There seem to be so many things that come with PRMS and Fibro that seem perfectly designed to drive us straight up the nearest wall. For example, I woke this morning to discover, that once again my “nappy” was wet. It’s not the best start to my day, it wouldn’t be for most people over the age of 3, but for me, it has another implication, one that says today is going to be a wet day. Not surprisingly, that never fills me with joy. It’s four months now since I first woke up wet, and the NHS supplied me with a mountain of pads. Yes, I have accepted that this is now part of my life, but I’m not sure that I will ever get used to it. Back then in those first days when it all started, I thought that that was my life, that every day from that moment on, I was going to be constantly wet. I was wrong. I can actually go for several days, with nothing more than a few drips, but if I wet myself over night, well, it fails almost every time I need to go, that day and often for several more. Like everything else in this mad life of mine, there is no rhyme nor reason, but oddly, I have noticed one thing that doesn’t make a lot of sense. I never start wetting myself, when I am sitting. It only happens if I am standing or lying down, but once started, it doesn’t matter what I do, it keeps going until it’s happy to stop.
Throughout my life, there has been one thing that I have held onto tightly, and used at every turn, logic. Everything had to be logical, or it quite simply drove me nuts, that was, until I managed to understand it. If there was someone sitting out there, wanting to find the perfect way of bringing insanity into my life, well they found it. Not one symptom of either of those conditions, can you apply logic to. To me, the most natural way for my body to think it was OK to open my bladder, would be when I am sitting down, yet it chooses to do so in the two positions, that make no sense at all. Just another symptom, that there is no logic to in any way shape or form. Every single day of my life, my body does something that is totally illogical, on every level but one, it’s MS. Quite honestly, I am more than fed up with everything that is wrong with me, being put down to MS. In some ways, it’s more annoying, than when I didn’t know what was wrong with me, because back then, I at least had hope that one day, someone would be able to fix me. There is no logic to MS, no one understands it, so why do I still think that I should? So here I am, stuck with it, incurable, illogical, and totally annoying in every way that I can think of. OK, I’m having a rant, I don’t do it that often, but if I didn’t, well I really would be too good to be true.
I guess all of us struggle, no matter how well informed or how long we have lived this way with certain aspects of our health. In fact, the mental battle is without a doubt the biggest battle of all. No matter how long ago it was that you made your peace and accepted your life as it is, there are always going to be those things that niggle away at you. Acceptance isn’t a one step journey, you go through it again and again, taking it one step further, but you never complete it, because as long as your health keeps progressing, you are going to have to keep accepting. Right now, I believe I am totally at peace with the fact that my life is slipping towards its end. I’m even at peace with the fact that the doctors believe, that I will die from respiratory arrest. Yet something so tiny in comparison, like wetting myself, can send me into a rant. I will never totally complete that journey, until moments before I complete my life. That is, unless, I do what I normally do, have a somewhat delayed reaction. Well, I really should have had that rant four months ago, but it didn’t happen them, it waited until now.
Just as we don’t know what our bodies will do to us next, we never really know how we will react to it, until it happens. It doesn’t matter how many times we have read those symptom lists, or how many other people we know, who are further down the line until something happens to us personally, we have no idea, what our reaction will be. I remember years ago, about 2 or 3 post diagnosis, I had made my mind up that I could deal with anything other than incontinence. I did actually at the time, believe that that would be my signal, that it was time to end my life, but I’m still here. It really isn’t nearly as horrendous as I thought it would be, in fact, it’s actually really easy to handle. For some reason, though, back then, it sounded so disgusting, so degrading and so nasty, I couldn’t see how anyone could actually live with it. I don’t need to paint the pictures that I had in my head, I’m sure you can manage that one yourself, but the reality, is so different, that I actually felt nothing but relief at first. Maybe, that explains my belated rant, the relief has run out and reality is dawning. It’s just yet another annoying part of being ill.
Without a doubt, our opinions change as we grow into our health. No matter how annoying being ill can be, there is also a growing peace that comes with time. I doubt anyone can be angry forever. I for one, know that most of the time, I am now quite content with the way my life has played out, it wouldn’t have been my personal choice, but it’s not nearly as bad as I thought it might be. I might still get frustrated at the lack of logic in my life, but it’s honestly not a life that anyone out there couldn’t live. Maybe one day not too far in the future, I’ll wake without that feeling of dread, but a feeling of normality at the start of just another day, wet or dry.
Please read my blog from 2 years ago today – 26/09/2014 – A spot of luxury
I have just wasted about 5 minutes trying to understand one of those stupid text messages sent to my landline, why people think that automated messages are understandable I really don’t know. I still didn’t manage to write down the garbled website name they wanted me……
Having fibro myself i do understand what you are going through and found that the medication that i was on is what had been causing wetness for me. I wish you the best in future. take care 🙂
Thank you. I wish mine were that simple. It down to my MS, I also have huge problems with my bowels, so it was no surprise when bladder joined in. That still doesn’t make it any easier to handle, but I’m getting there. I hope you remain dry and don’t find yourself back here in the future.
Take care 😊
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“So here I am, stuck with it, incurable, illogical, and totally annoying in every way that I can think of.” Echoes my thoughts on narcolepsy. My assumption was “oh my sleep is messed up,” but when I realized how many things sleep has it’s grabby little hands in, it makes sense that it wasn’t *just* sleep that is affected. My difficulty is being in the grey area of severity – just bad enough to notice and attribute to a personal shortcoming, but not to the degree (and regularity) where you can be considered anything beyond difficult.
Obviously, our journeys are very different, but no less meaningful or real. I think everyone could use a sassy rant now and then, as they tend to contain both blunt honesty and some underlying humor (dark/morbid/satirical/whatever your flavor), and I appreciate that. 🙂
*note: hopefully it doesn’t come across as if I’m laughing at your circumstances – that would make me a really shitty human. Not my intent, but I know how easy miscommunication is on the big wide web and feel I should clarify just in case.
You didn’t in any way. I don’t know how much of my blog you have read, but I normally make a point of not mentioning the actual conditions that I have. I do that for a very good reason, I believe that they really don’t matter, we all share so much, regardless of the cause. Chronic illness messes with all our lives, and the issues it causes, touch almost all of us. A lot of the time, our journeys are amazingly similar, and without humour, of some sort, we’ed all land up wearing straight jackets. Nothing in our lives is *just* it all matters and it all messes with our lives.
Stay around and stay strong, you never know, we might be able to help each other with those grubby little hands 😏
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I really like that phrase “grow into our health”…it puts the situation into words perfectly! Wow. 🙂
Thank you 😊
So true! Great post.
“Throughout my life, there has been one thing that I have held onto tightly, and used at every turn, logic. Everything had to be logical, or it quite simply drove me nuts, that was, until I managed to understand it. If there was someone sitting out there, wanting to find the perfect way of bringing insanity into my life, well they found it.”
Yes, yes, yes!! I am laughing so hard right now, not at you, but at oh my god how much that resonates. I love logic and order, and the illogical of my body and illness drives me around the bend sometimes. Sometimes I swear I can hear the universe chuckling, “Oh yea, she thought all was going peachy keen? That she had this round all figured out? Oh, well, let’s see what we can come up with next, shall we? Need to get that idea of order, control, logic right out of this one’s mind” Thanks for writing this post too today! I do so appreciate your blog and words.
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Happy to help 😊
I keep trying to “accept” having fibro, think I have and then right back to the anger part. I want that peace finally…somewhat.
Thank you for writing so honestly and beautifully.
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You will get there, but as I said, it’s never one act, it takes time and builds. Even once you do get there, your still going to have the odd day here and there where your angry because of something that’s happening. Like when my daughter married and I couldn’t be there, I was angry as hell, but it settled down quickly and the peace returned. Have faith in yourself, and you will settle into this life and find contentment and acceptance.
Take care 💞
Hi again. Some empathy and understanding here. When I cannot hold my bladder it ain’t no drip it’s a bucket (as I say). I did do this stood up for a while then just stopped (neurologist physiology said this untrue, district nurse said yes we understand what happens with MS , I m confused at confliction of professionals). Any way you confirm I was not mad with what was happening too me. Night time oddly I m fine. This is how important your blog’s are to refers and hopefully some ill informed professional.
Thanks again for sharing intimate parts of MS and the like . I know this blog is important to you too and your braveness hopefully will pass on to readers. living in a limited world blog is truly a must read. X x x thanks again.
Physiotherapist I meant to say
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Physiotherapist I meant to say. I make lots of mistakes but I m sure you get the gist😀
I make many every single sentence, thank god for spell checker. I more than understand 😊
Thank you, my blog is very important to me, and I know that are many who read again and again. I have always said there is only one thing to write about and that is the truth, because the truth matters. I’m glad you find my truth helpful.
Stay strong 💞