I had to laugh to myself last night when Adam suddenly asked me where I had put the stuff I had bought to fix the toilet roll holder which is handing off the wall in the bathroom. Not since the day I told him I had bought it, about three weeks ago, had he even mentioned it, so there was no doubt in my mind that that meant he had read my post. I had hidden it in one of the draws in the living room so that he couldn’t do his usual, hide it under the kitchen table in the hope that out of sight meant forgotten. He said he wanted it to be on the kitchen counter so it would remind him that the jog needed doing, but it wasn’t done last night as once discussed what needed to be done, he seemed to go off the idea, instead he started working on changing over the electric can opener, that was supposed to have been done a couple of months ago. At least it is one job done of the list, but I couldn’t not tell him when he sat down the rest of the evening about a tweet I had received following my post about the jobs not being done, it said: “Pamela, if a man says a job will be don it will be, he doesn’t need reminding every 6 months”, of course I got it wrong three times, which kind of spoilt its humour. I am just hoping that this is the start of not just the short list of jobs that are waiting to be done, but also the longer one, some of which have been put off for years, but as long as the jobs which stop heat loss from the house before the worst of winter hits, I will be happy.
The spasms in my diaphragm woke me this morning, I went from sound asleep to not quite sitting up in bed, more curled upwards in bed, as always my first reaction was to look at the clock then to try and work out what woke me if it was the alarm. I had barely turned my head toward the clock when the reason made itself known, there was no doubt at all as to what had woken me, as I lay back it cramped in harder, almost as though it wanted to remind me that horizontal isn’t good. I didn’t listen, it is one thing that I have learned to ignore over the years, warnings that try to stop me from sleeping, there was only half an hour to go so I was prepared to just lie there and wait. The alarm sounding proved that I had actually drifted back to sleep for a while at least and to my surprise the pain had gone. I had great trouble getting myself dressed today, for some reason I had left my pyjama trousers in a muddle, not there normal position on the floor that requires no more effort than to simply put my feet into the holes left by them the night before and then to pull them up. No I had left a muddle and one that when you are no truly awake isn’t the kind of mind test you really need, I tried to fix it and made it worse, landing up with one leg inside the other and no brain to workout which. Getting agitated is never a good way to start the day, but I honestly couldn’t sort it out, everything I did just somehow made things worse, at one point I was sat there almost in tears as I couldn’t believe that a pair of trousers were getting the better of me, so I stopped and sat there for a minute, just thinking, well trying to. Eventually I worked it out and feeling as stupid as possible, but at least dressed I headed to the loo, somewhere I was desperate to get too, probably part of the reason I got so wound up.
I have noticed it often in the past year or so that I am slowly getting more and more wound up by things, as I said the other day frustration is something I deal that well with, but when like this morning it moves rapidly past that point where I can logically pull back relax and try again, well the result is tears. My emotional controls have been shot for a long time, but as I mentioned recently, they seem to be getting closer and closer to the surface. To want to cry just because your trousers are in a knot is pure madness. It is beginning to feel like the slightest thing is becoming a reason to just gush water from my eyes, I lost count the number of times that I felt them starting while we were out on Thursday, luckily I had the strength to pull them back and to move on, but I was terribly aware of them, especially when we were chatting to the doctor whilst waiting for the ambulance. I got into a couple of mental knots, when I couldn’t make my point as my brain would only come up with one really bad example, the frustration of that added to the pressure I felt as I had a tame doctor willing to listen, plus the pressure of just being out, was a disaster waiting to happen. Luckily Adam was there to protect me and he did so several times that day, but it has made me face a fact that I have been hiding form, even though I now see that Adam was very aware of.
When the ambulance had arrived to take us to the hospital and we were doing our usual of trying to talk them into letting Adam come in the Ambulance with me, rather than having to call a taxi and having to catch up with us, I found my self saying that I needed him with me not because of my physically state as they thought, but I need him with me because I can’t cope mentally without him. I remember saying it whiles looking at Adam and felt the tears starting to form as I realised just what I had admitted. Looking back Adam has know it for ages, he always takes time off when someone is going to be here, or if I am going anywhere, he doesn’t like leaving me to deal with people, because he knows that I so often can’t. It is a hard thing to admit that you can’t deal with something as simple as an Ambulance trip from your house to the hospital, simply because you get agitated and panicky, because your not at home. I knew perfectly well that that was the truth, probably as long as Adam has but I just hadn’t admitted it and until you do, well it’s not real is it. Just like my total inability to take a shower or my night time medicines without him being my personal nagger, he is also my personal defence unit, my additional brain and my physical prop when needed. A couple of days ago someone on twitter thanked me for adding agoraphobia onto the list of hash tags I put under my links to my blog, I did it a few weeks ago when the possibility of having to go to the hospital first appeared in my mind. I didn’t put it there because I think I am agoraphobic, but because I suddenly understood it, maybe not fully, but well enough to realise it is as much a limiting illness and any other chronic condition. I can go out there by myself, but I know without a doubt that I would be so lost, so confused and so wound up that I wouldn’t survive long without Adam beside me to reassure me he is there as my voice and my brain when ever they choose to disown me.
Admitting the truth about anything that personal is always going to difficult, none of us want to admit that we are a shadow of the person we once where, which is madness. No one would take a second thought about having a plaster cast, or using any aid once there is no other way, be it walking stick or wheelchair, so when it is our brains, what is so hard about just saying I can’t do this alone, I need others to help me. The stigma is huge and that is something that needs breaking and not just in two, but into a million little pieces that can never be reassembled.
Read my blog from 2 years ago today – 14/11/12 – Who am I now?
Last night I found myself going over and over the same question in my mind, probably a question we all ask ourselves at times and probably one we should ask more often, “Who am I”. Having declared so strongly just a few days ago that “I am still in here”, it suppose it was the logical question to follow it. I don’t think……