Ignore us, why don’t you

One of these days I am going to learn not to speak to Mr. Grumpy within the first 10 minutes of him waking up. I thought as Adam had woken early and with it being Sunday, he would be going to going through to our bedroom and bed to sleep for a couple more hours. For many years, by his own choice, he has slept on the settee, as he knows how important having my nightly 11 hrs of sleep are and with his ability to snore so loudly that even through a wall, I can still hear him, sleeping together doesn’t really work as neither of us get much sleep. As usual I don’t think he was really listening to me as I was asking him if he was going to bed as I would go through and sort the bed before he did. One of my pillows hangs off the back of the bed, but to lower the mattress, he has to move them, the problem is he can’t resist fluffing them into a pile, all I wanted was to slide them down the bed and not have them fluffed, I got my head bitten off, again. It is strange just how long two people can live together, but still make the same stupid mistakes over and over again, but I guess the rest of life is no different, if I think through my years, I see too many things that somehow I just didn’t learn my lessons. Be honest, I’m sure you are just the same.

I doubt, even if by some miracle that I live to be 100, I will still be making one mistake in life that I just can’t escape, reliving the past over and over again in my head. I don’t know how many hours I have wasted, reliving conversations and situations that didn’t turn out quite as I wanted, or where the other person has somehow taken what I said totally wrongly. Adam was the first person I have ever met who owned up to the same issues, he too is just as bad as I am and like me he to was still worrying over things so long ago that he didn’t even know any of the people concerned any longer. I had gone around for years thinking it was just me, as on the odd occasion where I have returned to the person concerned and asked them about it, they have either brushed it aside saying it didn’t matter, or looked totally confused as they couldn’t even remember the event I was talking about, but it doesn’t stop me beating myself up from time to time for my stupidity for not handling things better at the time. I guess that it could be viewed in many ways from the fact we are both caring people, through to the fact we have both been through violent traumatic events, that would leave anyone questioning why me, what did I do? I realised recently that nearly all of the situations I am talking about were all with people who for some reason or other, had a level of power over me, as in they were all bosses, or people I cared deeply about, apart from one group, they are all doctors. I know I have written before about how my upbringing instilled this state of having to accept what people in any of the traditional figures of authority said or did, without any argument, but I hadn’t realised just how deep that had gone, or how many still live in my head. Once I had picked up on the group, it took seconds for my brain to throw up situation after situation where if I had just fought my side, like I eventually did, I might have been diagnosed earlier. My parents really do have a lot to answer for, probably not just mine either, I am sure that Teressa has her own list as well. Every time I go to see a hospital consultant, I go in with this list of things to say, questions to ask and answers I want without any of their fluff, but fluff is what I normally leave with and I always thank them for it, politeness to the extreme. I guess that is why I have put so much faith into my GP, he is the only one that actually listens to what I say and responds, to the extreme of in the past picking books of his shelf to show me diagrams and details I wanted to know. I didn’t realise fully thought until Friday night just how much faith I have put into him and how my health is tied to him alone.

Let me say quickly this wasn’t the first time, but it was the first time that I really noticed the thought going through my mind and stopped myself for a second to question it. What I thought was, “I just hope that my body doesn’t do anything extreme as that’s the doctor’s closed until Monday.” It wasn’t just the words, there was a feeling of fear connected to it, a fear of having to be taken out of the house and having to go to A&E, then wait for hours to be just shoved on a ward as they don’t know what to do for me as I have MS, or being sent home with an appointment to go back that week, meaning another trip out. I have been dreading the weekend for quite a while now, as my GP is the only person who will come out the house if I need to actually see him, not just talk. I had decided a long time ago that if anything happened at night, if it were at all possible I would wait until the morning to phone for assistance, for all the same reasons, the NHS just isn’t geared up for dealing with the housebound. For example, if I fell and cut myself and the cut needed a stitch, well rather than a medic coming here and sticking a butterfly on it or putting in a couple of stitches, something which would be both time and cost effect. I would have to have a full ambulance crew & a stair climber, plus hours of waiting, draining me further of strength and energy, then another crew to bring me home. It’s total madness, the amount of money that would all cost, when one paramedic or one doctor in a car could sort the whole thing in minutes, plus save a fortune. If I had a heart attack, well that is clearly a different story, but there is so much that could be done at home without making our health worse. For it to have got to the point that I am now dreading the hours I don’t have my GP on call, tells me there are thousands out there in the same position, if not millions and especially the elderly. How many are sitting there right now in their homes, possibly with serious conditions that should be treated now, not calling for help, simply because of the system.

I am beginning to realise just how bad the care for people like myself is, it did always worry me, from the point I received my diagnosis and I realised what my future was, but like so much else I swept it under the carpet, with I will deal with that when it arrives. Well it has arrived and I am in the position I feared and nothing has changed, but I don’t know what to do about it, other than make some kind of stand, which to be honest isn’t something I have the strength left to do. I had this stupid idea that somehow the world might move faster than my health ever could and that by now it would all be simple, a system there that recognised the issues and had the solutions, it hasn’t. The why is so easy to see as well, we the housebound are easy to ignore, it’s not like we can protest outside their offices, or turn up at meetings, we are the invisible in every way.


Please read my blog from 2 years ago today – 16/11/12 – The gaps that are found

I have noticed something in the last few days that has made me smile to myself and even go as far as the odd snigger. I hadn’t noticed this but I guess like many other things it has sneaked up on my slowly, but I seem to now have long complex conversations with myself in my mind. I know we all do it to some extent but I now hold and rehearse constantly, the less able I am to put those……