Tag Archives: Unable to breath

In search of help

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I’m trying so hard to move forward, to accept what has been happening in the last couple of weeks, but I still feel overwhelmed by it all. Every time that I open my mouth and hear myself talk, I just want to cry or scream, depending on the moment. I quite honestly don’t think that I have said more than five or six words recently, without a stutter or forget what I’m saying. It feels like someone stole my brain, but I’m not even sure that I want it back, well, without it, I probably wouldn’t feel so bad about the rest of it. I always knew that the day would come when I would lose control of my life and my body, but I didn’t expect it to all happen in such a short period of time.

If wetting the bed, forgetting and sounding like a fool all the time wasn’t enough, I have developed so many twitches and tremors that not even lying down, brings me peace anymore. Until now, although I knew my legs could melt from under me, I now have the added joy that they simply give up and fold. Something has happened around the muscles in my leg joints, at times it feels as though they simply won’t lock, and instead, shudder and hesitate, unsure whether to hold me or collapse. Before I never really felt scared of standing up, I have everything arranged in the house so that even if they melted, I was safe. Now, bang and they’re gone. The worst of it, though, is my arms are doing the same, I can’t even trust them to catch me. It really feels like every muscle in my body is plotting against me, and there is no way of getting them back. If you thought that the UK was having political problems, it is nothing compared to the fight going on inside me.

For five days now, I have been drinking Furosemide in an attempt to get rid of the fluid that has been collecting throughout me. Five days on, well my hands are perfect, my legs not too bad, but my feet, well they are still swollen, not as bad as they were, but they still aren’t my feet. Standing, when I can, is still painful and please don’t touch the tops of either of them, as that’s real pain. The really good thing on the fluid side is, I’ve had three clear night of not wetting the bed, but I don’t want to say that too loudly. I never thought in my life that my first action on waking would be to slide my hand under my bum, to check the moisture level before I move, but that’s yet another addition to my life.

Normally, I am really good at getting my head around things, to find a way to making it all fit and slot as just another part of my life. Right now, there is so much and so many different bits and pieces that I don’t really know where to start and even where it will end. The sheer volume of change is totally defeating me. Don’t get me wrong, I’m not slipping into depression, it’s more that I’m slipping into an exhausted confusion. I just so wish that I could have a single day, or even half a day without something dramatic, exhausting or upsetting happening. I long to wake up in a dry bed, for the internet to work smoothly, without annoying phone calls, or no people ringing the intercom, who just want me to let them in, but it’s not for me. For my fingers to understand how to type, for the tremors not to take over and sheer rubbish coming out on the screen. I want to not feel sick, to actually want to eat the food I fetch, without discovering that I’m no longer hungry. If I am, I would just love to be able to eat it without my throat hitting spasm mode and making it all too difficult. All I want is for my day to start and end as days use to. Then, I might just have a chance to turn my mind to accepting any of what I need to work through. I don’t have the time to even think about it, far less work on accepting it all. Is normality, really such a huge thing to ask for?

When just over three weeks ago, I phoned the Doctor to say that I was in a flare, I thought a few steroids and life would settle back into life. I didn’t have the slightest idea then, just how wrong I was. I have never had a flare like this, as in the past, it has been one thing, a lost arm, not being able to breathe and talk, always isolated to a set or group of recognisable nerves. I didn’t even expect a flare could take over my entire body and screw it all up. I’m feel lost. All too often, I find myself just sitting here, trying to work out what next or even how I got here. I have no answers, no idea how to fix all of this, or if this is it for the rest of my life, nothing but new things going wrong, one after another. I have to get some kind of control, some sort of acceptance and understanding, but I don’t know where to start. If you have a clue, well let me know, as I’m totally lost as to what I do next.

 

Please read my blog from 2 years ago today – Seeing it clearly

I think I have broken through the worst of this phase of uncontrolled muscle tightening, I sat last night on the settee without constantly having to put my arms into stupid positions in a hope of stretching the muscle to the point they would give in. It was totally motionless, I still did it occasionally but that was the big thing it was occasional not constant. So far the morning hasn’t been too bad other……

Could there be more?

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I sat last night on the edge of the bed and tried to talk to Adam about what the doctor had said to us when we were at the hospital on Tuesday. I was hoping that he would be able to see it from another angle, to give me something to work on, or believe. I tried putting my understanding of what was said in several different ways, but all of came to the same point. “That we had been told there was nothing they would do, as they weren’t prepared to operate on me, for anything other than a total emergency, and therefore, I was on my own. It wouldn’t matter how bad things got, how much pain I was in, or anything else. They quite simply wanted me to take more and more Morphine, to try and cover the pain, until I died.” He annoyingly just kept saying the same thing, “I can see why someone might have taken what he said that way”, then went silent. Even when I pushed by saying things like, “Well, is there any other way of seeing it?” He just sat there silent, offering me nothing at all. I could come to no other conclusion than, he had also taken it that way, but was desperately trying not to say it, because if he did, he would then have to admit, what was happening.

This is where Adam and I are so different. I don’t have a problem with saying that basically, I am being left to die. My guts are being expanded every day because the nerves won’t push the stools through, it just compacts them until everything is pulled tight. It has become increasingly painful over the last 4 years since it started and like all skin, there will be a limit to how far it will stretch. If any part of it fails, well the issues of a perforated bowel, are something no one wants. It is a fact that more and more nerves ending die daily throughout me, the time will come when those in my gut, are diminished to a point that they won’t trigger enough muscles, to do anything worthwhile. But long before either of those things happen, I am going to find it increasingly hard to breathe. I already have problems thanks to the pressure from below, pushing upwards on a weakened diaphragm and lungs, which have their own issues with dying nerves. It doesn’t matter what the doctors want to do or not, I am dying. On Tuesday, they just added another way that it might happen, that I hadn’t quite grasped. So Morphine, here I come.

I had thought that Wednesday was going to be just a day. The carer was due here to give me a shower, but having got through last week, I was feeling much better about the whole thing. I haven’t exactly been thinking about their visits, but slowly, whenever I found my thoughts in their direction, I was gradually feeling calmer as the days ticked on. Even when I started laying out my clean clothes and making sure all that was needed, was on hand for her arrival, there was calmness that was totally missing from last week. I guess that our brains work on these things without us even knowing. As the day ticked on, I have to admit there was a slight apprehension that grew, but it was just slight. I kept myself busy as always, but as 4 pm arrived, so did my first attack of nerves, nothing over the top, just enough to know it was there. It wasn’t until much later when Adam came home, that I found the perfect example of what had been happening to me between 4 pm and her arrival.

Adam is the sort of person, who if he is expecting someone to call, reacts to almost every sound from the road outside, by standing and staring out the window, to see if it is them. Clearly, I’m not going to keep going back and forward, I’d be exhausted, but I still do the same sort of thing internally. So here I was, sat here, winding myself up every few minutes and being ready to head to the intercom to let her in. I waited and waited. 4:30, 5 pm, 5:30 all came and went, and no sign of her, just me getting more and more stressed. Then the front door opened, 6pm and Adam was home from work. He took one look at me and knew exactly where I was, on the point of tears. He made a phone call, but only managed to get connected to an answerphone. Adam was furious in front of me, but when at 6:30 the doorbell rang, he became his usual amiable, jovial self. Two and half hours late and there was the carer as though nothing had happened. She said that she hadn’t been told about the need to be here at 4pm, but I found that hard to believe, as Jane, the carer who was here last week, knew all about it. By that point, I was so tired, so wound up and totally unable to even think about going in the shower, help or not.

Adam eventually spoke to someone at their office on Thursday, and they too said that the stress on timing, hadn’t been passed on to them. They have also reassured him that this will not happen again and that I will be seen as near to 4pm as possible. All we can do is wait and see what happens, but right now, I’m not exactly filled with optimism.For weeks now, I have been searching for the point where life will just feel normal, not stressed, not tied up in things to do and I can just have what feels like a restful day. Somehow, I don’t see that happening anytime soon.

 

Please read my blog from 2 years ago today – 18/06/2014 – Home to Mother

Teressa called last night to let me know that she and John will be here at the beginning of August for a week. I guess we will be able to spend quite a bit of time together as unlike Christmas the rest of the family and friends in Scotland will be working. She always sounds so happy these days, not like when I would hear from her when she was married to her first husband, then she always sounded…..

Body science

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I seem to have the twitches today. Not the normal ones that I live with, this is more like a shudder that is traveling through my entire body, but only, in the parts of me that are actually moving. If any part of me is motionless, then I don’t feel a thing. Should I move my hand and say my foot at the same time, the shudder is there identically in both. It’s not only bizarre but it is also mildly upsetting. I know that I have felt it before, exactly when or what caused it then or now, I don’t have the slightest idea. It’s one of those things like so many others, appears, disturbers me for a while and vanishes. Admittedly, it doesn’t cause me any pain, it doesn’t do me any harm, but the same can be said for much of what happens in my body and possibly yours. Yet all of us go on daily, living with these things that no one really cares about because they aren’t going to kill us. Tell your doctor, and they might give you some kind of medicine that might possibly help, but they probably aren’t any more sure about it than we are, plus, they don’t have to live with their side effects.

I learned a long time ago that I had to gauge for myself, just how important it is for me to be rid of this or that symptom. To begin with, I was more than happy to take whatever drug they threw at me. I have and still do have amazing trust in my doctors, but I learned not to have the same trust in their medications. The problem I now know has a huge amount to do with my condition. I didn’t know it then, but I do now, that PRMS is notorious for not responding to any of the range of MS medications. When I was first diagnosed, according to the internet, PRMS didn’t exist. I even questioned my consultant as to why no one had heard of it. Apparently, it was rare, that rare, that the world wasn’t interested and that included the pharmaceutical industry. There are no drugs that are out there, not even the ones designed for MS patients that will ever help me with any of it other than the pain. Both of us, were in a world of discovery as my body was only going to respond if it suited it, not because it worked for others. In the first five years, I was changing drug after drug searching for the ones that would work the best. Then I called a halt to it. I worked out a hit and miss list, I ditched all the meds that didn’t work for me, regardless what my doctors said, and I kept the ones that I could live with. That was my first rule, “It had to work for me”.

That decision was closely followed by the one that said, “Can I live with this symptom, or do I need help”. It is so easy to run to our doctors every time that something happens that is different. Just because it is something that the average person would find terrifying, doesn’t mean it is something to be terrified by. My test mark is to say, “Is this symptom impairing my life”. This tremor or probably more accurately, this quiver, doesn’t stop me doing anything. It slows me down, but it doesn’t actually stop me doing things, therefore, I don’t need a doctor, and I don’t need medication for it. In fact, the only time I really turn to my doctor is when I am in pain. If it hadn’t been for the pain my intercostal muscles and diaphragm were causing me, I wouldn’t have been diagnosed with COPD when I was. Not being able to breathe was something I had grown used to, not being able to breathe and being in pain, was something I didn’t like at all.

The medications that I do take, I don’t know if they work for anyone else, or have even been tested on animals, but they have been tested on me. My small selection that I am on now, may not be the standard for MS, but they work for me and that is what matters. People ask me all the time if I have been on this drug or that one. Partly, because of my bad memory, I’m not always able to say, but I always question, why they are asking me, and are not testing them on themselves. Yes, I have a rare condition that is known not to respond as others do, but I honestly believe whatever our condition, the only way to find out if it’s going to help us, isn’t to read about it, or talk to others about it, it is quite simply to try it, and to remember, you can come off it again as easily as you started it. Our doctors can only advise us and suggest what they think will help. Unless they happen to share your condition, they won’t have tried it personally, and don’t even assume they have prescribed it to anyone else either, remember, all forms of MS are reasonable rare. After many years of practice, when my GP read my diagnosis, he told me I was the first person ever on his books to have the condition. Most of the time, our doctors are offering us a drug they know nothing about, other than what they have read. If it doesn’t work for you, well they always seem to have another one to offer, if you truly believe you really need it.

All of us have different body chemistries and every drug will work slightly differently for almost all of us. Hence those stupid lists of “possible side effects”, so many people miss that word “possible” and assume they will get them all. To date, I have only been aware of a handful of drugs that have ever caused me any issues, and they were really not worth mentioning.

 

Please read my blog from 2 years ago today – 15/05/2014 – Look to the future

On Saturday I watched a program about the relief of Bergen-Belsen, world war 2 has been a subject that since I became housebound I have found out so much about that at school for some reason they hid from us. It started simply because I can’t stand the drivel that streams out of the both the BBC and ITV every morning, I have to say I was really disappointed to find that in all the years I hadn’t been able to see the morning offering, that nothing had changed. I honestly don’t know who they aim the programming at at that time of day, but it isn’t for me that is for sure. So I started channel surfing, I was searching for documentaries about almost anything that might have just a little more body about it, it was the history channels that I found myself……

Above and beyond

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I made a breakthrough last night and it came in a way, I never expected. The pains in my abdomen were so severe, that I, myself, was beginning to think, that an ambulance might be a very good idea. There was no bloating, no feeling that there was anything there, other than what I had consumed. The pain had shifted from imitating first stage labor, to full on second stage, just not quite in the right places. Some of it was low down, but the bulk, was in the middle and yes, across the top and into my back. By the worst of each wave, it had taken over my entire abdomen, from my pelvis to my shoulder, and I could feel it right through my body as well. Each wave varied in length and with each, I found myself naturally controlling my breathing and rubbing my back. By early evening, the pain was causing me to break into a sweat and to feel sick. I tried an anti-nausea pill, but it didn’t touch it, which told me, it was the pain, not anything else.

At 8 pm, it was time to take my meds, but, I couldn’t trust myself, that I wouldn’t throw up, so I took the decision, to make myself sick. I couldn’t believe what I threw up. It was 4 hours since I last ate, so there shouldn’t have been much there, but I found, at least, a liter of liquid, mixed with almost everything I ate at 4 pm, but no psyllium pancake. The pain didn’t change, but the nausea vanished, and I took my meds with ease. I sat with Adam and we mapped out a timeline, not just of what has happened this week, but right back and we think, that my splitting the dose of my psyllium pancakes into two, and raising the dose, could be behind some of it. We think what is happening is the first is causing a plug if you like, that moves forward slowly, not a problem with 24 hours between them, as overnight a gap is formed. But if a second is added 4 hours later, well then there is nowhere for anything that follows to go. So, I am backtracking 100%, as of today, I am back on the dose I was on 4 months ago. It’s going to take a few days for my system to clear through, and at this second, I am in bad pain again. There is nothing that I can do right now, but put up with it, but just having a plan, somehow helps. If in a weeks time, I am still like this, then I will phone my doctor. I’m waiting because if I’m still like this, then I will be able to say that there has been a huge change, in what is going on and without a doubt, I can’t live like this forever and whatever the solution is, I want it.

I know that it will sound stupid, but I quite simply haven’t been putting two and two together lately. I have been feeling so rotten and so tired in the last month, and for some reason, I haven’t been associating the fact that this pain is most likely, behind at least part of that. Because it’s been all centered around my guts, I have continued with it, in silence most of the time. When I saw the consultant who put me on to the psyllium, he was quite open, that there was nothing he could do about the pain. Until recently, his solution has worked. I was never free of the pain, that was just one of the things that was part of my life, so I lived with it. There have been many days when things were just as bad, as they have been this past week, but, they were just days and they passed. When it changed and became once again difficult to rid myself of my intestinal contents, not because I was constipated, once they move, my stools are perfect, but because there just wasn’t any movement, I did what I thought was logical, increase the dose. I was trying to increase the bulk so that it would move, but all that extra bulk is doing, is causing me more pain, but I didn’t see that either.

It appears that intelligence doesn’t grow with age. That it doesn’t matter, how many years you pass through, when it comes to stubbornness and that stupidly taught stoicism, they only increase. Just because someone says “there is nothing they can do about the pain”, it doesn’t mean, that you have to put on a smile and live with it. These last few months, that is exactly what I have been doing and where has it got me? Somehow, I have separated the pain in my abdomen, including my chest, from the pain in the rest of my body. Why I have separated them, I don’t have the slightest idea, as the cause is exactly the same, my PRMS. Yet somehow, I decided that the results were two different things. When I contacted the Doctor last month about increasing my pain relief, I still wasn’t including this pain. I was looking for help with the rest of me, and that was exactly what I got. As I said yesterday, pain isn’t just pain, there are so many different sorts, and so many different locations and just as many cures. The Gabapentin deals with pain caused by nerves, this isn’t nerve pain. This is the pain from good muscles trying to compensate, for muscles that no longer work. They are having to shove like hell, to move the contents past the dead zones, and that also hurts like hell. The answer, I don’t have a clue. As my consultant said, the psyllium provides the bulk and the lubrication, it can’t do the work of dead muscles.

So right now, I am writing because I don’t know what else to do to take my mind off the pain, but as you can see, not even this is really working. Every time I have tried to pull away from “it” as the subject, I have landed right back there. I don’t have the slightest idea now what to do, as I have taken right up to my maximum dose of Morphine and although lessened, the pain is still here, still hurting, still draining me. As Adam is at work, I don’t have to sit here with a smile on my face, I don’t have to pretend that nothing is wrong, but oddly, I’m still sort of doing so. Even now, I can’t drop the act, it’s part of me, it is me now. That’s the problem when you’ve been ill this long, it’s actually really hard, to know where the real me starts, and the act takes over, or is it possible that I have been ill that long, that it no longer matters.

 

Please read my blog from 2 years ago today – 27/02/2014 – Hypochondria?

This is day 3 so I can now say with confidence that I have a mild dose of Bronchitis, the important but odd word there is “mild”, I’ve never had a mild dose in my life. I can only guess that my meds for my COPD is holding it at a low level, so I am just going to wait and see what happens, not point…..

 

 

 

 

 

Beyond all limits

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It’s hard to believe the difference that just 12 hours can make. Last night I feared that I was on the verge of landing up in the hospital, this morning, I feel fine. Well, as close to fine as I ever get these days. I started to feel bad about lunchtime yesterday, the pain in my left lung and the whole area right down to my groin, kept going into spasm. Just sitting here was beyond uncomfortable, but there was nothing that I could do, other than push through the day and go with the flow. I have been there so many times in the past, so I expected that it would simply stay that way for the rest of the day, but yesterday was different.

I think it was around mid afternoon, that I started to realise that things just weren’t quite normal. It wasn’t just the spasms, but the left side of my abdomen was becoming more and more solid and distended. I was having to sit not just upright, but as though someone was stretching my spine, just to make space for what felt like an ever increasing mass. The internal pressure just kept growing, and as always, triggered more and more spasms in both my diaphragm and my intercostal muscles. Keeping myself busy, and my mind as much as possible off whatever was going on, was in reality, the only thing I could do, that had any effect. I frequently, though, had to stop, try and stretch my side even further in an attempt to clear whatever it was, that was hurting me.

By 6 pm, when I decided to close down my PC and shift myself over to the settee, the closest similarity to anything that has ever happened in my life before, was to say that I felt as though I was 8 months pregnant, heading rapidly towards 9. My entire abdomen was now solid, I do mean solid, not bloated or pliable in any way. The spasms were more or less constant and the only variations there were, was between uncomfortable or painful. Sitting in my wheelchair made the whole thing worse. Wheelchairs are nothing like sitting on any everyday chair I can think of. Your body is forced into what is the perfectly upright position we all should sit in all the time, but the angle of the seat and back, with a distended lump in front, isn’t comfortable in any way. Add in the action required by my upper body to move the chair, and my lower stomach was being squashed in every rotation of the wheels. The distance from one end of our living room to the other isn’t that far, but it was enough, for me to begin to feel sick. By the end of my first hour sat on the settee, I could no longer even add a sip of liquid, without fighting to stop it from coming back up. An hour on, and it had done it several times. I literally didn’t have space, for even the tiniest amount of anything.

No, I hadn’t been on a mega binge, I hadn’t sat here and stuffed myself silly all day. All I had eaten yesterday was exactly what I have been eating every day for weeks, but there I was, feeling like an overstuffed turkey. There was absolutely nothing, different about yesterday, than any other day in my life, but there I was, wishing that I could cut myself open and take everything out. The only thing that was different about yesterday was everything I have just written about and there wasn’t a single reason that I could think of, that could have caused it. In fact, if anything, it should have been the total opposite. I have been going to the loo every day since I upped the dose of my psyllium, yesterday, I went twice.

The correct dose you are supposed to take daily of Psyllium, is between 25 and 30 grams, a level I still haven’t reached. When I first went on it, I found that quantity impossible to consume, so I tried taking about half. For about a year, I was fine on that, I didn’t go to the loo daily, but I was going ever three to four days, which for me, was a massive improvement. The pain never went away, or even lessened, but I knew that I was, at least, going to the loo and that part was painless, which was a welcome and huge improvement. It didn’t last. The pain levels started rising and the amount I was passing fell. So I started upping my dose. Once again, I found one that worked for a while and then it stopped, so in the last three months, I have been slowly upping it every time we made a fresh dose of my pancakes, searching for the level that will once more work.

Psyllium doesn’t cause bloating, or wind. That is one of its bonuses, the biggest one for me, is that it doesn’t cause spasms, I have enough of them without adding more. It sounds like and has been for me, the best way of handling a half dead gut. If I stopped taking it, I would immediately find myself unable to go the loo, until I did reach the point of being overloaded. It was normal for the transition of food to take anything up to 18 days, and no matter how little or much I eat, that isn’t a pleasant position to be in. Laxatives don’t work, all they do is add in even more spasms that are quite simply unhelpful. So what happened yesterday, well other than my body going nuts, and causing rigid spasms throughout different lengths of my gut, I don’t know. What I do know is I don’t want it to happen again.

Adam couldn’t help but notice that I just wasn’t right, but as always, I did my usual, I made light of it. I wasn’t going to sit there and moan, or even scream, which was quite often what I felt like doing. Up to this point, yesterday wasn’t that unusual, just a heightened form of what I have felt frequently, everything had been notched up by not one but maybe three levels. So much so that I couldn’t cover it up, especially not when I found myself suddenly with yet another mouthful of acidic liquid from my stomach. I couldn’t hide the fact that I couldn’t find a way to sit, that dealt with the pain, but everything else, I hid. I hid my discomfort, I hid the problems I was having breathing beyond the shallowest action, as there simply wasn’t space. I hid the fact, that all I wanted was to go to bed, because there, I could stretch out with ease.

It wasn’t until just before midnight, that I started to put two and two together. Whether I am right or wrong, I’m not sure, but I think my theory has a high probability of being right. I hadn’t noticed it during the day, but I had been passing very little fluid, despite my drinking as much as I normally do. When you take psyllium, you have to be very careful to drink your full two liters or more every day. Anyway, at 8pm I went to the loo as I thought I was going to be sick, but instead, I peed for Scotland, then again at 9 pm, before I went to bed. I always wake around 6 am to empty my bladder as not surprisingly, it’s easy to sleep 12 hours but hard, not to need the loo. Last night, I woke before midnight and once again, found my bladder fit to burst. In those three visits, I swear I must have passed the entire amount I had drunk during the day. It was then I started to think. Although yesterday was the worst example, when I am that uncomfortable, just like yesterday, I don’t think I am passing any urine during the day. I am guessing, but I think that my body is collecting the fluid. When it collects in my already space shy abdomen, the pressure increases and the rest follows.

For years, I have been supposed to take Furosemide to deal with this excess fluid, but I have to be so careful with it, as I have Vasovagal, and Furosemide can aggravate it. Falling unconscious isn’t pleasant so I am inclined not to take it at all. I don’t know if I am right, but I am going to try and take enough to make me go to the loo during the day, and see if that changes the growing discomfort, I have during the late afternoon and evening. The next few days will be my testbed and the risks, well now that I am in my wheelchair, they have been reduced, it’s worth a try.

This morning, just like yesterday, I got up and moved my bowels with no issues. I have just taken my first small measure of Furosemide and have my fingers crossed that today will be totally different.

 

Please read my blog from 2 years ago today – 23/02/2014 – The merciful component

On the news the morning once more the were talking about the demise of bookshops on our high streets and how people just aren’t going to town to buy books anymore. Right now in my living room I am surrounded by…..