Who am I

Unbelievably I am still locked out of my Twitter account, despite contacting their support team nearly 24 hrs ago. On the good side although I can’t interact with my followers or return the follow of my new followers, I am still able to send out everything through the scheduler, so to the majority it will look just the same as usual with none of my normal content missing, but I hate not being able to not interact even by clicking the “favourite” button. Despite getting wound up about it for the first half hour, I then just told myself there was nothing I can do but wait and wait is what I have done, plus send another email to them this morning to let them know it still isn’t working.

I was supposed to be at the dental hospital this morning, but for once, one of my minor wishes has come true. Thursday morning was the last time I had any pus on the back of my throat when I woke up, after that it was dry, there was still a tiny white dot there on Thursday but the swelling was going down and things did look better. Yesterday afternoon, I declared the ‘Thing’ dead! Two days of nothing bad happening and the fact that although I can still feel some tiny lumps, scar tissue, they are actually so small that I can’t actually see them. I decided that I was going to look really stupid turning up to show them nothing and that the best thing to do was just cancel the appointment and the ambulance. I actually cancelled that yesterday, as I expected with it being a Sunday I simply got an answer machine and a load of buttons to push just to get there. Adam was here and he said that it was the same when he booked it, clearly it is a new system that has been set up in the 18 months since I last used it, but I can’t help thinking that it is a really bad thing. I know from my job, as I was responsible for the programming of the switch, that the use of these selection menus is great for call centres as it means people get to the right person and the time being spent passing customers around it reduces most customers stress levels, especially useful with it is someone who wants customer services. Where it falls down is with the elderly, many find them difficult to listen too, due to lack of concentration and poor hearing, they also are inclined to panic about hitting the wrong button, then do. The patients transport service is set up to take people to appointments who are unable to get there any other way, like me, I need a stair-climber to get down to street level and in some places to get me into the building where my appointment is. The majority of their passengers are the elderly, the very people who find the whole thing too difficult, I have to say that my concentration problems does at times mean I find them just too difficult and hang up, there could all too easily fall through the net and not attend the appointments they need to.

Our phone just rang, I was shocked to see the display saying it was my doctor calling, the hospital had phoned him as I had cancelled the appointment, they seem to have decided between themselves that I need to be seen. He put it along the line that since I hadn’t been to a dentist since I have been housebound, that it might be a good idea to at least go for a dental check-up, I did feel rather ganged-up upon, so I have agreed to go but it needs to be in a couple of weeks time so that we can make proper arrangement with Adams work and so on, rather than this rushed last minute affair. I guess I should have just gone today, but I still think it will be a waste of everyone’s time as there is virtually nothing to see any longer, I do have to agree that I need my teeth seen to, as I have managed to break two in the last seven years and I know that one at least will land up being pulled as there isn’t much there for anyone to work on. I guess this weekend was doomed to be one of those things, just not going the way that I expect them to go.

It is one of the odd things that I have noticed since I have been ill, I no longer deal well in any way with being told what to do, even if it is done nicely. I know that could be for several reason, firstly and most likely due to the damage to my frontal lobe, that causes you to react to things in ways you would never have done before, it controls personality expression and our responses to any situation that might appear, along with our ability to make good decisions, as in not putting ourselves in danger. It is also the place where both our long and short-term memories are stored, well more lost than stored these days, it is our centre of reasoning and without all these things working correctly or not at all at times, it is easy to see why life is difficult. My sudden desire to start crying as I put the phone down, was clearly not in my control and it was also something I wouldn’t have even felt years ago. I suppose it could also be argued that it may well have been behind my cancelling the appointment as clearly neither my doctor or the hospital think it is a good idea not to go, they seem to think it needs to be seen, so was I making a bad decision?

The second reason is even simpler, I have lost so much control over my life, that anyone trying to get me to do something I don’t want to, feels like I am losing even more, control. As an adult we are expected to be in control of our own lives, not having others making decisions without our input, or our input being run over totally and ignored or manipulated. I suppose there could be a mix of all those things, but the result is a desperate need to understand why and what is happening. I can have all the facts laid out in front of me, just as I have laid them out for you and I can apply all the logic I want to situations like this, but it doesn’t change how I feel. When there are alien emotions and feelings, that you know are wrong without being able to put your finger on them, you do really feel like you are going mad, another part of loosing control.

I guess I have spent far too much of my time in the past few years trying to get to grips with the things that are happening to me mentally. It is nothing like the physical changes, those are easy to understand they are real, tangible and can be documented in ways others can understand. The loss of your own mind, your own abilities and capabilities, well they are so different and so fine that explaining them, is like trying to catch a bubble, I can see it, run my hand around it, but just as I touch it, it vanishes and I am left struggling to find the next word or sentence that anyone would make sense of in any way. Our minds are us, it’s a simple concept, one we all understand, but when parts of it fail us, then who are we? I haven’t vanished, physically I am still here, mentally there is less and less of me as a person, I am loosing me. I may be able to write, to reason and to sound like a person with everything intact, but the truth is, I am not who I once was and it’s scary being inside watching it happen with no way out or of putting on the brakes.


Please read my blog from 2 years ago today – 20/10/12 – Touching the floor

I was looking for something else when I came across this picture and it actually really shows just how I am feeling just now. It is all rather dark at the minute but this morning that crack in the clouds has appeared and I feel lighter in myself. I am not sure where the change came from but when I woke……


To my surprise yesterday afternoon I had not one but two phone calls, our phone seldom rings as being ex-directory and on the Telephone Preference List for over 15 years, we are not bombarded by nuisance calls. I am so glad that I have been working on getting rid of all companies that think they have a right to call anyone whenever they want, not even companies I have accounts with call, mail or even email me as I have kept everything as tight as I can against it ever happening. For our phone to ring, it has to be someone who knows us, the first one I answered without a second’s thought as it the display said it was my doctors and as I wasn’t expecting them to call, I was a little surprised. It was the receptionist just making a call for me to go in for my flu jab, despite the fact I have had asthma for years and now COPD, I haven’t had the jab since I became housebound, so I was a little surprised by the call. I explained that I was housebound to the receptionist and that I haven’t had the jab for years and she seemed a little flustered as to what she should do, but said she would tell the district nurse, then she hung up. I am guessing that I will hear no more about it as I vaguely remember a similar call about 6 years ago, I think that it is my recent diagnosis with COPD that has put me back on the list. It left me wondering about why no one has come out to give me the jab as both Asthma and COPD are equally reasons why I should be protected against the flu I may not be out there able to pick up the illness, but people do come here and any of them could pass it on to me. With Adam working at a hospital he is given the jab routinely so that access should be closed, but not all are. I will wait to see what happens, but I am beginning to get the impression that just maybe because I am a quite patient who contact them rarely other than for my repeat prescription, that some of the things that should be done, like taking my blood pressure every three months due to my being on HRT, taking a swab of the ‘thing’ before referring me to a hospital and the flue jab, are just not being done because someone would have to come to me.

The second call I had, well that one is much more straight forward, it was from the department that look after the bed elevator, they come out every now and then to just check that everything is working properly and that it hasn’t suddenly developed a fault that might cause a fire or something. It took them about 20 minutes the last time they called, but I have to say there is something un-easing about a total stranger being in your bedroom, fiddling with something under your bed. In fact he has just arrived and is through there right now, at least unlike the last one he didn’t start moaning about the fact that we have very low lighting in our bedroom, I have never seen a reason to have strong bright lights in there, it isn’t as though you need it for anything? Most of us know how to get dressed in the dark if needs be, so why have spotlight level brightness? Personally, I can’t actually remember the last time, other than for workmen that I have even turned any light on in there, I stumble and wobble my way in to go to bed and stumble and wobble my way back out, lights don’t help in that process at all. He just called for me to go through and sign off that he has been here and has now gone, he was only here for about 5 minutes, it leaves me wondering who did their job as it was supposed to be done and which one is swinging the lead? Getting up and down twice in a such a short period of time has done nothing that was good for my legs, they just don’t know how to deal with it.

We all take standing up as a simple act, one that we do without the slightest thought, well that slowly goes away as time goes on for all of us, which is why it is one of the parts of PRMS that leaves you feeling old before your time. I am just 53, if you ignore knowing that fact, my long purple hair and any other clues to my true age and just watched how my body works over a day, I have no doubt that I would fall into the age group of somewhere between 65 and 85, well some are more sprightly than others. If I were to base it against my grandmother who died at 86, she was more agile two weeks before she died, than I am today, chronic illness doesn’t just steal your health, it steals your life and your age, doing so with far to much ease. Just letting someone into and out again of my home has left me with thigh and calf muscles that are burning from the excursion, I haven’t run a mile, or walked 5, just a mere 20 yards at the most. When I fist sat down again my lower spine when nuts, throwing 3 fast strong spasms at me that shook my body as though I was a marionette on strings that were being tugged at violently. They didn’t hurt me, the pain that should have been there covered by the drugs I live on, they just throw me around a bit, leaving me glad no one was there to see it, as I know it must have looked rather odd, I guess it always does.

I think all of us find it hard to age, watching the odd grey hair turn into hundreds and fine lines into folds, to put on the years that time has lined up for us though is one thing, having them torn away is something totally different. So OK PRMS hasn’t made me go grey any sooner than I would have, but I stopped worrying about that when I found a three long grey hairs on my daughters head when she was just five, but it does change your skin, remove your muscle tone and make everything head north prematurely, with no way of ever dragging them back. It’s not like I can just start doing exercise and work the muscles back to how they were 10 years ago, I can’t even manage to loose any weight, as weight comes with every year you spend sat down and weight alone is ageing. Ageing faster than others isn’t something that we can avoid or change, it is also something that no one tells you is going to happen to you. I know that if I had know in advance that it might have changed little, but I might have made more of an effort to do the right things that bit longer, pushed myself to exercise that bit more when I still could have. Ultimately would I have really changed much, I don’t know, but I would at least have liked to be forewarned and given the chance to try.


Please read my blog from 2 years ago today – 17/10/12 – Decaying slowly

I have tried for the past few days not to write about or dwell on the pain that I feel in my legs, it hasn’t gone away but I was trying hard to distract myself in the hope that its impact on me would be lessened, it has made no difference at all. I suspect it was a stupid idea but well even……