Just as I expected, yesterday afternoon went badly, as did the rest of the day. If you thought my description yesterday of the ills of having a shower was possibly an exaggeration, without going into more detail, I will simply say that the reality was far worse. By the evening, I was totally unable to find peace of any kind. Between the pains that were around my body, all fully expected, and the spasms in my guts that made just sitting in any position that I could find, almost impossible, I was in a world beyond any normal pain. It is rare for me to have both sets of pain working against each other, and I hope that it remains just so. I also had to take a double dose of my metoclopramide to eventually knock the constant swells of sickness on the head. It’s best to say, that I was not a happy chappy, in any regards what so ever. I even on a couple of occasions, allowed Adam to push me around the house in my wheelchair, as it was an action a step too far for my muscles to tolerate. The greatest joy I had yesterday afternoon, wasn’t the unsticking of my hair from my head, but it was climbing into bed and finally drifting off into a much-needed sleep.
We all get bad days, and the only thing we can do is go with them. There is no way of fighting what happened to me yesterday or avoiding it. Life sometimes just takes over and you quite simply have to go with it and hope, that that set of events, don’t align themselves ever again. In this case, the odds are on my side, especially as I wouldn’t normally take a shower if my stomach is playing up, but I know without a seconds thought, there will be similar events ahead of me, just with different sources. We all grab hold of our good days, we celebrate them and we make them our memories. But trying to ignore the bad ones, is madness. All any of us can do is go with them, work our way through them, knowing that we can expect the next one to appear in the not to distant future, but praying it isn’t tomorrow. 10 years ago, I wouldn’t have even been able to imagine the things that my body does to me now. I would even go as far as to say, that what I now see as an OK day, would back them have been branded as hellish. That’s the problem with progression, our perspective on life progresses just as everything else does.
I don’t hide any longer from what I know is my truth. I use to, I used to pretend that having PRMS wasn’t going to change my life, nor were any of my other conditions. I carried on working as though nothing could touch me. I worked myself into the ground day after day, after day. I felt just like I did when I became a DJ. These days, a female DJ isn’t anything unusual. I was the only female DJ in Scotland. No, I’m not talking about on the radio, although I did turn my hand to that and didn’t like it. I am talking about the DJ’s you saw everywhere in the 90’s, in all the top city center bars and nightclubs. I worked 7 nights a week, often more than one gig per night, I had to be not just as good, but better than the guy’s as everyone, expected me to fail. I didn’t and I made a full-time job out of it, as I was on my own and I had to pay the bills. Becoming chronically ill, was just the same. I didn’t just have to be good at my job, because I was ill I had to be the best. I pushed myself into the ground and what for, to be finally made redundant. Medically, I could have given up work at least 5 years before I did, but I was so pigheaded, that I pushed and pushed and pushed. I was totally blind to what was ahead of me, I never once saw me being like those I saw in the hospital. I was stronger, better and abler. I was wrong. My perspective has been changed by my health.
I now know that I won’t have any great days. I now know, that there will be more bad days than good days ahead of me. I now know, just how ill I am and what my future is. It’s a level of acceptance that is way beyond accepting your health. No one would survive the first few years if we didn’t accept that we are ill, that we need to take medications and use aids. Accepting that you have reached a point where there is going to be more bad than good, is something else. If I’m honest, even being told that I had at most 10 years to live, didn’t make me see it. Somewhere in this crazy head of mine, I still saw this stylised view of carrying on as I was until the very final stages. I saw myself going on as I was, then suddenly in the last few months, things would get bad, I see now, it’s just not that way. Life just doesn’t work that way.
I don’t know exactly when I woke up to this new truth. It wasn’t like when I accepted my health, that was a clean line. I didn’t, then I did. This has been gradual, it built up, bit by bit over the last few months. In the last few weeks, I have almost felt myself waking up to the truth. In those weeks, I’ve searched for the good days, the ones I almost don’t really remember having. There weren’t any. My best days, are now what 10 years ago I would have said were horrendous and almost unbearable, which says almost everything. You could say that the good has gone, but that’s where perspective comes in. I now have to forget the “good old days”, they are gone and I have to let my new perspective fully move in. Life isn’t going to be the way I imagined, it’s going to be reality. My health is failing and I have had to accept that, otherwise, I know without a doubt, that I will slip into depression. That’s where it starts, having our dreams destroyed. So I’ve said it, I’m into that phase I didn’t want to believe existed, the one that starts with changing what I see as the bad, into the good.
Please read my blog from 2 years ago today – 01/05/2014 – A trick of the mind
Recently I have been posting pictures of wonderful landscapes and sights on twitter and Facebook, the kind of places that all too often just seem to have stepped out of our imaginations and are suddenly there in front of us. Some I have selected as I just knew they would be the sights others would enjoy but most are sights I enjoy, places I wish had been here in Scotland so that I could have seen them, places that all seem to have a moody and mystic feel to them, the places that somehow I see myself in. Travel has always been something I just wasn’t interested in, after several horrid childhood holidays abroad, where all I wanted was to go home, I have never left the UK again. My first marriage found me living all over the country, but it wasn’t until we moved to Rhu that I started to feel as though I was in a place that felt like home, maybe that had something to do with me finding the strength to walk…..
Constant debilitating pain is self destroying of peace within oneself of mind and body if we let it rule. How do we overcome these powerful and fearful emotions daily, I think from past experience you have hit on the answer which is to ride and go with them, accepting what is and try to meditate on good things. Acceptance is such a big word, but, you are doing this Pamela and this is another day done. Huge task I know but please keep writing your daily blog as you are defusing some of the angst and pain by writing your feelings down and helping so many people to cope with their illness. I feel for you and all other followers of this blog who are suffering, I am now an old lady and in pretty good health of which I am very grateful but I have much sympathy for those not so fortunate as me. Much love to all and to you Pamela especially as you have brought this group together. HUGS!))))))))))
Thank you Pauline for your kind words. It can be incredibly hard some days just to get up, but I believe we have no other choice but to keep assessing our own health and working with it. I’ve reached a point where my acceptance has had to change, staying still would only bring me down. I just hope others find the strength to do the same, as I truly believe that if we are to avoid depression, it is a step we have to take.
I hope your good health will continue and you remain one of the lucky ones.
Take care (((Hugs)))
I appreciate your posts. I have Fibromyalgia and they suspect possibly MS as well. I read your post about taking a shower and you described, very much, how that can often be for me. Sometimes I look at my shower and have a ‘battle in my head’ about whether to take a shower, have a bath, have a wash or do nothing. It is hard to accept that life has imposed limits. It is hard and even shocking to find oneself changed. We get to be a different version of ourselves, than we ever expected. Keep going. You can do it.
I once thought that accepting my illness was all I had to do. I guess we are all naive to start with, but acceptance never stops having to be done. Every change to our health has to be worked through and we have to find the peace of mind to continue.
I have learned that my body knows better than me, if like you I am faced with a mental battle over what to do next, I actually know the answer and don’t need to fight. If you were up to it, you would step into the shower without a seconds thought. I don’t fight my body, I do what it wants, as pushing it always means I am worse off. There is no point making life more difficult than it is already.
Take care (((Hugs)))
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I’VE NOT ACCEPTED IT YET. FOR ME, TAKING A SHOWER IS AN ALL DAY ORDEAL. SADLY, I UNDERSTAND.