At this very moment, I pondering on what has to be one of the biggest questions everyone has about their bodies when they have MS. No, not what caused it, but the one that has us questioning, often out loud, “where did that damned bruises come from”. I have had them appearing all over my body for years, mainly on my legs, but other places as well. This morning, I was sorting out my nebulizer when I spotted what I was initially sure was just a dirty mark on the inside of my wrist. When I looked closer, I saw straight away it wasn’t dirt at all, it was another bruise, actually, it was a rather large and dark bruise, that once again I have no idea how it happened.
I know bruises don’t really matter that much, but I honestly used to have so many on my legs at times, that I wore those 90 Denier black tights, not just because I liked them, but they hid them perfectly. I realised just like all of us, that it had to do with the ridiculous number of times that we walked into tables, desks and so on, it didn’t exactly take a genius to work that one out. At first, I just thought that I was somewhat clumsy and tried hard to put to one side, there were those odd ones that had an overriding question attached as I had no memory of walking into anything. My balance had been screwy for so many years, that it became a bit of a joke really, but inside I was worried about the missing memory. I even went to my doctor at one point because there were so many of them, I was worried I had a problem of veins collapsing or a some kind of blood disorder. It was, of course, another one of the things that my doctors just brushed off and sent me home feeling stupid. My eventual diagnosis of MS, made sense of it, I wasn’t forgetting, it was the fact that I wasn’t feeling, so there was nothing to remember.
I have to say that it has been quite a while now since I had a mystery bruise. Well, it’s been years since I walked anywhere other than in the house and in the last six months, not even there. I actually dared to think that my days of going “there’s another one” had ended, but clearly this morning proves that isn’t true. I know all to well that my sensations are screwed up, but I have to admit there is something just that bit scary about knowing you can hit yourself off something that hard, that it leaves a deep purple bruise, with no sensation what so ever, is scary. Even today, when I press on it, I can feel nothing, it isn’t tender or painful in any way. It has always left me wondering how badly I could actually injure myself and actually feel nothing? Even odder than that is the fact, that this is the same body that produces so much pain, that I frequently have to reach for my morphine boosters, just to be able to cope with it. I know, it’s just the mixed up nightmare that is MS, but I can’t help wondering, just what are our bodies really capable of?
If my doctors are right, I have had PRMS now for 34 years. There is no comparison between then and now, and in the past 15 years it has speeded it way to where I am today. I am no different from anyone else who is chronically ill, in the fact that I wish with all my heart, that I knew what will happen next, and how I will be just before it all ends. All though MS is horribly unpredictable, it’s not quite the same story with PRMS, there is one certainty that I live with and that is I will get worse, slowly, bit by bit, through every day that I live. If I am unlucky, it could all happen very suddenly, or be a mix of both, but I will get worse. I guess that’s why, the question that keeps running around in my head recently, is just what is the human body capable of? I can find loads of information on the symptoms of MS, but not one of those has answered my question of how bad can those symptoms be? It is almost as though there is this golden rule, that says don’t talk about it.
Even though I have met a couple of people many years ago, who I hope for their sakes, weren’t that far from the end, but seeing them, didn’t help me with what I wanted to know now. I couldn’t see how they felt inside those crippled bodies. I didn’t ask, but if I had, one of them at least, wouldn’t have been able to answer me. I have very mixed feelings about my future, and I guess like most of us, what I fear the most is the loss of mental ability, but very close behind it, is that question, how will it all feel? I don’t get the wall of silence, I don’t understand why no one wants to tell us and why they constantly hide behind that phrase, “no one knows as MS is unpredictable”. It may be unpredictable, but I’ve never asked for a day by day prediction, just the basics, the possible and the possibilities. Is that really asking the impossible? I don’t think so.
To this day, my COPD consultant is the only one who has said, that my PRMS is killing me and that it is highly likely, that my PRMS will stop me from breathing one day. Suffocation I can find information on, not pleasant, but we all have to go one way or another. So if my MS can cause spasms so tight they will crush my lungs or my airways, how tight can they crush other parts of me? How much pain can they cause? How badly can those mad sensations we all live with, become? Can pins and needles turn into swords and spikes? Or could my entire body become numb? If it does, will it bring that horrid pain that follows it everywhere? I just want to know.
Wow, it’s amazing what a bruise can do. I never knew all that was going to come out today, but it has, so maybe, it’s time that it did.
Please read my blog from 2 years ago today – 16/05/2014 – It’s more than just time
I was shocked last night when Adam came home and started for the third day in a row to tell me about a scheme he has signed up to at work, what shocked me was it now turns out that in the whole or the admin and records department of the hospital he works in, he is the only person to volunteer. A few days ago an email had gone out looking for people to mentor a young person who had never had a job since they left school, they had to have been unemployed for at least six months and all of it would be done during working hours. Adam decided that he would like to help and…..
This is exactly why I’m so thankful to have found your blog. It’s not too much to ask for some answers! The neurologists know, they have to, they’ve seen what other patients have gone through. But they clam up when asked. Don’t they understand this is a big problem with the depression we go through? I don’t know what could happen next! Just some guide lines! I’m not a hypochondriac but on the other side, I don’t know what to tell my doctors, I don’t want them to look at me and think that I am one and get a pat on the head and a smirk. Makes me just say, “I’m fine”, when I know I’m not.
They act like we’re children and we don’t need to know. The hell we don’t! We need to know what are bodies are doing now and what they could do in the future!
Ok…just had to get it out. This is what I’ve been searching for since DX 11/14
We all get days when the whole thing frustrates the hell out of us. I just wish they understood that different people need different things. I don’t think that they fear we are hypochondriacs, but I do think they believe in the power of suggestion in pushing us into depression. As in, if they told us, we might crack. I’m not that type of person, I would rather know what lies ahead, then be wrapped in cotton wool.
I thought that those feelings might lessen over the years, and they did, for a long time, but with my health racing over the cliff, that need has returned. I promise, that as long as I can, I will write my truth. At least one of us isn’t scared to put it all in black and white.
Take care (((Hugs)))
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I am right there with you! I need to know! What is MS, fibro, degenerative bone disease or if something new is rearing it’s ugly head! My head is spinning by being DX with so much at once. I still have a brain. And I know how to use it most of the time. Knowledge doesn’t kill you.
( I have mystery bruises too. And other injuries I have no memory of.)
Thank you for putting your life out there for the rest of us to have some of our questions answered.
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I haven’t been keeping up recently due to extreme vertigo, sorry.
This post is very open, honest, and just plain right.
You never get an answer, how bad will it get?
Not the end. My disese won’t kill me, only make me wish I wasn’t here any more at times, but I never get a straight answer. How bad can it get. Supposedly, it’s not supposed to get as bad as it does. But who knows. However, I can find people who will give their experiences.
People don’t talk about how they feel as their body dies.
It’s an unwritten taboo I think.
You write about things most won’t.
You are brave to put it out there.
You are brave to be facing this.
But what choice do you have?
How much can the body take?
I do think we are different.
We have different breaking points.
You don’t break easily.
I honestly believe we have to break that taboo. It’s wrong that people face all of this without some idea of what lies ahead.
I know it might not be pretty, or something that some won’t want to read or know, but we all go through it. Maybe not when it comes to my condition, but we still all go through it, be it through health or growing old. I have always said the condition doesn’t matter, as what we share is lifestyle, so we all have common ground. Yes, a lot of my questions are condition fixed, but many aren’t and there is still nothing out there that fills in the blanks.
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It be nice if there was something out there.
There simply should be.
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I’ve been online less lately due to my having to spend alot of time arranging for trips to the out of town specialists, getting to local appointments, and obtaining a personal assistant (which has finally come through and will start on Tuesday) but I always enjoy reading your blog posts and can definitely relate!
I think you’re right that there’s a taboo about talking about “the end.” That can be unsettling to have the question rattling around in your own head and nobody to ask.
On a practical level I have found some of the Facebook groups to be helpful and more open about such topics. Reading the content for a few days to gauge the social dynamics is helpful in identifying whether it’s the kind of group that is comfortable talking about this. Often the admin sets the tone one way or the other. There are some groups that are clearly not the type where you can bring up end of life issues because they may view it as a jinx to allow those thoughts into their consciousness, but there are other groups that are very open to talking about it. I have joined some groups that have very supportive members who are willing to discuss their experience and those of their ill friends.
It can also be helpful to speak with caregivers. I have one online friend I speak with by email now and then who is the sister of someone who is closer to death and she has been invaluable in telling me what to expect. Her brother is at a point that he’s not cognizant enough to discuss with others what he’s going through but she sees his decline and can describe it, what signs to look out for, etc. Sometimes an outside observer can provide more concrete details and although it might be upsetting that their loved one whom they’re attached to has limited time left these family members have just enough objectivity to answer the practical questions we all have. If you can find somebody like that to communicate with on an ongoing basis that would probably be a big help to you.
Thank you for this, your right, I suspect that it is our carers who know best what happens to us near the end. I just hope that I still have the ability to put much of it in here, as that has always been my intention, to write to the last second. 🙂