Pushing it

I destroyed myself on Tuesday, I pushed myself beyond any point that I have passed in the last few years. I was so determined to get those stupid pancakes done, that I went way beyond what I should have and I knew it with every single one that I placed in the pan and shaped. It is the first time for about 8 months that I have done this job alone. Normally, I make the dough, let it rise, them I cook the first half and then Adam the rest. Even that was a struggle the last time, so why I thought I could actually do it all alone, without some huge backlash, I don’t have the slightest idea. I was clearly in one of my stubborn modes, as there wasn’t a single reason why I couldn’t have gone to bed early, but no, even then I was still pushing myself.

Yesterday morning, even before the alarm sounded, that I was still tired. I had woken at 7 am, a point that I would have just stayed up normally, but after going to the loo, I returned to bed and fell asleep instantly. That is something that is not normal at all and I was amazed when the alarm actually sounded an hour and a half later. It even took me several attempts to pull my pyjamas on. I just couldn’t work out what was going so wrong, as I am so careful every night when I take them off, to leave them in such away, that there is nothing to think about at all, in the morning. I started by getting tied up in my top, it’s a simple drop it over my head design, but as soon as I tried to lean forward to put my trousers on, I knew it was wrong. It was on back to front and the back of the neck was cutting into my throat. I took it off, switched it around and put it back on, then it was the turn of my trousers. My luck was out there too, the first leg was fine, but when I tried to put my second leg in, it always landed up exactly where the first was. I eventually manage to work out that the elusive second leg was inside out and just flapping around. When I reached the living room, I turned the TV on and in its first light, I discovered my top was on inside out, the final proof of just exactly how awake I was.

It was a  struggle to get through the first half of the day. Telling myself that I was fine, that I was going to catch up with all the things I had missed the day before and that I would be just fine. I did manage to actually fool myself for a while, but the truth soon took over and I had to admit it. I had been destroyed and that Adam had been right last night when he said that in future, he would do the whole job for me. Yet another thing that I have to hand over to him, yet another thing that I’m not capable of doing. This isn’t laziness, this is just a fact of the illnesses that I live with. I am not up to doing the basically simple job, of makes psyllium pancakes or anything else really. I must stop calling them pancakes, as they are in fact more a griddle cake, just a rather thin one. Whatever the name, it’s another job ticked off as impossible for me to do alone any longer, without destroying myself. Even now, I’m still wiped out, my whole body objecting to just being awake and upright. But I’m still pigheaded, even when I feel like a shadow of my normal self.

I have at last managed to get 4 quotes for the cost of my funeral. I have been shocked by the differences in prices, along with their persistence of trying to push me into taking more than I want. I know that I shouldn’t really be surprised, as after all they are businesses that require to make money. The most expensive one, for just the cremation here in Glasgow, not including transport for my ashes to Aberdeen or the internment in my son’s grave, is £2700. The cheapest, which include all of my wishes and the transport of my ashes to Aberdeen, but not the cost of opening the ground, their getting that for me, is just £1000. Business or not, the difference is incredible and I actually find, unexplainable and ridiculous. The cheapest company didn’t just supply a good cost, they also took the time to read my email in detail and to answer all my questions. Unlike some, that simply tried to push me into one of their plans, which was miles away from what I was looking for. Clearly like everything else in life, even our death is worth shopping around, before we make any decision.

I had thought in the past of taking out one of those insurance plans that are constantly advertised on the TV. You know the ones that say are suitable for those who are 50 plus, and that you don’t need a medical. They may mean that you leave the cash for your funeral, but if you don’t know what those costs are, how do you know just how much, to pay in. Personally, I would recommend doing things this way around instead. It doesn’t only mean all the costs are covered, but you can make all the arrangments down to the tiny things, that you want. Then when you do die, all your partner needs to do, is make one phone call, and everything is actioned. No hassle, no not knowing what to do, who to turn to, if you have the funds required. It’s all removed and it’s all done. At worst, there might be a small sum on top, for the increased costs, that everything has over time, but my up-front payment is invested in a fund, that should cover the worst of the increases and it’s not going to bankrupt him, or leave him, even more, distressed and lost.

I have decided that once I have all the details sorted out with the funeral director, that I will put together an envelope containing them all, the funeral plan to be redeemed for their payment, the plot deeds and two letters I want to be sent to my family once I am gone. Everything in one place along with a list of the legal steps that Adam will have to take, as I have discovered over the last few days, there are several of those as well, but everything will be there, in one place. I honestly believe now, that it doesn’t matter what our wishes are, we all should do this, even if you are just 20 years old and don’t expect it to happen for years. It’s really not fair, to leave it to someone else. The simple fact that I have this process on the way, to my surprise, actually feels good and feels right. I would go as far as saying that I feel better in myself, because I know I am doing the right thing, not just for me, but for Adam and my daughter Teressa as after all, they are the ones who will be left behind. Once done, we can all get on with doing what we’re here for, living.

 

Please read my blog from 2 years ago today – 28/01/2014 – Knowing me

I woke this morning for some reason the closest to being awake than I have felt for a very long time now. I wasn’t jumping and hopping across the room or anything silly like that, I just felt reasonably refreshed as you would…..

Judgement day 1

…….but how many do I allow for. This is it, I am free of all extra drugs and it is now up to my body to do the work that they have been helping with. I have always hated this point in any illness, it feels as though someone has come along and whipped everything away just for a laugh. Having spent unknowingly the majority of my life with an autoimmune system that is playing by its own rules, all bugs have been hit or miss. I have lost count how many second rounds of antibiotics I have landed up having to take and the colour of what I am coughing up doesn’t fill me with inspiration. On the good side, I managed to go from around 10 pm last night right through until 6:30 this morning without coughing. Even Adam said that I was amazingly silent, no wheezing nothing. Since I woke unable to take a silent breath, I haven’t stopped coughing and the flow is impressive, plus odd, to say the least. All I can do is wait and see and if things show the slightest sign of closing in again, acting straight away.

Everything about today is about getting myself and my life back to a more normal pace and something closer to my routine. I say closer, as I am still in two minds about whether or not it needs changing. I know that my struggling with it could be nothing more than the exacerbation just slowly taking hold, but I can’t be sure. The one thing that I don’t want to find is myself wallowing under a pile of things that feel like they are about to bury me. This last week I stripped everything down to a minimum, enough to let people out there know that I was still alive, but little enough not to tax myself too much. My intention is to step things back up slowly and to allow within it how I feel each day, rather than the rigid this is what I have to do everyday. I know that it is the only way I have worked throughout my life, a constant rolling “To Do” list, but maybe it’s time to make it more a maybe list. It is one of the hardest things to get used to once your health is breaking down. None of us ever want to believe that we are doing too much, we are always capable of more. Having to let go of things, is hard. It doesn’t even change with the size of the task. I doesn’t matter whether it is stopping working or doing the housework or doing twenty minutes more on twitter, they all hurt. Every tiny step downwards is just that, a step that says, you are closer to death than you want to think about.

I realised a while ago that I had to change more than just what I was doing, there was a much bigger task, how I thought about things. How can anyone take two days to file their fingernails? Both hands on one day had somehow become too much and a task that if I look at it that way, just didn’t get done. Slowly those nails grew and grew until they were in danger of breaking, it was only when they did, that I did something about them. So incredibly silly as odd broken nails don’t make you feel good. I had to change how I saw that one task, I had to break it into pieces that let me cope with it and feel good about it, which isn’t that easy. I had to somehow accept that one hand on one day, the other the next, means I can achieve without feeling totally useless. Five nails filed over several hours, repeated for the second hand the next day. If I let myself think of it as pathetic, well that was just how I felt. By switching it around, achieving all the way, one nail at a time, I now have a task that doesn’t daunt me, scare me or even put me off doing it. I am not going to say that it is suddenly a total joy and I am proud of myself for getting it done, but “I” do it and that is the important bit. Even in the last week when Adam has never truly been far from me at any waking minute when my independence was possible, it was important.

Every time that I have gone through the process or reassessing and readjusting to my abilities, it is tough. The biggest thing I have learned from all of them is that feeling of independence and achievement have to be met, without them, it doesn’t work. I know without any doubt that these changes in my life are a long way from over. This first true exacerbation has shown me what my body has lain out for me in the future, it’s one of those hard things to get your head around that that wasn’t it, it’s going to happen and happen again. Life has taught me that when things happen again, they are inclined to also get worse, which in itself is scary. To survive them, I will need an even more flexible routine but still one that I can recognise as one. I never realised when I was diagnosed with any of my conditions, just how much of my future was going to be spent playing psychological games with myself. I am discovering more and more that those games are essential, how I see and feel about things is far more important than the pain or even the lack of oxygen. Anyone can take a tablet or hitch themselves up to an oxygen cylinder. Feeling bad about it, won’t have anything like the benefits that can be found when you can convince yourself it’s where you want not just need to be. I spend every day throwing tablets down my throat, I used to hate every single one of them. It isn’t just a case of getting used to taking them or the relief that they bring, there is now a positive feeling within me rather than the reluctance and even hatred that I felt for them at first. That one I take no credit for, it was something my brain did for me, but it is the same feeling that I can now reproduce for myself, in time, for all the hurdles jumped over or waiting to trip me up.

The most stupid thing I have ever had said to me by the majority of people is “You have to stay positive”. You can not make yourself be positive, if you don’t feel it, you can’t create it. Positive is a collection of things that come together, but we have to create all the elements ourselves. Control, achievement, independence and ability, are the major ones, with loads of tiny specks of others around them. Work on each element as its importance appears and that positive feeling about where you are in life does follow, it’s just a lot of work, but what else do I actually have left to do these days, other than make myself feel better.

Read my blog from 2 years ago today – 24/06/13 – Settled and happy again

I have to say that it has been an unexpected weekend, somehow all of this is bringing us closer, the opposite that I thought might happen as I know Adam and I are at other ends of the spectrum. Yet there is a feeling in each kiss and each word that says ‘I love you’ without the words being said, and when spoken the is a new depth that hasn’t been……

Busy, busy, busy

There are days when you just throw yourself into hell, because there is no other option. Two nights ago I woke totally soaked in sweat, it wasn’t just me but the entire bed that was so wet, that I honestly thought I could ring them out and see the water not just dripping but flowing. I have been on HRT for about 9 months now, so why it happened I have no idea as the house and bed weren’t particularly warm, reason or not the facts were there and all I could do was get up and try to find a way of fixing it. I haven’t had the strength to do a full bed change for a long time, it was actually one of the first things that Adam took over from me, so I decided to put a towel over the mattress and turn the duvet over so the upper part of the cover was over me. I lay in bed for about 15 minutes when I was aware that the towel was now wet and the duvet felt damp on my skin, my night was over. Like the majority of the world, I don’t have a spare duvet and mattress toppers, so the only thing that could be done was a marathon washing of everything on the bed. It actually had been a while since it had all been washed and my night time sweat was in many ways the final straw for me, just changing the sheets wasn’t going to be enough, it really all had to visit the washing machine. Adam kicked it off the next night by washing two of the toppers and I took over yesterday morning with Adams help, with the duvet, when he left the house for work I just had to add all the powders and so on to the machine and set it going, but yesterday was also shopping day.

Just after 11am it arrived and like every Christmas shop there appeared to be more in my hallway than two people could ever use, but I knew it was probably just about right. It took me a whole hour sat on my perching stool to sort through and remove all the excess packaging, repackage in cling film or plastic bags and store in our fridge freezer, in the process filling an entire bin with stuff no one needs. By the time it was done I felt as though I had been to the shops myself and carried it all home as well. The worst offenders where the fish and meat packaging, I don’t really eat much meat and Adam cooks for himself these days as I just can’t eat what he does and not at the time of day he likes to eat either. Christmas and New Year is the only when we eat the same and we eat the foods that I personally would love to eat daily, but we just can’t afford. Not many can afford to eat smoked salmon, pancetta, stuffed trout and so on, yes I have expensive tastes that only get fulfilled in these two weeks of any year. If I am being totally honest it isn’t just the cost, I find meat and so on really difficult to swallow and what they do to my insides, well isn’t worth thinking about. Christmas though is just a few days, days when I say to hell with what my health want’s and hello to all the flavours, texture, colours and smells that set my taste buds alight. Adam prefers the simpler foods, but also enjoys the treats that Christmas bring when they appear in front of him, if I didn’t buy them, he would never even think about eating any of it. The washing machine had stopped just as the shopping arrived, but I didn’t want to shift machines until the fresh and frozen food was stowed, I didn’t think the heat of the tumble dryer would do them any good. Shifting the duvet took a huge effort, despite having given it an extra spin, then having to use my already dead arms to push it into the tumble dryer, left me just wanting to collapse on the floor and stay there. There wasn’t a muscle left that hadn’t died and given up, but it was done and I was at last free to came back through here elated by the fact I knew that all those treats were waiting and leaving the rest of the shopping for Adam to shift when he came home at lunchtime.

There was no covering up how I felt when he did arrive home and he clearly wasn’t impressed that I had pushed myself that hard, but he knew what my answer would be so he said little and just set to shifting the coke bottles and so on to clear the hallway and to put his mind at rest. Regardless of weather he always comes home on shopping day as he has this idea fixed in his head that I will trip over it if he doesn’t shift it first. It doesn’t matter how many times I try to tell him that if I am going to fall, I will fall and it has nothing to do with falling over things. I may not have the greatest memory or eyesight, but I have never fallen over any shopping ever, but he says that he just wouldn’t know what to say to my daughter Teressa if I fell and broke my hip, just because he didn’t come home and make sure the floor was clear or obstetrical, it’s really hard not to love him. I couldn’t cover up being tired, I was beyond that point, but I managed to convince him that I would come round again, all I needed was a rest and a chance for my body to catch up with the world again. But I could as always cover up to a huge degree the pain that had by then started to break through, before he went back to work we together pulled the duvet out, shook it, changed ends and stuffed it back into the machine as one session clearly wasn’t going to be enough. I wasn’t aware of it at the time, but realised later that I had been a little snappy with him when he didn’t click as to the fact I wanted it back in the machine, well what else would I do with a wet duvet, all to often recently there is something that gives me away when I try to pull the wool over his eyes. It took another two runs and as soon as it was done, I started the washing machine again, with the final mattress topper. We have an old fashion pulley on the kitchen ceiling, so I lowered it and spread the duvet over the poles so it could air and the final slight dampness could vanish, yanking the ropes to lift it back to roof level was a real killer and the final straw, I went straight to bed, as I climbed into the odd selection of items I had put together to substitute for bedding I took my second booster pill of the day.

I had been asleep for an hour when the door bell rang, it was a parcel for me from Boots, again. Ironically the parcel was my order of my sleep mask and ear plugs and despite aching from head to toe and wishing I had had another half hours sleep at least, I couldn’t help but have a little laugh to myself. I had pushed myself to the limit yesterday, for a fit person it would have been water off a ducks back, for me it was as though I had stuffed a weeks worth of activity into 7 hours and my body was letting me know what it thought of me. I was so glad that Adam would be home soon and could take over the rest of the work needed to finish off the washing and then to remake the bed, if he hadn’t been, I would have spent last night just as I had my afternoon nap, on but not in a bed. There is nothing on this planet like climbing into a bed where every element of it has been washed and is plumped up and so soft that it feels like lying in a cloud, despite that I new how my body was feeling and I was so tired that I couldn’t bare the idea of being woken by anything, so booster 3 was swallowed and I gave my earplugs and sleep mask their first experimental use.

I woke with the alarm, the earplugs and mask had worked almost perfectly. I did wake for a few seconds before the alarm sounded and had pulled the mask off to check the time, before slipping back into sleep for another 15 minutes. The world may sound muffled and distant when you stuff little cylinders of foam into your ears, but when it comes to sleep, well they are the magic pill. As for the mask, well I managed without issue to sleep with it on, but I think it might be more a day time accessory, at least in the winter, I have had blackout curtains for years, but there is always a strip of light that bounces of the bay ceiling when it is a sunny day, or even dawn, but I would recommend them to anyone, odd looking or not, sleep is important.

This morning, well yes I still ache everywhere and I have a sleepiness that is actually on the pleasant side, tiredness isn’t always draining and deadly, tiredness left from a good night sleep is actually almost nice, as it’s warm and cocooning not flattening and oppressive. I know I did far far too much yesterday and that I will probably physically pay for it for a couple of days, but sometimes we don’t have a choice, the only door open is the one marked hell.

 

Please read my blog from 2 years ago today – 24/12/12 – Christmas eve 

At this point in the year from the first Christmas I remember I would have been over bubbling with excitement, I never quite grew out of that. You have probably noticed that sentence is written in the past tense, I no longer somehow feel that way, another casualty of my health. Christmas was a magic filled…….