It goes on…..

The door bell rang yesterday afternoon, it wasn’t that long after I had spoken to Adam as he wasn’t coming home for lunch yesterday, but he always likes to check I am alright. I knew from the way it was rung that it was the postman, so I stood up and headed out into the hall to let him into the block. We have an old fashioned intercom system that looks like a phone on the wall and as I reached up to lift the receiver, I felt my hand stop about half an inch from its surface and the muscles throughout me tighten. I had to mentally kick myself into actually doing what I was there for, to lift that phone and say hello, yet I hesitated, it was just for a second, not any longer but in that second I knew what was happening and I wasn’t going to let it, Monday had clearly had a bigger impact on me than I thought it had when I was writing yesterday. Then I was still angry, still wanting to make everyone aware that the world still has morons in it who don’t think at all about the effects of their own ignorance when they aim at those who can’t do anything about it at the time, other than be angry. I was angry for a thousand reasons, but most of all that I had been put in that position due to all the things that are wrong in this world from my own health to the fact that there are people willing to be so vicious toward another human being, all that anger changed in that second at the intercom.

I haven’t felt that way for a long time, in fact, the last time was not long after Adam and I had become engaged and moved into what was our first home together, then it was someone I knew that was scaring the hell out of, an ex-boyfriend who had started stalking me. I remember feeling that same moment of fear every time I saw what might be his car on the same road as I was on, or possibly himself when I was out and about. It was the identical moment of hesitation before pushing the bravado button and acting totally normally so if it was him, well hopefully he would see that I wasn’t bothered. I wasn’t expecting it to be the Asda driver back at my front door, but it was that action that had let him into my home, I had let him in here by answering the intercom. Even when I returned to the living room, I was still totally unsettled and it took me a while to get on with things, but I couldn’t help feeling it over and over again. About an hour after that the phone rang and this time it was Asda’s, I went over with them what happened and how I had been left feeling yesterday, I also gave the web link so they could read everything I wrote yesterday, even though it was an abbreviated version of everything that happened, I wanted them to read it as I wanted them to put themselves in my shoes. The manager of the delivery drivers was off yesterday, but the person I spoke to was totally apologetic for his behaviour and will speak to his manager today and they will investigate it further before calling me back.

I didn’t tell Adam when he first came home about what had happened in the hallway, he had already told me that he had plans to do his weights in the kitchen last night and I knew that if I told him, he would want to sit and talk about it and that wasn’t fair, I wasn’t going to let it spoil his day as well. I had spent the rest of the afternoon just feeling that wave every few minutes it just appeared out of the blue, I didn’t even manage to sleep, despite wanting to if just to block it all out. The one thing that brightened my day was all the lovely tweets and comments that I received, it really did help just to know that total strangers were as disgusted by the whole thing as I was. I did tell Adam about the phone call though, he like me are quite happy at the minute to wait and see just what they have to say, although she had said she was going to talk to his manager today, I know that a lot of the drivers only work part time, so they may not be able to talk to him today, but we will see. It was about half an hour before I was due to go to bed when Adam came through to the living room having put all his weights away, as he ate his sandwich which he had brought with him, I told him about the freezing instance, he clicked immediately that it was the fact I had let the guy in by answering the intercom without my having to tell him and just as I expected he wanted to talk it through. I was the one who cut it short, as I didn’t see the value of going over it, it had happened, it was a sign that it had all had a bigger impact on me than either of us thought and it was over. As we were saying good night, he announced that he thought it was a good idea if he was here when the shopping arrived in future, which was a statement I had been waiting for, but as I said to him, this is one driver out of hundreds who have been here, one bad person, doesn’t mean they all will be. As soon as I shut the bedroom door, I was once again in floods of tears, it was the second night in a row that this man has left me crying myself to sleep and the second night in a row where my sleep has been disturbed and not the normal escape that I have daily.

Bravado may have gotten me through the verbal battle of Monday, but bravado only works when there is someone there to see it. It isn’t until we are alone and the anger has gone that we start to really feel the true effects of anything. I never thought that a single person that I didn’t even know could make me feel this way, but I do now. I thought myself stronger than that, I thought that no one who could make me feel that way without laying a finger on me and that is the other horrid thing, those feeling drag out of you memories of the times in the past where you weren’t quite so lucky. That’s why sleep hasn’t been it’s normal joy, between the pain and the memory of faces and places that I thought were once packed away, then forgiven and released, appeared and taunted me again. The two crates in the doorway had given me the freedom to defend myself verbally as just as when I was a DJ, my DJ booth was my kingdom and I could do anything within it in safety, stepping out of it and I was a different person, vulnerable and ready to run, those crates gave me that confidence back and my freedom. If they hadn’t been there, I doubt I would have said half of what I did in my defence and I know without a doubt that the tears would have arrived much much sooner than they did.

This morning, I am numb in every way other than to the pain in my body, I have been living on booster pills since he left and I doubt I will be living without them at any point today. Delaid reactions are often the worst as they appear from nowhere, if the postman hadn’t called yesterday, I doubt I would have felt it until he next did as it was that simple hand action that released it all. At least now I am aware of it and I know that I can answer the intercom without anything horrid to follow, but what I would really like and I think would be a wonderful punishment for him, to be made to sit and read not just this post, but every single post I have written in at least the past month, maybe, just maybe he might learn not only what he has done, but he might also learn that people aren’t always as fit as they appear and that one day in health has nothing to do with the next.

Read my blog from 2 years ago today – 15/04/13 – Steps of grief and renewal >

A new week so here’s hoping that it is also a new start with changes in it’s wings, well as long as they are in the right direction, lol. It was a kind of strange weekend, almost like it wasn’t one if that makes any sense. Adam was here as always, but the entire two days just seemed to pass without any impact on me. I got up, I wrote, I slept, I watched TV, I ended my day in bed, then I did the same again. Life can be like that occasionally…………


I know it is totally my own fault and climbing onto my stool and the the worktop, were clearly something I shouldn’t have done on Monday, but my body is really making me pay for it. I don’t know why I was so determined to fix those stupid curtains, it’s not like it hadn’t already waited several months to be fixed, but I was just seeing red and was determined that one from the list of small jobs waiting to be done, was actually completed. It’s really hard to day in day out see all the things that if I were fit and healthy wouldn’t have waited more than a few hours to have been put right, taunting me as an unrequired reminder of what I can’t do. I also know which curtain it was that caused all the muscular screaming, it was the kitchen. I don’t think it was so much the kneeling on the perching stool, then standing and stepping forward onto the counter that did the damage, it was the coming back down. Getting up there was really easy as I had loads of things to hold onto and pull myself up, but getting down those same assets turn into obstetrical. I couldn’t step down backwardly, as not being able to see my feet made it really quite scary, I had to face out into the room to make the step out onto the stool, whilst twisting to get my shoulders past a wall cabinet, without banging myself off a section of wall. I don’t know why I was such a scaredy cat over that step out, as the stool was so well wedged in place that I had to really yank at it to remove it, but that step hurt my pelvic muscles and the stool pulling, the pain in my arm pits and upper arms. I have no doubt that that was the move that did the damage and ached all day yesterday and was actually worse when I woke this morning, on the good side, it has settled well, to a lower level of ache than before.

There is so much that I have slowly adapted to and learned that I just can’t do any longer, but I have one huge issue that I have never to date managed to find a way round, I am human. I would almost guarantee that every single person who lives with disability, will loose it occasionally and be like I was determined to do just one thing, one silly little thing that just has to be done. So OK may be I didn’t pick a particularity good item to set my sights on, if I am honest, I actually think it could have been any of them, but it was on the surface such a silly little thing, that it played on my mind more than some of the others. In may ways it is like being a child, looking at a world where there are all these things with a tag on them, that tag that says “one day”, one day when you are older or bigger, or all the other things you hear over and over again, my tags no longer say “one day” they now all read “NEVER”. Just like a child, I also look at those tags and most of the time accept them, but at times I look with this spark of mischief that says, just watch me. It doesn’t matter how well you adapt to living with your conditions, or being housebound, when it comes to the point when nearly everything in sight has that tag attached, well you do get wound up by it. I have adjusted to having to have things that I use frequently around me, rather than where I want them, hidden and tidy, I have adjusted to Adams style of housework rather than mine, to not being able to go past my front door as all that is out there are stairs, stairs I might get down one or two flights, but I wouldn’t get any further or back up again. I have adjusted to a life that I could never have imagined for myself, as I couldn’t have imagined anyone living as I do, but adjusting doesn’t mean liking.

I am so lucky that my reaction to all this isn’t depression, I can see how it so easily could be, it could also so easily turn into anger or a dozen other things, but it turns into something worse for me, frustration. I guess we all have our own personal nemesis when our lives and freedom have been slowly stripped from us, for me it has to be frustration, as it is one of the things almost guaranteed to make everything worse and there is absolutely no way of avoiding. The problem with frustration caused by the things that you can’t do, is it drives you to keep trying and the more you try and fail, the more the frustration grows, if you don’t spot it or catch it in time, slowly your muscles start to tighten and the tighter they get, the more spasm they trigger and the worse the pain gets. Like most of the things we do to ourselves the answer is to simply stop, relax and let calmness return before trying again, simple I know but as I said, I am human, I don’t always stop in time and then the whole things is set to explode. The explosion isn’t into anger, in fact I would say it’s more like the explosion of a detonator, it starts me off on a physical downwards slope and when the pain builds I can do even less and I get more frustrated by the whole thing. There is only one way to avoid it all and that is to do absolutely nothing, including looking anywhere other than the TV screen, mind you my eyesight would probably wind me up before too long. These days I know that I am spending more and more time motionless, with my eyes shut, relaxing groups of muscles, or even my entire body, trying to let go of it all and if I say so myself, I have become quite good at it, but no matter how practised I become, there is always the next thing that is just waiting to start it all again. Trust me, for a once highly active and creative person that I was, to find themselves trapped in this way, without the ability to do anything other than exist, is hard, so it’s not really surprising that occasionally we push it, what’s unfair is the price we have to pay, for just a few minutes of normality.

Sometime it is harder to just live in the normal world, to be surrounded by so much that you want to do, but can’t. I defy anyone to not get frustrated by it occasionally, to not kick out at it and say dame all of you, I am going to do it. No Monday didn’t get it out of my system, if only it were that easy, but I have learned the same lesson that the previous explosion taught me, “I can’t”, but I am telling you now, I will defy those taunting tags again and probably again, until they change from “Never” into “Sorry, but”.


Please read my blog from 2 years ago today – 12/11/12 – Alternative Joy

It is hard for me to put myself in the place of a carer but I have tried often when I have seen the pain in Adams eyes, as though just looking at me is causing him pain and the tears are just below the surface. I don’t remember what the conversation was the other evening that brought that look to……