The day has arrived

We, at last, have a shower that works!!! I haven’t quite made my way into it yet, as that would push me out of routine, and even though I am desperate to feel clean, I know that would make the rest of my day hellish. Having a shower is so exhausting, no matter how I feel now, I know I will feel worse after. For a healthy person, a shower is just part of everyday life. To me, having a shower is something that has to be planned, worked out fully in advance and done at the right point in the day. That’s the hardest part, I have to be sure I have enough energy to do those oh so simple things, like holding my arms above my head, long enough, to wash my hair. Enough internal energy to deal with the heat that drains me at a rate that I quite honestly can’t explain, as until you have felt it happening, you can’t imagine it. For me, the best time is around 3 pm. By that point in the day, I have done almost everything that is to me essential. It is a point in the day, that if it all goes wrong, which it can do without warning, well I can just sit on the settee for the rest of the day, or even, go to bed for a rest.

When you break down all the elements from simply being sure I have all the towels, gels, shampoos required, then getting undressed and going to the loo, before entering the shower, that on its own, is more running around than I normally do, before going to bed. Washing is a painful process. Put together the physical actions, the reaching, the bending, the pain that those needles of water can create as they hit my skin, in just ten minutes, I want to do nothing other than escape, but I can’t. Not until I am clean, my legs are shaved and my hair is both clean and conditioned. Showers used to be five-minute wonders, not now. Now I am stuck sat there trying to recover before I am forced back into action. I don’t think I can be out of that shower in under 20 minutes. When I do appear early, well, the work is only half done. Have you ever felt as though your very breath is being dragged out of you? The heat and steam formed by the shower does just that, so yes, I have occasionally, just given up.

I have thought many times about accepting Adams offers of joining me in the shower to help me get washed. On the surface, it sounds like an answer, but it isn’t, at least not yet. I have worked so hard since my body fell apart, to keep myself covered so that he can’t see, what weight gain and muscle wastage has done to me. I know that he says that how I look, isn’t what’s important, but I can’t even bear seeing myself in the mirror, far less letting him see me. So to me, there is no other way of showering, other than alone.

When I do come out of the shower, the work hasn’t ended as I still somehow have to get dry, apply creams and all things we women do, just to make ourselves look as good as possible, more importantly, feel as good as possible. That’s what showering really used to be about. Few of us really need to shower daily, it’s not as though we all do manual labour and are bathed in sweat throughout the day. Showering and washing our hair daily, is about feeling good. I physically can’t take all that daily. It would destroy me so badly, I wouldn’t be able to do anything else. Even though I only shower weekly now, the whole pleasure of any individual part of it has long since gone. Showering is my weekly nightmare and that is no exaggeration.

Even now, when I haven’t had a shower for 12 days, and my hair is beyond disgusting, I am still not looking forwards to it. A couple of days ago, I thought that I would be diving in there the second the plumber was gone. Now the time has arrived, I am once more as I am every week, sitting here dreading all of it. These days, Adam does all the running around for me. He makes sure that as soon as I am undressed, everything is there where I can reach it and need it to be. He will have checked that the suction cap grab rails in the shower cabinet are secure and everything is safe. He will be there to tidy up after me, dry my feet and apply cream to them, he even helps me dress. All I have to do is wash. ALL, who am I trying to kid? Nothing in my life is just “ALL”. Have you ever had a cap full of needles battering their way into your skull? No, well that’s what I have to go through, just to wash my hair, as I said, nothing is just “ALL”.

I will sit here. I will extend everything that I can, in the secret hope that it will be too late in the day. It’s a game I play with myself every time. I push it until the last second, then Adams shuffling and chatter will tell me that I’m not getting away with it, I have to move and just get it over and done with. I just wish that someone would invent something that would take all of this away. I don’t know what? Just something, anything that would change my weekly nightmare into at least just something I’m not keen on, but I don’t know what.

 

Please read my blog from 2 years ago today – 30/04/2014 – Questions

Sometimes in life all we ever want are the answers, I often find when I feel like that that the best thing to do is not look for the answer, but to look for a new question. I suppose the best example of that is the oldest one I know, don’t “Ask why me? Ask why not me?”, the first is impossible to answer, but the second is the answer. Like everyone when I was first diagnosed, I asked myself the first question a million times and I actually found a million different answers, I could find more reasons than I wanted to admit as to why it should be me, I was pulling myself to bits because there wasn’t a real answer other than I was being punished. The three years before my diagnosis had been probably the happiest of my life, I had for the first time found someone……

It’s so good

I sometimes worry that what I write about here can appear to be a somewhat bleak picture of the realities of chronic illness, and to be fair on some levels it is impossible to not paint things in that light. None of us would put at the top of a list of things to achieve in life as being chronically ill and housebound, but it really isn’t all as bad as your or even my imagination can come up with. I know because people tell me that they are inspired by what I write, so clearly I am achieving some sort of balance, but it is incredibly hard to sit here and set out to write a post about all the great things in my daily life, well think about it, who could. Life isn’t like that for anyone, and if they tried to convince you otherwise, you wouldn’t believe them at all, or worse still you would put them down as a fruit cake. Daily life for me is not really that different than it is for everyone else on this planet, and as boring as that is, few of us are in a hurry for it to end, I am no different, I just have extra things to deal with on top of just living. It is your values on daily life that change, for you to have a good day it would probably include work going well, the children not fighting or going out for a lovely meal, as it is those small things that change ordinary into great. For me it is just the same small things, basic things just like you, change my day from just a day into a great day, and just like you they can also change it into a really bad day. Regardless of what my health has achieved, I am still just a person and one that reacts to life just as everyone else does.

Yesterday I had my weekly fight to get my hair washed, not a biggie just not something I really enjoy, but I managed to turn it into a trial that is still causing me pain and problems. I forgot to bring with me into the bathroom the dark blue towel I use for my hair as it is dyed dark purple. I wasn’t dyeing my hair yesterday but I have found over the years that it doesn’t seem to matter how often you have washed your hair, there is all to often even weeks later some lose colour that leaches in to the towel, my bathroom towels are cream. Standing in the shower cubical, dripping wet and without my towel, I had a choice, chance it or create a wet trail to the kitchen and back to get the one I needed. I took a chance, and I lost! Once dressed I was left with a cream towel which had some pale pink lines on it and I knew I had to wash it there and then or it would stain. I tried to wash it by hand as I would have done years ago, but it just showed me how useless my hands had become, I couldn’t do it, the weight of a wet hand towel was too much for me. I did what I could to get the water out of it and threw it into the washing machine and went to find other white washing to go into the machine with it. I set the machine up and left it to do it’s job.

I know that doesn’t sound like much but that is the first time I have done any washing for years. I sat here playing a game feeling rather chuffed with myself, I had carried, OK in a couple of trips a large pile of washing from the basket to the kitchen, I had dealt with it all against the odds that it would be too much. You wouldn’t believe how something that small can lift your spirits and make it a good day, but that maybe was my mistake, I ticked the good box too soon. This is where my life becomes different from yours, I don’t get to have the good for long, within about half an hour the pain started in my arms, shoulders and neck. With my hair still being wet I had stood up to brush it through again and as I lifted my arm the pain screamed through me. When I went to bed last night it was as thought someone had cut my body off below my bust, as the pain in my upper body was over shadowing everything else. Here I am now 24hrs later and I am still paying for my few minutes of achievement, the upper body section is still painful and every movement reminds me. So how do I see yesterday now, I still see it as a good day, I was faced with a problem, one that I had to deal with and I knew that my body wasn’t really capable of, but I did it. Being proud of having a shower and doing some washing may sound stupid to you, and it would have done to me years ago as well, but it was a major effort with a big price to pay and to someone who’s body normally just sits or sleeps, it is the equivalent of running a marathon.

I suppose the point is that all may to some sound a bleak way to live, but to others who like me live this life, I expect they too like me will smile knowing just how important and how good it feels to achieve a huge nothing.

Facing painful facts

Being exhausted is a state of the now ‘normal’, one that you can’t escape or find a way to cure, it just is. There are so many things in my and all others with progressive illnesses lives that become so much part of our lives that we don’t really think about them any longer. Just as you expect to get up and wash and dress and be out of your house on the way to work in under an hour, I expect to get up put on my dressing gown and sit at my computer, never feeling that I could make the journey to the bottom of the stairs far less all the way into the city, that is now normal.

Yesterday when I took a shower and washed my hair, nothing much for most people, but the whole process of getting undressed from my pajamas and dressing gown, sitting in the shower washing myself including my hair, found me having to just sit there with the water keeping me warm for several minutes, as I was simply to exhausted to get out and dry myself. Adam has often offered to help me but somehow I think that for now would be harder for me to deal with. Facing that point when I have to start thinking about taking help is odd, I’m not there yet, but when I was sat there waiting to feel ready to simply dry myself made me realise that it may not be the too distant future before some help may be needed. That is a big step and as an adult not the kind of thing that you ever think you will need any help with ever. We all take it for granted that our lives will continue upwards from the point we can truly call ourselves adult. When we leave the family nest and take the responsibility for ourselves we just don’t see anything else ahead other than an upwards slope, better jobs, better wages, bigger homes, nicer clothes and new relationships. Then suddenly all that is reversed! Doing things that we learned to do as a child and finding like a child we actually need help and to relearn or find a different ways of doing things to achieve the same result is tough.

Progressions are tough, if I were to spend the rest of my life as I am now, well that wouldn’t be too bad, but to not know or have the slightest idea what or how it will happen, isn’t always easy. I know that my muscles are not what they were, that they won’t do the things I want them to and even at times something as simple as typing forces me to take rests, as they just can’t manage the next letter. My entire body is slowly loosing it’s strength, but for now I still manage without assistance, but the progression is showing me that the next step is getting closer every day, I just wish I knew when that step will arrive. How would you manage your life if suddenly on Monday morning you went for your shower and instead of the normal 10 minutes start to finish, you were still there in the shower after 20 minutes, unsure how you will dry yourself. It is a simple thing in life that may give you a glimpse in to what it is like, slowly every simple thing is becoming a slower and longer process, one day it will be so slow that I have no choice other than to accept the help on offer, how easy would that acceptance be for you?

Fixing the gaps

Last night I actually remembered to ask Adam to sort me out a couple of cards to send to my Mother and brother, he had already done it. He realised that I have forgot all about it so when he was sorting out his cards for his family he added them onto his list. Clearly he has noticed that my brain just isn’t here or up to dealing with very much at the minute and had stepped in. He laughed with me when I told him the muddle I had got myself in to when it came to the shopping for Christmas simply because I am just not making sense of dates, although yesterday was the 20th I really wasn’t getting the fact that Christmas day was just 5 days away, I get it now though, just 4 days left. There was one other odd thing that I simply forgot to add in yesterday, and that was I suppose the silliest of the oddities. On Tuesday the shopping had arrived and as always some of it had to stay in the hall as it was to heavy for me to put away, so Adam does it in the evening. Our hall is really dark and I don’t use the light as I am just walking through, but right up until yesterday afternoon every time I stepped into the hall I stopped, trying to remember where the long gone shopping was so that I didn’t fall over. A little more proof that my mind is in a world all of it’s own. What I did notice though was just like the date thing, once I deliberately stopped myself and put some concentrated thought into correcting the error, from that point on I have been find. It is almost like I have to reconnect the broken ends of the link and once fixed properly I have managed to move forward, were if I shake my head and dismiss my stupidity, it just keeps doing it. Life is going to move very slowly if this is a glimpse of what’s next. The brain is such a complex thing and without the knowledge of medical teaching I am groping around in the dark. It would be amazing to have a psychologist read all this and tell me if I am getting it right or making it worse.

I have just been to have my shower and as always I am now exhausted, my whole body feels as thought once again I have put it through a marathon plus and assault course. Something as simple as getting washed and washing my hair is a simple nightmare from start to finish, just getting undressed is bad enough, everything else, well lets not go there. Adam keeps going on at me to do it when he is at home, so that he can help where needed and of course because he is convinced that I am going to have an accident. I do see his point but mine is about far more. The big one is about timing, I have long hair that goes frizzy if I use a hairdrier, so I have to let it dry by itself, this means I have to shower in the morning so that my hair is dry by the time I need to sleep in the afternoon. Washing my hair is also the bit that I hate most, now he couldn’t help much with it, yes holding my arms above my head is tiring but the worst thing is the water on my head. I have tried different temperatures and altered the strength of the flow but nothing seems to make a difference, I get this sharp pains from the top of my head down into my ear and jaw. They are like small lightning bolts, agonizingly sharp . The whole process causes extreme fatigue and pains and help isn’t the answer, and I have no answers or possibilities to get round something that has to be done.

It’s days like this were I look over the past few days and laugh at the mad thoughts I still have of having a job. I don’t know who I am trying to kid with that thought, as I wouldn’t last 10 minutes. In my own little world I am fine and I have all the abilities that I had in the past, but I do still know what reality is and reality tells me it is all just a dream.

Control of me

I took sometime yesterday to sit and think through what happens now, it is clear that somethings have to change as I really am getting worse and worse when it comes to all the cognitive issues. I haven’t spoken to Adam about this yet and I know he will read this tonight but I am hoping to find the spot to talk this evening when he comes home. Why I didn’t sit and talk to him last night, I don’t know, that in itself is an example of what is wrong, I could have talked I just didn’t do it. I am just not doing things that I know I have to. It is almost as thought I am not doing anything other than sitting here on my PC, not because I don’t want to. or I don’t know I need to do things, but they just don’t happen. Take phoning to book an ambulance to take me to the hospital, I just stopped right now and did it, I have had 2 months in which to make that booking and although I wrote about it yesterday and I spoke to Adam about it, I didn’t actually do it.

I used to be so totally organised in life, everything was planned and ready long before it was needed so to me this is completely alien, the phone call is just an example and I have to say probably a bad one. I am going to take a deep breath now and make a painful admission, I am also avoiding all the daily things. I often now don’t shower for a couple of days or so, partly because it is an exhausting proses and partly as I have done nothing to get me into a condition that needs showering, so I just don’t do it, not the worst thing I know, but the next bit is. A few weeks ago I could smell something and I couldn’t work out what it was, I couldn’t find anything at first, it took me two days of checking and fixing different things with no real result, then I found it. When I had been showering I hadn’t dried myself properly, there is a fold of skin that was caused when I had my hysterectomy. Ever since it was formed I have had to care for it and I haven’t been. What I was smelling was my own rotting skin, it was raw and weeping. I had felt nothing and if I hadn’t smelt it, well I could have been in trouble, I actually don’t remember when I did last pay it the attention that I know it needs, even now I haven’t done anything since I was sure it was cleaned and healed, once again I have been ignoring it. I could probably sit here and go through a long list of the things I should do that I haven’t. I know Adam is well aware that I forget to eat and he checks all the time that I have, not that a few days without food would do me any harm, but short of him sitting with a check list and going through it with me each day, I don’t see how to get control of all of this.

I don’t want to be treated as a child, but I for the life of me I don’t know how to get round this muddle that is appearing. On the surface anyone would be forgiven for thinking that I am coping doing all my daily tasks, the truth is that in the main, my way of coping is to simply not do it, and then totally forget about it, job done. This was all part of what happened a the other night when I screamed in my head “I am still here” I am not just loosing the things I wrote about the other day, I am also loosing the ability to look after myself when and how I should. This is in some ways harder to admit because I find it repulsive that I could have let my personal care fall so far, that my skin was rotting with no real reason behind it. One thing I do know is that it isn’t laziness, it is just the same as loosing concentration in what I am doing, I just forget to do any of it, distracted by everything and nothing. None of this is me and I can’t without giving up all control see away of sorting it. When your mind has slipped so far that it is content to be the total opposite of what it has always been, how do you fix it. I know what is wrong, I can say I will get it all fixed right now and by tonight I will still have done nothing and be totally unfazed by it all. I have lost control.

I can’t explain in any other way why all this has happened, other than to say I forget, but that doesn’t really describe it at all. If you forget you put it right when you remember, but I might not remember for days because life and exhaustion is my distraction. This is why I need to talk to Adam tonight, I need to work out with him away of getting even these simple things sorted before something I “forget” actually does me some real harm. This isn’t going to be easy.