unto itself. Some days, it is fast, some days, it does everything without a problem, but others, I’m not even sure where it is, I go into auto-drive, if it didn’t, I would do nothing. So what do we do? We can’t afford to pay anyone to help me. We can’t afford to even have a much-needed home help, there just isn’t the money. Besides the money, I don’t think I could cope with someone fussing about me. I sit here all day, normally, I move just four, maybe five times, once for lunch and the rest to fetch juice and go to the loo. I don’t need anyone to do those things, as long as they’re laid out for me to do. All I need is a brain to step in when mine fails and to me, that’s a waste of person’s life, just sitting here in silence for nothing.
Please read my blog from 2 years ago today – 14/02/2014 – Stair way
I don’t know why I didn’t think about it before, but of course although there are some who have read my blog throughout, most won’t have and that means many don’t fully understand some of the most…..
Aw Luv, I feel you. My careers are heavily subsidised but with anyone who comes to my home I tell them what I need. My careers, if not familiar to me are told not to distract me with busy questions particularly if I’m not likely to see them again. Don’t we just love being a wealth of information for others to learn from. I am not a Guinea pig. Does your local area or your local council-have voluntary groups to create some social contact, etc? Luckily, they exist here & perhaps might in the U.K. Keep asking the questions, someone might have the answers.
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I HATE YOUR POST TODAY; BECAUSE YOU JUST SUMMED UP MY LIFE DAY AFTER DAY.
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