I never jump conclusion, that just isn’t my style, I prefer to wait and see just what happens before I accept anything, well with that done, I now know without a doubt that I can no longer manage to calculate time. Our evening TV viewing is built up from a combination of recorded and live viewing, most evening we will watch at least one half hour, or one hour long recorded program, it should be simple, but last night when once again I selected a half hour program to fill in, to suddenly realise once watched, that yet again we could have watched an hour long program, it was the final nail. For the last couple of months ,this has happened again and again and not just at night, I have fallen into the trap over and over again. It isn’t just time, but that is one that of course Adam has seen happen repeatedly and I have now asked him from now on to check the times on screen before we select the next program, as we are starting to build up hour long shows that need catching up on. I have slowly been losing the grasp on numbers for a while now, I daily now find myself making the simplest additions on a spreadsheet rather than in my head and I do mean the simplest. I can’t actually even count now with any certainty that I have the right number and often now double check if I find there is more than 14, why 14 I don’t know. What I do know is that for someone who was an Operations Manager and spent most of their day analysing data, constructing multiple embedded calculations and actually programming and building bespoke programs in Excel, is extremely scary.
It is strange how you compartmentalise the things that are acceptable and the things that you just can’t get your head around at all, I have no problem with the fact I don’t remember things, that I forget something minutes after I have thought about it, or even written it. Not being able to deal with numbers to me falls into a totally different place, this is territory equal to my waking up and finding that I can no longer talk, as I have spoken in numbers for a huge part of my life, it is now a language that has huge holes in it and craters where it has been smashed apart. I have for a long time now dealt with the problems that affect my speech, loss of words, stuttering and stop dead unable to remember what I was thinking about at all, that is all part of this fun illness. I know all of that is dealt with by my temporal lobe, just as it is the damage to my frontal lobe that causes me to cry and get frustrated and not realise that I am acting unreasonably until it is pointed out to me. This though is a sign that I now have damage to my parietal lobe. I had been given a few clues a couple of months ago when I found myself lying in bed and actually getting the position of where my arms and legs were, totally wrong. For example from what I was feeling, I would be sure that my arm was lying over my stomach, even though I had no memory of moving it and I was sure it had to be by my side, it’s true location. Both are located in the same part of my brain, a part that I haven’t had a problem with in the past, it’s clear that the damage is spreading and that I am slowly disappearing, but faster than I thought. If I am right this now leaves just my occipital lobe to join in, although I know my vision isn’t what it was, I still can tell what things are and where they are. Like nearly all MS patients my cerebellum was the first to show the damage as that is where balance and posture is located, along with attention keeping and language, all clearly affected.
It’s odd being able to sit and sift through what every part of your brain does and to be able to say this, this and this are all not working properly, I guess the point that it really gets scary is when I can’t even do that any longer. We all take all these things for granted, we don’t consider what our brain does for us, because it just does it, that is what it is there for to do all these things for us and without asking our permission first, we just don’t expect that without permission it can also just stop. I can feel totally normal, totally in control and as able today as I was 20 years ago until I actually put that to the test. Invisible illnesses aren’t just invisible to those looking in, but a lot of that time they are invisible to the sufferer as well. I don’t see myself as disabled by my brain, yes I see myself as physically disabled, that is clear, my nerves have been damaged throughout my body and I know and accept that with ease that physically I am unemployable but mentally disabled, not me. But it is me, I couldn’t even sit in a shop and take money from customers as I wouldn’t be able to do the sums required when it comes to prices and change, mentally I am now unemployable.
I don’t know why I find employment as a measurement when it comes to ability, I suppose in life it is the one thing that we are all expected to be able to do. The business world turned it’s back on me a long time ago, as there are so many out there who don’t have the problems I do, with all the growing problems in the last few years, I am now not just unemployable in any job I have done in the past, I actually can’t now think of a single role anyone in any field that anyone would ever offer me, as I said earlier, this is the final nail.
Please read my blog from 2 years ago today – 30/07/12 – Chaos
I found myself stupidly upset yesterday. I had gone for my afternoon sleep and as I always do before I went I had planned out in my head what I was going to do when I got up. I had taken my time in the morning not really writing or going through my tweets with any great speed, just taking it easy with a gentle day set out for me. When I got up from my sleep I came back into the living room…..
Spot on with this post again, thank you. I too have seen myself as physically disabled for a while now, even though I can’t like it, but the brain, memory function, more & more slowness in processing (or not!) information is incredibly hard to take and accept.
Like you, I do then to think of it in terms of work, even though it’s now been 4 years since my last “proper paid job” at DWP. I can’t recall if I’ve mentioned I felt forced into accepting a 12 week temp office job late last September, quite near my home so not much travel. It was full time and I thought I could handle it, but along with the crippling physical exhaustion, I couldn’t remember things, got distracted all the time in my mind and I knew it was bad. I was so mortified for the company to say they would be letting the agency know they couldn’t keep me on for the full 12 weeks as I wasn’t “productive enough” and I wasn’t “picking things up quickly enough”! I have never in all the jobs I’ve had since I was 15, ever been dismissed, sacked, let go or told I wasn’t productive enough, so that was a hard blow.
I feel exactly the same. People do firget that Parkinsons is a brsin disorder and that part of my brain is already dead.
I cant cope with any form of stress for example and I am so tired I could weep.
Your blog is great, keep it up