Different sides

To my Neurologist, I am having “MS Hugs”, to my Respiratory Consultant, I am in danger of dying at any minute. Which in anyone’s book, are vastly different descriptions. I don’t know who named it as such, but I long ago was left with just this growing desire to find the person who named it as an “MS hug” and slap them. A “hug”, is something so special that it doesn’t matter who gives us one, it has a healing effect. An “MS Hug” is anything but healing. The first time I had one I hadn’t actually come across the phrase, all I knew was that I suddenly felt as though I had a vice tightening around my chest. Eight years on, for me it has become the most dangerous of the plethora of symptoms attached to my health.

Regardless what form of MS you have, all of them can produce a “hug”. In reality, I suspect that anyone alive could actually experience the mildest version. If you aren’t that fit and suddenly decide to run, well that pain between your ribs, the one that stops you from moving, that is a mini hug. In its most basic form is a quite simply, a spasm in the muscles between your ribs, the intercostal muscles, which does mean you can have a single sided hug. When put in those terms, it doesn’t sound like much, but what few of the descriptions I have come across don’t tell you, is an “MS hug” can appear in any part of your torso and it can also be of unbelievable strength. As you might have guessed, today is a day when I am being troubled by my version of an “MS Hug”.

Long term readers already know that one of my other conditions is COPD. I actually have Emphysema, but on the good side, it is more than livable for someone who does nothing. I don’t exactly go mountain climbing or run up and downstairs all the time. I, unfortunately, have a double whammy, my PRMS decided to get in on the game. If you think about it, the whole process of breathing is controlled by muscles and every muscle is controlled by nerves. If you look at one of those pictures of a human without skin, you will see with ease that there are a lot more muscles involved other than the intercostals, when it comes to breathing. Every single one of those muscles is now causing me problems when it comes to breathing. The biggest and most important is the diaphragm, this muscle is causing me problems almost every hour of every day. It is rare now for me to be without an abnormal tightening, a feeling as though it has been wound tight and can’t operate normally. Add in spasm in my intercostals, and more dramatically the large plate muscles that cover both the internal and external of my ribcage, and breathing can get really difficult. As I said earlier, “hugs” can appear not just around your chest, a few months ago, I started to feel them much higher up, just below where my neck joins my chest.

I felt it was important to give a fuller description of what is happening to me, and how my PRMS is causing problems. As I said in my opening sentence, the two consultants involved would look at what is happening in two very different ways. I’m not aware of others ways this can occur, but as most people, I know about what is happening to me, not in detail to the million other people out there. It does, though, highlight just how easily one condition can cause problems, which mean we have to have it looked at by a completely different set of specialists. I put up with the “hugs” for years, simply because I saw them a problem caused by my PRMS, therefore, no one could help me. I was right and wrong at the same time. Neither set can stop the “hugs” doing what they do, but the Respiratory Consultant, have me on a range of medications that are keeping my actual lungs, in as good a condition as possible. I have written before about the inhalers, the nebulizers and so on which I take daily to keep my airways as open as possible, so when I do get a full on attack, so far, I have been able to breathe well enough to stay alive. I do have to add here, that so far, I have only ever had a handful of attacks that I have found myself feeling as though I might be in real trouble, but I’m still here. My biggest fear and I know the doctors biggest fear, is that they all choose to lock up at the same time, that could with ease, be lights out.

I was lucky, I had had mild asthma all my life, so when I told my GP that my breathing was getting more difficult, he put two and two together and luckily came up with ten. Mind you, I didn’t once mention that at the same time, I was getting horrendous “MS Hugs”, other than the ones in my diaphragm. It clearly wasn’t my Asthma, it was quite clearly my PRMS. Things though could have been very very different, if I’d just been referred back to my Neurologist. The longer you live with an illness, the more we are inclined to just brush things aside. We get into the habit of blaming whatever is our main condition for everything. We also dismiss the possibility that there could be anything else involved, or that anyone other than our personal pet consultant, could possibly help. Surely, if it is my PRMS at the root of the problem, then I should go and see the Neurologist, shouldn’t I? Not always, sometimes, the people we need help from, are the people who actually specialise in the result, not in the cause.

I have had my eyes opened to that fact. I hope, that what is happening to me, opens the eyes of those who read this. I don’t think it matters what our core illness is, or what we think we know, sometimes, we just need to ignore all of it, and put our trust in a whole new set of possibilities.

 

Please read my blog from 2 years ago today – 11/04/2014 – Learned reactions

I really am wishing today that there was a shop where I could buy myself a replacement foot, to be precise a left foot. When I started finding myself sitting with only the balls of my feet on the floor, I thought that the only problem I had ahead of me was the shorting or my calf muscles, but now I know differently. I am getting more and more pain in my ankles the worst is my left one, I can only think that this constant position of wearing a really high heeled shoe, but without the shoe, of course, is straining and also ceasing up my ankle joint. Even when I am sitting with my foot off the floor, or even lying down, I keep finding my foot in exactly the same position, part of the result…….

I can dream

I woke this morning with pain off the scale in my back and my upper legs. I know that it’s going to take a few days, by yesterday I made a decision to try and relieve whatever is going on inside me. I was forced into upping the dose of Psyllium as the quantity I have been taking for the last couple of years, just wasn’t working. Years ago, I was told that I had IBS, because, I was complaining about the pain, but following tests at the hospital, it turned out that I don’t. The consultant said he could understand the first diagnosis, as, many people these days think that that is what they have. In my case, it is yet another thing that is down to my PRMS. All forms of MS can cause problems with nerves where ever they are. Mine have caused all the muscles responsible for the transit of food, to simply not have the strength to do the job properly. My problem wasn’t due to lack of fiber either, as the bulk of everything I eat, is high on the fiber scale. It would make no difference what was in my diet, I was always going to have problems. He suggested the Psyllium, something he actually says everyone should have daily and forget “the rubbish of the 5 a day, the government promotes” his words, not mine, as it is far more effective. It does two things, firstly, it is a bulker. I may eat well, but I don’t eat a lot, the Psyllium would make up for that problem and create the bulk needed to help move everything through me. Secondly, it has a slimy quality, the reason I make it into pancakes, drinking it, is impossible, I don’t care what anyone says. The new dose did the trick when it came to getting things moving again, but the pain has been ridiculous.

I have come to the conclusion, that the double dose, is forming a huge bulked up lump, that my muscles are finding just too difficult to shift. They’re doing it, but slowly and with a lot of complaining. Yesterday, I took my huge pancake and cut it in halves, to be eaten morning and late afternoon. With my ultra slow transit, it means that I have several days worth to still get rid of, hence the pain. Being overloaded, put pressure on my spine and all my internal organs, including my lungs. From where the worst of the pain was, I knew that it was probably going to be another 48 hrs before I would next go to the loo, and I just couldn’t bear that. Taking a laxative, would do only one thing to me, cause hour after hour of increased spasms that might, but usually, don’t help at all. Once more, I had no choice but to try a suppository. As much as I don’t like them, they are far more controlled and act far faster. Yes, they cause more spasms, I do realise that, but at worst, the spasms they cause will last no more than an hour. It took 25 minutes, and it caused me some huge spikes in pain, but it worked. Now, at least, I have some hope that I have created space for the rest to move on. About an hour ago, I gave up and took one of my Morphine boosters so I’m not perfect, but neither am I still cringing every few seconds. At best, I expect this to settle over the next 4 days, at worst, it could take a week. It’s one of the oddities of my life, that just having a backed up intestine, that I can do nothing about, it means I have problems standing, lying down and breathing.

It took me months to get my head around the whole thing, as when it first went off the scale, a couple of years ago now, I honestly thought I was dying. Of all the things my PRMS does to me, it honestly is one of the things that I find the hardest to deal with. Between the so-called “MS Hug”, spasms in my diaphragm being made worse due to the pressure from below, and the restricted space caused by that pressure, meaning less space for much-needed air to fill, death seemed to be the next logical step. Apparently, it’s a 50/50 split, as to whether it will be my COPD or my PRMS that will squeeze that last breath out of me. Trust me, I would love to have straight forward IBS or constipation any day. Over the last couple of months, I have been having growing problems, hence, my desition to double the dose. I did last month add in half as much again from the original dose, but it did little to nothing. Sometimes it feels as though my life has become one long experiment. I get one thing sorted out, and something else falls apart, and I am back trying to find what I need to do, just to be comfortable enough to go on. I suppose that is one of the reasons that our doctors fail totally when it comes to helping us to live. How do you treating something that is never totally the same, from one day to the next?

When it gets me as badly as it has at the moment, I spend a lot of my day just checking my oxygen levels. It is one of those things that is easy to know when it’s wrong, but hard to treat. I have all the normal inhalers which, at times, I grab and use, but most of the time, they do nothing. As yet, they haven’t invented an inhaler that deals with spasms. At best, they help with the COPD side of things, but if it’s not my COPD causing the worst of it, all I can do is keep watching those numbers fall. I know that the doctors are simply trying to give me a fighting chance, with all the drugs that I take for my lungs. If they are as good as they can make them, will maybe, just maybe, I can keep breathing. I knew on my second visit to the chest clinic that they were a bit lost as to how to help me, and that other than the consultant, not one of them had seen anyone like me before. They are used to dealing with lung conditions, my problem is the mechanical system, not the lungs themselves. If they were in a normal body, well yes, they’re not the best, but they’re a long way from done.

I have had this dream now for years, that something new will appear and that after they have done all their horrid tests, that they will turn around and say, “Well this is really simple, one little operation and it’ll be fixed”. Mind you, I doubt there is a surgeon out there, who would want to operate on someone like me, but I guess, I can always dream.

 

Please read my blog from 2 years ago today – 07/02/2014 – Protection through love

I’ve been reading snippets from previous posts and my feeling that my ribs and diaphragm are playing up more seems to be true, not that that helps really in making them better, but it makes me feel better, as I KNOW I am……

 

 

 

 

 

Relax now and forever

Recently I have on several occasions caught my reflection in the bathroom mirror. Not for my normal reason of thinking I have once again gained weight, but because of my complexion. It may have been like this for a long time and I just haven’t noticed, but there is no doubt that it has changed. My long searched for that perfectly pale appearance that I have admired for years has appeared by itself. From childhood on I have had a great admiration for the very few redheads that I have met who possess this look and didn’t have freckles. Their skin always looked almost like fine porcelain with a forgivable light flush over the cheeks, but no other blemish to be seen. I have spent more than half of my life trying to avoid the sunshine and hiding what colour I had with the best concealing make-ups that I could buy. I wasn’t trying to replicate the overdone look of a goth. It wasn’t the undead that inspired, more the look of an a fine 18th-century lady, but that bit paler and less powdery. I was never totally happy with what I managed as a pinkish colour always seemed to be there. Out of nowhere and without any intervention from me, it has now suddenly appeared. It’s not perfect, but it’s good enough that even light makeup would smooth out the final touches of colour.

Unlike most women, I look in a mirror just once a day, to say that I look is probably an exaggeration. I stand in front of it as I cleanse my face before replenishing my daily moisturiser, my one concession to normality. With no make-up, there is no reason to really look, just a glance to assist with not getting the cream actually in my eyes, rather than around and on. All my adult life I have had a rather annoying red area of skin, front and centre of my Décolletage. It didn’t seem to matter how much I kept it covered or stayed sun free, it always looked as though I had had a low-necklined top on and had just come in from walking in the sun. Yet just like my face on first look it too was white and without the red tinge, I was also very aware of veins I have no previous memory of being there clearly on display. The more I looked the more I began to notice that it isn’t just the colour that has changed. The skin on my face, neck and chest all had a look that I can only describe as tissue paper. My eyes have become deep set and black, so black that they almost look as though they are bruised, especially on either side of my nose as it reaches up almost to the bridge. If it wasn’t that I am not badly wrinkled, I would say that I have prematurely aged. I have only ever seen skin with this look on the elderly but not once on smooth skin. It appears that my health is no longer as invisible as it once was. After years of knowing that the way I walked or the fact that I was sat in a wheelchair were the only true clear giveaway to the casual observer. No matter what I read or others said, I didn’t believe it would be invisible forever. Not once thought had I read someone describing any of my conditions as invisible until you reach year whatever, but I guess eventually even the invisible takes its toll on our bodies. Even on my best days, there is no hiding it and no doubt.

I have always believed that if you accept your health and work with it, that you lessen some of the adverse effects of it. I have come across many people who have lived with long term illness and noticed what I believed to be a side effect. I have seen it especially in those who have conditions that brought chronic pain with them. Nearly all had larger numbers of wrinkles and a look of ageing that seemed exaggerated for their age. To me, it makes total sense that if you spend your entire life fighting and being stressed by pain and symptoms that you were determined to control, there had to be some effect on everything from the rest of your health to your appearance. Without enough rest and not dealing with the areas of your body that became tense either because of pain or stress, well changes had to appear. We have all seen people who in their youth were perfectly normal in appearance, but as the years have taken their toll, their bodies have become twisted and deformed. Logic alone says that if you hold your body in a certain way to guard against pain, you are doing damage to you joints, spine and even your tendons and muscles. That along with the fact that I know that the longer you let that go unchecked, the more pain you are creating elsewhere. So OK, I am not a doctor, but I don’t think that you need to be to work that one out, so I started to take action.

Before my body got the point where sleep is now something I often find myself fighting against rather than fighting to find, I started using relaxation techniques. I know some people use things like whale song, or classical music to help, I personally couldn’t stand any of them. When I was in my 20’s and 30’s if I wanted to remove stress, I danced. I could dance for hours and I did so to either rave music or extreme metal. There is nothing like moshing for an hour with music as loud as you can bear it. I have to admit that the day that dance started to cause more pain than relief was as devastating as the day that I finally realised that having sex was no longer part of my life. Relaxation had to come from something far more gentle. I knew of a technique that I had been taught when I was in the hospital once. It isn’t something that works straight off for all and there is a large degree of practice to get to the point I am at now. Personally I would suggest silence, but some prefer that music of choice. Either way at first you do need to be lying down, as comfortably as you can, not just in position but temperature as well. Once comfortable first start with your breathing, make sure that you breath steadily and slowly. Everything about you is about to be slowed down and brought to what I would call a peaceful state.

You start at your feet and you work your way up your body, starting with your toe on just one foot, you tell each piece of you to relax. Keep the words in your head smooth and soothing in nature, you are working on putting your entire self at peace. As you talking to your body, imagine a wave of peaceful energy travelling from your head down to the piece you are working on. Once relaxed, then repeat telling it to sleep, before moving to the next part. Keep talking it through in your head, it keeps your concentration, if you don’t want to go to sleep, just go to the relax point and move on. I know that some find tapping their fingers rhythmically on their chest helps to keep your mind fixed on what you are doing. I don’t, in fact, I find it distracting. At first it might take you right up to the top of your head before you are asleep or feeling rested, but the more you practise, the less of you will require to be talking to yourself. I have been doing this for about 14 years and I no longer talk to myself at all. All I have to do is make sure those shoulders are down as I explained yesterday and to send those waves of peace down through my body until I drift off. I use a similar process during the day whenever I feel tension or stress building. It is also the process that I use whenever I find that I am letting my posture slip. I can’t make the intense pain that I feel go away, but there is a fact that I have found. Using this process does reduce the impact of severe long-term pain. By constantly correcting my posture and at the same time working on keeping myself relaxed, as hard as it can be at times, it changes things. I explained yesterday how one pain triggers another, if I have been sending what I call occasional reminders throughout the day, when bad pain appears, by working on controlling the rest of my body, that first bad pain doesn’t seem to grow so fast or so intensely.

Like any system, trick or theory, it doesn’t always work as well as I would like, but that could be because I want to be pain-free. Just like everything else in life it isn’t alway convenient to use either. I often don’t follow my own rules. For example if I needed it right now, I would probably half use it, by fixing my posture, but leaving the rest until this was finished. What I do know is that I still don’t have the hunch I feared when I found myself with constant pain in my stomach and chest. A few months ago when I was caught in almost constant pain, I found myself for a short while giving up on it. Which was stupid. I remember writing a post about how I had fallen into crumpling to on side. It was causing pain in my neck and shoulder, making everything worse. By working on using my core muscles to support my body rather than going with the natural desire to crumpled, my muscle although much weaker than once are now able to hold me upright again. We are all caught out constantly by spasms that appear out of the blue. Even for them it can help, remembering both postures and breathing, gently massage the area. Whether it is the processes or the distraction, to be honest, I don’t care, it helps to make my life more bearable and, therefore, gets my vote.

Oddly, being ill takes work. It also takes trying anything that comes your way as a possible answer to your problems. I know there are some great side effects from constantly working on my physical stresses and tensions. I as a person have become far more laid back about almost everything. I also believe that those mental changes have impacted on my health as majorly as the physical ones. Being relaxed changes everything.

Please read my blog from 2 years ago – 21/08/2013 – Trying to answer that question

It is amazing just how fast MS can bring you down to a point where you feel like giving into it and then just a couple of days later, you are once again able to cope with all of it again. On Monday I could have with easy just……

Body shutdown

There is something that I know Adam is very use to and that is the point in the evening when my body goes into shut down, I can be sitting quite content beside him on the settee watching what ever is on and my eyes will slowly shut, I’m not asleep, it’s just suddenly, keeping my eyes open is the one thing too much. I can still sit there, still content but using my eyes has become unimportant, I listen to the TV and even talk to Adam, but my eyes are closed and their role unimportant. My legs and my arms will then start to go numb, usually legs first, I loose them. That’s really the only way I can explain it because my awareness of them is more by their absence than their presence. I can sit like this for ages, making the logical step of going to my bed is actually even beyond me as the thought process required is somehow avoided. One thing that I become incredibly aware of at this point is my breathing and how shallow it is, almost as my body needs and looks for little oxygen. Most nights it is me that eventually spots the logical step and I say goodnight before vanishing into the bedroom and true oblivion, but occasionally if I stay there for more than half an hour Adam will make a comment, not telling me to go to bed but reminding me that that should be the next step. Some nights I can vanish as early as 8:00 others as late as 11, but no matter what is happening I can’t stay up later.

You would think that if I am so clearly tired that I would go to bed and sleep but that isn’t always the instant out come and most nights I lie on my back motionless and so aware of me, that I find it a great point to listen to my body. During the day there a distractions that mean your mind has no space to hear the more subtle moans and groans, if I don’t notice them, you might think they are not important, but they are. Those little warnings allow me to prepare, MS isn’t normally a wake up in the morning and you can’t walk type illness, it is a longer slower process and if you listen the warning are there. Probably my left arm is the best example of this that I have.

I remember that for about a week before the lets play dead day, I had had loads of warning. My arm from my elbow to my finger tips became more and more painful, with spells of welcome numbness when tingling replaced the pain, my strength slowly started to slip away and it so happened that it was the week we were putting up the Christmas decorations. I had sat down in tears several times as I either didn’t have the strength or the dexterity to do something, I wonder now if I had listened then and requested a course of steroids if I would have lost it as I did. I didn’t listen and I had that wake up moment. In a darkened bedroom I had put my dressing gown on and headed into the kitchen to make the morning coffee. I put my left hand out in front of me to push the kitchen door open and instead of the palm of my hand feeling wood I felt nothing but heard the thud of knuckles hitting wood. It took years to get back the use I have of it but I will never again have the strength or movement I had before. So now I listen. I take that time to simply lie there waiting to feel anything, anywhere and ready to call out for help as soon as I have an suggestion that something is going wrong. I try to check off the feeling that night, compared with those of the last time I lay and listened, I note the changes and I try to analysis the possibility at that point. I would rather take another ridiculously huge doses of steroids than loose anything else if I can avoid it.

I don’t think it would do anyone any harm to listen more to what they are being told by their bodies, we all ignore things until it is too late, I would seriously suggest if you haven’t listened lately, that you take a little timeout of staying busy, to get to know what it is telling you, if it could save you from just one future problem, those few minutes it takes to listen, could be the most important.

The law, morals and luck

There are those days when you feel that everything is designed to not go quite the way you want? I don’t think that I ask a lot out of life. My home, my husband, my children, a job and may be a few good days of health every now and then.

Last summer I thought that I had everything I wanted and I was happy accepting each day as it came. Then I was hit by redundancy. If I had been fit enough to get out there and hit the agencies and businesses I know that I would have been working again by Christmas. Here I am 5 months on sitting at my PC as always, but writing this, applying for jobs and playing games, not working. If I was lucky enough to have bank full of money then, I could I suppose get used to this, but I don’t, and I don’t want to!

To add to everything I found out a few days ago that I probably had a case against my last employers to take them to tribunal. It was so tempting! The thought that I might get a few year wages really appealed. It would have been enough to pay off the rest of our mortgage and have a little left over. I had spoken to someone I used to work with and they confirmed several things that confirmed my suspicions and 2 Lawyers told me to go ahead with it. I thought about it all yesterday, even filling in the form to start the ball rolling. When I woke this morning I was really close to stopping it there. I was looking for something to push me further in that direction or make me push the send button on the form.

It is hard enough trying to get a job without another negative point against me, luckily I got the shove I needed. Teressa, my daughter, had emailed me questioning if it was the right thing to do. She will be pleased to know that I agree! No employer want someone who has taken a firm to tribunal. So right or wrong my lawyer contact has ended. Even when you know you are in the right it somehow is still wrong? I love life!

That sorted I set out on my normal search for work, I really am getting fed up hearing how great my CV is but still no job. It is always the same, sorry but this job isn’t possible from home. I wouldn’t be applying if I really thought it wasn’t possible. I can prove that I can do it, just let me show you! I think this really is the cruelest part of MS, not the pain, not the fatigue, not the mobility problems or the isolation it has enforced on me, it’s no one having an open mind to see what I have already done and what I can do in the future.

I started this post 4 days ago but I really haven’t been feeling that great and I just didn’t have the energy to return to it. I think the effects of my Dad dieing, the job situation have taken its toll on me, my MS kicked back hard. I try not to tell people about how I feel, so many o them take the slightest comment as an excuse to try and wrap me in cotton wool. I like you, need to live. I like you, get kicked from time to time. I like you, have the right to feel ill without it being something hugely wrong. I unlike you have MS, so what, I’m still able like you to do a lot of things.