The facts about people

It still feels like every day is 10 hours too short and that I am no sooner out of my bed and I’m back there again. It has been such a strange week for me as Laura, my main carer, has been on holiday and I have had the joy of trying to get along with a complete stranger again. It could have been worse, as they wanted to send me not one new person but two, as Maureen, Laura’s replacement, couldn’t cover all the days. I quite simply couldn’t face that. The stress of one stranger had been more than enough, and I couldn’t face the idea of yet another one so soon. I know that to some that simply doesn’t make any sense. What could possibly be so difficult about having another person here to look after me, especially when there were several days separating them? For me, that’s a complex thing to answer, as it is a feeling that has appeared over the last few years. Having to say “no” to the agency was a simple to justify in my head. What is the point of having someone in your home to do things for you, when you have to be with them every second telling them what needs doing and how to do it. As Maureen was to cover all the other days, well that made sense, but someone else for just one day, that made none. It is the other part that is really so difficult to explain.

I have almost always found both strangers and crowds difficult. Which OK sound strange from a self-proclaimed extrovert. If you had seen the way I dress and acted back in the early 90’s, well you would never have guessed that inside that gregarious DJ, was someone who was shit scared nearly all the time. I had learned that if I put on a show, that that act allowed me to not show the truth. My work protected me from everything else, not just because there were bouncers all over the place, but my DJ booth meant I lived in a perfectly protected zone, one that no one else ever enters uninvited. Admittedly, those 7 years of working as a DJ allowed me to be the most extreme version of me, but that act started long before and still goes on to this day. When I don’t know people, and I am forced to be around them, well I panic, I get into a muddle, one that my health has now made so obvious, that I can’t bear having to go through it at all. These days I stutter, get wound up, drop things, forget not just my words but what I am doing and far more. It hurts, really hurts to be exposed in that way. This is the reason that I go nowhere without Adam by my side. But asking Adam to come home, to protect me and to keep my carer in line, well that would have been really mad.

I have often wondered if it is just me that has found that living with a chronic illness somehow magnifies all the quirks of our personality. Mind you, for me that is hard to know really which is which, as I was 21 when they think that this illness first got hold of me and who I was before that, was a child. But my inability to deal with strangers is something that has really grown over the years and the idea of being caught here in my home alone with one, that really freaks me out. It’s crazy, I know that, but emotions are always the one thing that none of us have total control over.

When Maureen arrived on the first day, well there I was all smiles and ready to show her how everything worked and what I needed her to do for me. What she didn’t see was the wreck who had been building herself up to being able to just say “hello” for the past few days. Once I had shown her everything, although I was only going to have 5 mins alone, well, I couldn’t get out of the kitchen fast enough and back through here to hide behind my computer while she finished things off. On day two, I let her in and hid straight away. Why I thought she would remember and get everything right without me, I don’t know, but that was my hope. I was of course wrong. She kept appearing in the living room to ask this question or that one and after she left, I found mistakes all over the place. She is due back tomorrow to make even more mistakes, as I simply can’t deal with the idea of taking her through it all step by step again. I will mention the biggest ones but I am still going to let her get on with it as I’d rather have shoddy than spend another half hour shaking and stuttering as I lose track of everything else again. When my health didn’t get in the way, didn’t exaggerate my every action, I would have acted my way out of this mess, but now, now I just hide and count the minutes until the whole mess is over with.

It took me about a month to totally settle myself to Laura, but it did happen eventually, and now, I fear the day that she will tell me she is moving on. I know it will happen, as she is a bright intelligent woman who has a degree and without a doubt, one day she will see that she really could be doing something that actually pays her a decent living wage. It is so wrong that our carers are paid so badly. I can’t afford to employ her directly and anyway I don’t need her 24/7. So I know the day will come when I have to face having to start all over again and I so hate that idea, especially after this week.

Laura has told me several times that she really can’t manage all the bills on what she earns. So in a bid to keep her here as long as possible and to help her out a little financially while Adam was unable to do the housework, I employed her several times outside of the system, to clean our flat for us. When I told my friend Jake all this he suddenly came up with an offer of cleaning work for her, from one of his friends. They told their friends and the ball started moving. She is now cleaning three of his friend’s houses every week. Money in her pocket on top of what the agency pays her and hopefully enough to stop her thinking of leaving me yet, but I’m not stupid enough to think it will last for ever. Well, nothing ever does.

I’m back

It has been some time since I last made an addition to my blog and I apologise to any who have been fretting as to my well being. I assure you all that I am fine, I quite simply found myself suddenly not wanting to write. Every time that I tried, and believe me I did, nothing came out, there was nothing there. After 5 years of constant updates, not only did I have nothing to say, but I had this great desire to simply take a break, to not write, to do anything other than that one thing, so that’s exactly what I did. I never intended for one second for it to be as long as it has been, but what is it they say about best-laid plans?

The first couple of weeks went just as I thought they would. I found silly games to play online until I found one that pulled me in and suddenly I was addicted. Days passed with easy, so much ease that it was almost scary. I think it was around the start of week three when Adam suddenly had an accident that damaged his back severely. It wasn’t like he did anything that you would expect to cause such an injury, he simply stood up from sitting on the settee and that was it, he was in excruciating pain. He couldn’t stand, he couldn’t sit and he couldn’t walk without pain like he had never known before. Suddenly, he was in my world.

Like many out there, he thought he knew, especially as he had witnessed what has been happening to me, over the past 17 years, exactly what chronic pain was. As each day passed, the pain he was in was wearing him down but still his admiration for the way I cope grew, yet oddly, he was reluctant to take any of my advice. Just as I once had been, he was determined to work it all out for himself and I became more and more helpless just watching him struggle. Unlike me, Adam has this thing about not taking tablets. For as long as I have known him, it has been a battle just to get him to take an aspirin, convinced that it would do damage far worse than what it would cure. It was the middle of week three, and only because his doctor had prescribed them that he started to take high levels of ibuprofen and codeine, but only when the pain was at it’s worst.

Adam has been my carer for so long that finding myself having to care for him the best I could, was hard. Not the caring bit as I totally love him, but there is so little that someone can do from a wheelchair to aid another, especially someone who is finding it hard to walk. Yes, because of my electric chair I could do much of the running around in the house, but I was totally unable to support or aid even one of his steps where ever he had to take it, and the emotional support that he needed was draining. My energy levels aren’t great and when you have to repeat over and over again the same things you said just an hour ago, well I simply didn’t always have the patience he needed from me, and he needed a lot of it. I found those five weeks of holding him up, amazingly hard work. Not too surprisingly, there were a couple of points when I did snap, like the day through his tears he said: “What am I going to do if I can’t ever walk again?” I did kind of go through the roof on that one, but I think I was justified.

After weeks of physio and doctors prodding and checking, he is now fully mobile again, but the support is still going on as they discovered halfway through his recovery that he has high blood pressure and I do mean high!. He had been at work when he started to feel really ill and he phoned me to tell me what was going on. He’d only been back at work for about a week, but all I could do was tell him to speak to his boss, then come home. It was over an hour before he phoned me again. His boss had called one of the nurses to his office and she had taken his blood pressure. Straight away he was sent out to the main hospital in Glasgow for an ECG, why that couldn’t be done in the one he works in, I still don’t understand. By the time he got there, it had lowered, but was far from low enough.

We have been going from one medical disaster to another, mine being fitted around his as they occurred. As I said, don’t worry, I’m OK, for me, it was just all the normal stuff that makes up my life, but finding the time to relax or to rebuild the energy that I needed to get through each day, has been hard and sometimes impossible. At times I have been so tired that doing anything other than playing those banal games, has been totally beyond me. I have sat here hour after hour, connecting numbers, stacking different sized boxes, eating snakes and all those other free games that are out there. I have sat here quiet simply happy to let the hours tick by and looking forwards to when I could next just go to my bed and sleep. Because Adams health has generally been so good, I had forgotten what it was like trying to be me alongside being his carer. I know there are a lot of people out there who do this daily, handle their own health along with that of their partners, but it’s all new for me.

High blood pressure is a chronic condition that can be handled with ease by taking medication. Not something that Adam finds easy and has no intention of doing for the rest of his life. He knows that he has to lose weight, something he is doing well at, he is already over a stone down but upping his exercise levels isn’t going so well. I am finding it so hard not to nag him, as I know he doesn’t respond well to that, either mentally or with the level of his blood pressure. I can see now that he has probably had this problem in the background for a while as trust me, I can see when it flares. I know that if I could just get out there with him, go swimming with him or just on long walks, that it would be easier for him, but I’m trapped here in the house unable to support him any more than do. I am such and easy excuse for him to use, as doing any of those things that are good for him, would mean leaving me behind and once again alone and he doesn’t like that. Somehow we will work it out, we always do.

So now you know what has kept me away. What was supposed to be a short restful holiday, has been anything but, but I’m back and I’m happy to be here.