The first tiny steps

Adam told me the other evening, as he held onto me while we were having a hug before I went to bed, that he could both see and feel the change in me. He said that I was once again standing, rather than slumping into him with my leg muscles shaking. I don’t know why, but having someone outside your own body, confirming just how you feel, really matters. I already felt so much better, and he was right about that, but just his words, gave me, that little extra boost. It isn’t just getting rid of the dreaded drug, Duloxetine, I honestly feel so different since I stepped up my Gabapentin as well. I didn’t want to vocalise the change too soon, I wanted to be sure, to know that what I was saying here, was spot on, and not just a wishful dream. Well, I can declare, without a doubt, that my PRMS pain is lowered, not to the level of six months ago, but it is definitely lower. Plus, I am not sitting here feeling the muscles throughout my legs going into spasm every couple of minutes, those constant painless contraction, hold and releases, are now just minor events, rather than a staggeringly annoying issues. Even some of the sensations that have been driving me up the wall have also lessened. I can actually feel my body, not just a mass of numbness, pins and needles, shooting pains and anything else my nerves could create. Several minutes, even up to 15 or 20 are now commonplace, when I am me, not wondering yet again, if, I will find my left foot anytime soon. Just having those gaps of normality, feels great.

The calmness I found the other day, seems to have stayed with me. It is hard to feel anything other than stressed when you aren’t yourself. You can relax, lie down or sit quietly as much as you want, but, there is always, this core of stress that eats away at you, feeding the circle of events that fills and takes over your life. I know that there will always be an element of stress, as when you live in a body, that takes pure joy, in frustrating you, again and again, you can’t escape it. But for the last few days, over all of it, there has been this wonderful calmness. As with so many things, I can find several reasons for it, so pinpointing the one, isn’t possible. To be honest, I don’t even want to analyse it too closely, as somethings, should just be enjoyed. One thing, I do know, is that the Gabapentin has made me more sleepy, but in a good way, not the clawing fatigue that I so often feel. I am more than content to lie down during the day if I need to, and I am happy enough to go with that, if, that’s what my body wants. I know, that it goes against my plan for this year, but I can put up with the demands to sleep, as long as everything else feels better, which it does.

It is just another of the things you have to get used to with chronic illness, almost everything is a compromise and has to be part of your life balance. So if the price I have to pay, for less pain and not spending every minute locked in a battle with my body, I can live with it. The only thing I am finding a little difficult is, it’s playing with my concentration. I am finding myself just stopping and drifting off into thoughts that are miles away from what I am doing. One of the array of subjects I have been musing on has been put there by a subject that appeared thanks to one of my recent posts, the whole palliative care issue. I haven’t been able to stop thinking about finding out about and sorting through what will happen in my final weeks and after I am gone. My mind for some reason has decided that it wants to start at the end and then work backwards to where I am now. I guess that’s because, I actually know what I want, well part of it anyway.

When my son Jeffery died, because my ex-husband was in the Navy and we were constantly moving around, we decided, thanks to what I now know was misinformation, to bury him in my hometown. What we had wanted, was for him to be cremated, then his ashes interred in my family plot. As it was just the ashes of a baby, the costs would be low, and unlike a body, we would have been given permission to do so. Jeffery died in Edinburgh and we were told by the Funeral Directors that this wasn’t possible. Because he was a baby, there wouldn’t be any ashes left, he would simply disappear. I couldn’t take that, the idea that there would be nothing, well it didn’t sit right with me. I even begged them, that if it were just one tiny speck, I wanted it, but they insisted there was nothing. We took the step of buying a cemetery plot, which was expensive, and left us in debt, but my baby wasn’t going to vanish. Last year, it came to light that there are of course ashes from a baby, there had been a collaboration between the crematoria and Funeral Directors, which meant that infants were cremated with adults, to save cost. Millions of parents had been stripped of their children, by people wanting to make money, and millions of their ashes, are now mixed in with total strangers. For me, I know own a plot, and I promised my son, that one day, I would be with him. I know it was a promise made in another life, but it’s a promise I don’t want to break, but it would mean I would be hundreds of miles from Adam.

I have only been to a crematorium once, and I hated everything about it. Personally, I never want to go through that again, dead or alive. So, I have a plan now of what I want. I don’t want a funeral, no one sitting in a crematorium, listening to music they don’t like. No one watching a coffin vanishing to tears, no people standing around in the cold, not knowing what to say, or even think. The cremation part can be done without a coffin, just a shroud, as there will be no one to see it. Once Adam has my ashes, I want them split, so that I can keep my promise, there is no need of ceremony at that point either. Half of them are to be placed with Jeffery and my name added to his stone, all of which, can be carried out, without anyone having to travel. With the rest, well this is when those who want to, can gather as saying goodbye, I know that it is all part of the grieving process and important to those still alive, so I wouldn’t remove it totally, just change the location and time. I will leave it in Adams’ hands, as to where they go, as I trust him and I hope that one day, he will join me. Where ever it is, those who choose to say goodbye can do so then. Each if they want, can scatter some of my ashes and say what they want, or just stand silent and say a simple goodbye. So that bit is sorted in my mind, I just need to start emailing those who know, and can tell me the logistics, and cost, of carrying it all out. I am not a traditional person, so I don’t want a traditional end.

Understandably, I don’t want a funeral director running things and grabbing money at every turn. I’ve lived through that once, I don’t want anyone else to. I have also made my mind up about something else, I don’t want Adam to tell my birth family until it is all over. I will write two letters, only to be posted once it is all done. One for my youngest brother, the only one to have spoken to me in the last 5 years, it was also the first time for an even longer period. He called to tell me my father was dead, and to get me on his side, should there be a legal battle later, which there wasn’t. I’ve not heard from him since.  The second is for my mother if she’s still alive. They turned their backs on me years ago and I feel I own them nothing more than this, and as neither came to our wedding, I don’t see why I should even ask them to this. Those who care about me, and I care about, are the only ones who matter. I will also, have to sort out my will, the details of which, I wrote about a couple of years ago. This may not be much, but it is a start and we all have to start somewhere.


Please read my blog from 2 years ago today – 16/01/2014 – What day? Are you sure?

Today I would like two new legs and a new pelvic please! My request for new parts to my body or even an entire new one has remained unfulfilled now for many, many years, but I really would like today’s one…..








6 thoughts on “The first tiny steps

  1. I also deal with a chronic illness. It sucks I know. I have so much in meds that I take every morning that I can’t eat breakfast. Then I take them all again in the evening.

    Liked by 1 person

  2. I can tell you from personal experience that the sleepiness from the gabapentin does decrease the longer you are on it. You still feel relaxed, and may still need those naps, but it does get a bit better. With my chronic pain conditions and depression/bipolar, I take so many pills (a variety spread over 6 times a day), I feel like a walking pharmacy. But if I miss a dose of one, some or all I can tell, so I soldier on. Take care.

    Liked by 1 person

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