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……

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.