I never stop learning

On Sunday, I struggled through what I hope was my last shower alone. It was actually a really odd shower, as I spent the whole thing looking for those points where realistically I need help. To my surprise, there were far more points of struggle, and even danger, than I had ever noticed before.

When you are just doing things, because they have to be done, you just do them regardless of their difficulty. From start to finish, it was pretty much a disaster, and one filled with so many danger points, that I began to wonder how I have been managing at all. My simple analysis from start to end proved what I already knew, the shower head spends more time on the floor than it does, actually pouring water over me. When we had the shower installed, I made a huge mistake of putting the fold-down seat directly below the shower pole. The result is that I have water pouring onto my head, somewhere that I don’t only find painful, but as anyone who cares for their hair will tell you, just removes shampoo and conditioner as soon as you put them on, not much use at all. For a long time, I have been thinking about adding another pole to the adjacent wall at a lower level, I could then control the flow and most importantly the direction, with much more care. I also think that it won’t just help me, but will help the carer who is coming to help me.

When it comes to washing my body, I have found that there are more parts of me, that I couldn’t really reach than I expected. I knew that the only way that most of my back has been washed for a long time, is while I am actually washing my hair, and during my final rinse, in other words, not at all. I have only been able to manage a cursory stab at my feet, and even parts of my legs don’t do much better. I have relied on the extra length that my razor offers to not just remove the hair, but hopefully the dirt as well.

Since my legs went just over six months ago, I can only say that luck must have been on my side. Getting dry, is nothing else other than an accident zone, waiting to happen. Without help, I have been up and down like a yo-yo, collecting towels, sitting, twisting and trying to dry myself just a little, before having to stand up again. The grab rails we installed several months ago have made it easier, but drying yourself one handed with a large heavy bath sheet, is ni on impossible. A combination of air drying, and sitting with the towel wrapped around me in my wheelchair when I can no longer reach anymore, or my legs don’t want to play this silly game any longer, has had to suffice. I have been accepting Adams help when it came to my feet, as my system had resulted in the skin scaling between my toes and in fact, all around the rest of my feet. He has achieved a huge improvement, but, is still scared of rubbing them quite as hard as they need to be.

Even once dry and dressed with Adams help, I still have to return to the bathroom to sort out those areas, where I have been using kitchen paper towel to ensure complete dryness. I have due to my cesarean scar, a large flap of skin that if it isn’t totally dry, rots. It’s not just there, but also under my breasts that have to be dry, before covering the skin with Savlon. You would think that knowing that has to be done, would be enough to ensure that I carried it out. but it isn’t. If I am not reminded, within 36 hours, they all begins to hurt and produce a someone unfriendly smell. The real problem is the loss of sensation, I don’t feel the pain and anyone else would, occasionally a mild stinging, but nothing more than that.

Having now only had a shower once a week, for the last few years, it has allowed Adam a whole week in which to wash my pajamas, socks, and dressing gown. Two weekly showers are going to put a huge strain on that system. For the first time in 5 years, I actually bought myself something new to wear, three new pairs of pajamas and a spare pair of trousers. All of which, apart from one of the tops, should be here today. Which means that this afternoon, I actually have to do some real work. Somehow, I need to clean out the draws in my bedroom, which have been holding a mixture of things I haven’t even seen in years. Years ago I offered not just to clean out the draws, but also my wardrobe, as nothing in either is of any use to me and Adam, really needs more storage. Over my years of immobility, I have ballooned from a size 8 to a size 22, virtually nothing I have is of any use to me. To date, he refuses to accept this offer as he sees it as my space, even when it’s space I don’t need. Yes, I need two of the four draws and some wardrobe space, but he can have most of it.

On the surface, asking someone to help you shower, sounds like nothing, but it is changing everything in ways that I never thought about. I have already had two sleepless nights about it. When they asked me “What time would you be ready for your shower in the morning?”, I was led by the word “morning”. The thing is, I don’t, I shower in the afternoon, between 3:00 and 3:30 usually, but being led, made me answer 9:30am. To do that, would cause me a total shack up of my routine and it was distressing me in ways that just weren’t worth it, long before I even started. I tried for two days to do what would achieve their plan, not showering, just all it would take to be ready. I couldn’t make it work in my head, and for me, that is where it matters. One phone call from Adam fixed it as closely as they could, it will now be 4 pm, something I can handle.

The whole of that is just another example of what goes on in my head, and how if I am led, I can land up anywhere. Right now, my spoken word is a total mess, I’m not sure if it is the flare or the steroids, but when I talk, I can get no more than seven words out, before forgetting what I am saying, or what the next word should be. At it’s worst, it’s every couple of words. All morning I feel fine, other than my hands and legs, then the phone rings, and I try to talk and the truth appears in a way it can’t be hidden. By evening, it is far worse, but fatigue amplifies everything. I am in no doubt now that I am in a flare, but if the steroids are helping or not, I’m not totally sure. They are not a panacea, and have been used for years because they can make a change, nothing new has been found that works any better. Which is just another sign of how little work is really being done in the field of MS. With me having PRMS, the chances of them fixing everything, is extremely thin, my condition rarely does what other forms do, and most of the time, I am on my own. My hands are that bit better, I can at least feel all of my fingers, but using them is very hit and miss. My legs which were fine to begin with, joined in over the weekend, there has been no change there. Although they have been collapsing for months, they are now also telling me they are going to do it, which is off-putting whenever I stand, especially as it makes me move slower, increasing the danger. All I can do is hold on, and wait. That is a continuing story, waiting and more waiting, as there is nothing more anyone can do.


Please read my blog from 2 years ago today – 08/06/2014 – When and how

I remember quite clearly my Mother and even my Grandmother complaining that they didn’t understand the world any longer. I used to laugh inside because I always thought that they were referring to the changing technology, the gizmo’s and gadgets that we these days wouldn’t use as they would already be seen as old fashioned. Now I wonder if what they really were talking about, was something…..

16 thoughts on “I never stop learning

  1. I always read your posts and I hope that my comments bring you some sense of connection. I am thinking of you and am sorry you are having such difficulties. I find like you that as the day wears on, the fatigue makes things worse. I read a poem in my copy of The Sun magazine the other day later in the day, and totally didn’t get it or see why it was even published. It made no sense to me. I reread it this morning while eating my breakfast, and I actually was able to think about the hidden meanings. I knew right away that my prior thoughts were merely my Lyme brain playing horrible tricks on my comprehension. Thinking healing thoughts for you.

    Liked by 1 person

    • Unfortunately, you joined my blog just as things were falling apart. Please be reassured that my life isn’t always in such a terrible mess. It’s never a breeze, but neither is it a constant unstoppable struggle.

      I always appreiciate comments as they guide me, inspire me and keep me going. So thank you for taking the time firstly to read and secondly to send me words to think upon.

      Take care (((Hugs)))

      Liked by 1 person

  2. Thank you so much for sharing yourself in this blog. It means so much!
    I’m semi-retired clergy half the world away, and don’t have PRMS, but I have several chronic diseases myself and recognize so many of your trials:. Overwhelming fatigue, unexplained bruises, balance and falling, never knowing what body will serve up next. I realized, also, that I will probably die from something I assumed was just another bout of mystery pain. After I almost died a time or two from ignoring illnesses, my doc has convinced me to let her decide whether or not symptoms are important. It gets overwhelming, and I celebrate your endurance.
    (Oh, and I also have phone phobia….)


    • I have tired so hard to work out why I am the way I am now, as I always lived a healthy life, yet here I am. The more I tried to work it out, the more I realised that there was no reason and I had to use what I have. From a teenager on, I kept a diary, long gone thanks to those who claimed to love me, but I knew in my heart that I could write. The reason, or if you prefer, my purpose, is to share all the things no one tells us, all the things that are hidden, to show others, they are not alone.

      The name of our conditions don’t matter, we are ill, struggling with the same things, despite what our doctors tell us. I am glad you have found me, for you give me, one more purpose, one more person for whom I can write.

      Stay strong and take care (((Hugs)))


  3. Saying “Hello”. Oh all this getting help in is tiring in it is and that is never realised. That’s it sending a hug and a smile to you. X (((Hugs))) Gentle ones full of the smell of you favourite flower or purfume!

    Liked by 1 person

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