Breaking the fear

I have often found myself wondering when the day will come, that I get cabin fever. If you watch TV, it seems to happen to almost anyone who is confined for too long, but it’s those final two words that I expect are the key to cabin fever, “too long”. What is too long? Well, if you listen to the inhabitants of places like Alaska or Finland, too long, can be the months of darkness that every winter brings. If you listen to the average teenager, it’s probably around a minute, especially if their friends are going out. Yet, here I am, in my 9th year of being housebound, and I too spend my winters in virtual darkness. Not because the sun doesn’t shine here, but because the winter is cold and shut curtains, keep the warmth in. Recently, I have been taking it one step further. Again to save money, I have always been sparing in my use of electric light, but I was finding myself getting headaches, and my desk lamp appeared to be at fault. For years, I have been able to touch type, but never truly trusted myself to get it right. So I took the decision, that I was going to turn that light off, and go for it. Guess what, I can type far better than I thought, in fact, I’m making fewer mistakes, as I can’t just take a glance down and then hit the wrong key. That discovery, I think, is also a clue to my not being caught in a fever.

Although inside, I believe myself to be the weakest person alive, always doubting myself and never sure about anything, I know that isn’t how I come across, nor is it the truth. I am just the same as everyone else, my self-doubt levels are no higher than anyone else’s, nor is my strength or anything else about me. It’s all about self-belief, something all of us lack. It is hard when we compare ourselves to others, especially when they “appear” to be doing so much better than us at almost everything, not to see ourselves as a failure. It’s just the same when it comes to our health. Because we share the same diagnosis with someone else, or they share a symptom that we have, we can’t help but compare ourselves to them. We totally forget that different people are just that, different. We ignore the fact, that something as simple as a spasm, has a huge range of possible pains attached. We just see that apparently others cope better, but do they really? Our self-doubt grows even deeper when it comes to picturing our futures. I have had countless people say to me, that they don’t understand how I can be content, having been housebound for so long, because they can’t picture themselves being where I am for me than a day. Well, believe it or not, 15 years ago when I was diagnosed, neither could I. I like anyone else, looked with awe at those who were even partially housebound, surely all I had seen meant that cabin fever was a forgone conclusion. Yes, I could like anyone else, manage the odd week here and there, but weeks, months or years, never.

I have looked at my situation in so many different ways over the years. I have come up with theory after theory, and each has held rings of truth, but none totally fitted the bill. I don’t think that living as I do has any magical formula that makes it work, nor are there a set of steps that anyone can take. In a way it’s a little like my touch typing, it’s simply about doing it. Every single component of our health is simply about doing it. If you are coping with your health right now, don’t worry about the future, as when you get there, it will be just like the now, you’ll cope. Every step up in my health, at first, felt daunting. As the pain levels rose, I thought there was no way that I could take it, but I did and I do. It is a little like being on an escalator that you have been climbing for years. The higher up the stairs you travel, the more daunting the next step level seems, but when you do take that step, somehow, it feels right, a natural progression and nothing like you thought it would be like. By the time you reach the step level saying “housebound”, well, your ready for it. Your body doesn’t have the energy or oddly, even the desire to not rise to that step, it’s natural to be there. Hence no “cabin fever”.

I have no desire to go out, in fact, it is now the total opposite. The whole idea of leaving here to attend a hospital appointment, is more daunting, than the idea of taking that next step up my stairway. If there is a trick to surviving chronic illness, it is in looking only at the step you are on, not the one that is ten or twenty levels above you. Once you are on that escalator, you can’t stop it, learning that is the acceptance phase. I have come across people who are on that escalator and they are facing the wrong direction, desperately trying to run down again. It doesn’t work, no matter how fast they run, the escalator, holds them, just where they are, they just get more exhausted and more worn down. Once you have accepted, well, the rest just follows. It isn’t about hidden strength, or any of the other things, that people choose to pin it on. It’s simply about moving forwards and upwards. It doesn’t matter whether it is housebound, new symptoms or pain levels, as long as we’re facing up the escalator, we cope, we all do.

Right now, I am caught up in pain levels that are pushing me hard, but I am coping because I know that I can. If there is one thing that I have learnt in the last years, it is that. Those people in Alaska or Finland who suffer from cabin fever each year, do so because they’re healthy enough to go out. They still have the desire to be out there in the world, unlike those of us who are housebound by our health, there is no comparison between us, we’re in different worlds. So don’t fear your future because of how you’ll cope with it, because, you already have the tools to more than cope. You’ve learned them all already and you’ve already learned the greatest tool of them all, how to adapt.

Tell me it isn’t so

I have had a few tweets in the last weeks that have left me somewhat concerned by what is happening in the outside world. I have found some of them disturbing enough, that I am beginning to be truly glad that I am housebound. I had realised before I was no longer able to go out and about myself, that there was an element who had developed a somewhat malicious attitude towards the disabled. When I recently wrote a piece about how things were several years ago, I had my eyes opened by some of the comments, but now I am getting the impression that it is even worse than I ever thought possible.

I received a tweet yesterday, which ended with this ” it makes it harder though when it’s not understood; the pain doesn’t leave me the energy to explain/defend”. I found that so wrong, so distressing that someone should even feel that way, that I responded with the following “We should never have to defend ourselves, just because pain can’t be seen. The fact we feel it makes it real enough!”. I was shocked to find that it received four retweets and fourteen likes. If you don’t do twitter, trust me, that is really high, considering, it was a reply tweet. This isn’t the only time in the last few months where I have spotted a high response to tweets of this nature, something I don’t remember even just 4 years ago when I first joined. Mention anything to do with being treated correctly by others, and the responses have risen across the board, and not just when it comes to the disabled. I can’t help but get the feeling that there has been a huge mood shift out there when it comes, to something as simple, as being a caring human being.

As an outsider, someone who has little contact with the real world, I find this distressing. If the world were filled with caring people, that tweet would have been ignored, or better still greeted with confusion. Clearly there are far too many, who have found themselves having to explain what is wrong with them and worse still, feeling as though they are under attack, simply because they are ill. When I wrote the post about my past a few weeks ago, several people came back with their own explanations as to what was behind it. The most common one was, to place the blame on the government and their policy of forcing the chronically ill, back into work, even when they aren’t fit enough to. I would have expected, that if that was the case, people would become more caring not less, as if I thought something was unjust, that would be my response. Yet the feeling seems to be, that people are actually agreeing with the government, and now see all sick people are scroungers and fakers.

It’s not only on Twitter and here in my blog that I have come across this change. Yesterday, I can across a blog, from a woman who is actually scared to leave her home, because of the verbal attacks she has suffered. I am at a loss as to how the world has changed this dramatically and I’m sorry, the government theory to me just doesn’t wash. There is hardly a week goes by, that we don’t see yet another case, of a person who has been fighting to get, not money to go down the pub with, but money to allow them to eat. Money, they are entitled to, who have long-standing medical conditions that they will never recover from. How can the millions who watch these heart-wrenching stories, not feel compassion? How do they watch, then go out and attack someone who is in a wheelchair, simply because they are ill? I’m sorry, but I don’t get it.

By chance, I caught part of a program that was on last week about discrimination. It was looking at racial discrimination, but something was said in it, that set me thinking. They were in a poor area of a large city, a woman who was receiving benefits, simply because she didn’t have a job, was verbally abusive towards an Asian man standing outside his shop. Afterwards, she realised she had been caught on camera and she tried to explain herself, the telling bit, were her last words, “I’ve got nothing against him, I’m, I’m just jealous.” Could we really have reached a point, where there are people out there, who are quite simply jealous of us? It’s a thought, that I find disturbing, in so many different ways.

This is now my ninth year of being housebound. The last time I was out and about amongst people who I didn’t work with must be, two or three years before that. As those who have been reading for a while know, I worked right up until 5 years ago. I was never in the position, or locations, where I might have mixed with people in those financial positions. I have been treated appallingly at different times in my life, by both those I knew, and by strangers, but I can only imagine, what it is like to be shouted at simply because I am disabled. I truly feel sorry for those who have gone through such a thing, but I also feel sorry for those who are carrying such abuse out. They may be shouting out that we are scroungers and so on, but I think it is their own position they are really shouting about. We the disabled, are highly visible and easy targets. It leaves me cold that society has slid into such a position.

Those of you reading today, hoping that I would give an update on my abdominal pain, well, your right, I have been avoiding the subject, but here’s an update. It’s a bit better, above my normal, but nowhere near as bad as the other evening. I have decided, though, that I am going to call my doctor when his surgery opens next week, if for no other reason than to get better pain control. Whatever happens, there is no way that I can keep on living with this pain, something has to change.


Please read my blog from 2 years ago today – 28/02/2014 – Disruptive sensations

My day is once more running behind but for once it isn’t my fault. I actually was up an hour early this morning as I woke unable to cough and really bad pain in my throat, sleep wasn’t going to be an option, so I just got up, with thought that I would be able to rattle through everything and have an early sleep this afternoon. Adam has taken a long weekend so he is still asleep but is actually going out…..





Above and beyond

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…..






Which is worse?

You would think that after all the years I have spent living with pain, that I would by now be used to it. Well, I am. I’m used to the pain that comes from spasm. I used to the continual ache of muscles, that no longer have the strength, to do beyond the most basic of the acts they were formed to provide. I’m used to neuralgic pain that flies through my body, without limit. I’m even used to the pain that my intestine like to cause continually when your talking of the endless ache, or even those sudden breathtaking moments, a pain simply caused by internal movement. Even the lock downs that take my breath or limits the size of each one, but somehow, this time, is different. This is no longer everyday pain, but it is now every day pain, pain without a break, or a rest, a pain that giving me no peace.

I am getting so fed up with this pain. Despite everything that I have done, everything that I have tried, and yes, going to the loo daily, I am still in pain and one that is for some reason, getting sharper and stronger. Even last night when I woke to go for a pee, the second I moved, the worst of the pain came straight back. I was up for less than ten minutes, and by the time I returned to my bed, every second of my rest had been undone, as even the unexplainable sharp pain I have in my side, that goes deep into my lung, was there. Normally, it doesn’t appear until I have been up for several hours, but not today. Probably, because I was so aware of all of it, I returned to only a light sleep for the remaining hour and a half, so now, I’m tired as well. My abdomen no longer feels like it is going to explode. The furosemide is doing it job and removing the excess fluid from my tissues, so yes, my stomach is still flatter and the pressure is less, but the pain is worse. It’s almost as though, that stored fluid, was acting like cotton wool, dampening my perception of what was really going on.

It is all too easy to acquire an attitude of, pain is pain. Every day that you live with it can become, just another day. In fact, in many ways, you have to. If you spent your time reacting to and being worried by, every pain that you felt, you would literally go mad. PRMS, and I expect, many other chronic illnesses, produces pain. Just as I said yesterday, that attitude of “I’m fine” to my general overall health, well it’s just the same with pain, normally “it’s just there”. Then occasionally along comes a new set of pains, ones that don’t belong, ones that don’t quite fit the norm. So what do you do, when it’s more than “just there”. Well, you do all the things you’ve learned to do. You take those painkillers, the ones your doctors tell you will help. You do every form of relaxation that you know of, and you tell yourself, “it’s just there”. Of all of them, oddly, the final, is the one that calms your mind the most. For a person who hates liars, I have over the years become quite proficient at them, as I seem to have also learned to believe them, at times.

I have never asked one, but I bet, doctors hate our pain just as much as we do. In a “normal person”, pain is a sign that something is wrong. In us, it’s a sign that we’re still alive. I may feel useless against this pain, but I’m sure my doctor, feels even more so. Painkillers don’t kill pain, at best, they dampen it. They bring it down to a level where we can carry on, get on with our lives, and tell ourselves more lies. Worse still, we tell our Doctors the same lies. I’ve heard myself doing it, letting the words, “I’m fine” or the equivalent of “it’s there”, rather than telling him the full truth. Why do we do it? Why do we say, that it’s better, when in fact, the better is tiny, and what we wanted was huge? If I have done it, then I can only guess that other have too, and we then wonder, why the drugs we have, don’t work as well as we’ed like?

No matter what I have done, it is now a full week since this pain changed, stepped up, whatever you want to call it. What was once an ache, now has sharp corners and because of their position, all I have to do is move, and they tell me they are there. Is it any surprise that I am fed up with it? That today, just like yesterday and the day before, all I want is peace. I’m fed up and I’m feeling useless, and I’m not sure which is worse. I haven’t known pain like this or as persistent since I was giving birth to my children. Which is, in fact, a rather fitting description of it. Just like childbirth, the worst of the pain comes in waves, but unlike childbirth, when a wave hits, it’s there for several minutes, anything up to fifteen. Also unlike childbirth, when one of those waves hit, the pain radiates out and can reach from my shoulders down into the tops of my thighs. I quite honestly, feel as though I have been in labor for over a week now and with no sign of it giving up. The mornings do seem to be less intense, but as the day goes on, it just gets worse and worse. By night time, I honestly don’t know what to do with myself. Lying down, helps, and if it wasn’t for my inbuilt off switch, I don’t know what I would do. Sleep is my glorious escape. I honestly don’t know how I do it, I wish I did, but no matter what, I go to sleep and I stay there until my bladder can’t stand it anymore.

I spoke to Adam last night about my idea for the chart, and he agrees, as it will only take seconds, that going forward, it is a good idea. So today, I have made my first entries. We decided that just doing it once a day, is all that is required, just enough to give a noted point. I have, though, changed my mind about the point in the day that I am going to do this. Yesterday, I thought that the point in the morning when I take my meds might be best, but when I take my meds, they include all my inhalers and they are going to give a slightly warped result. So, I have plumped for midday. It will fit well with everything that I do online, and isn’t going to bit into anything, and shouldn’t be affected by my drugs.


Please read my blog from 2 years ago today – 26/02/2014 – Don’t talk to me

I know this is going to sound contrived but it’s not, I still didn’t quite manage that one job I had lined up for yesterday, a shower. As all to often happens the day moved on and suddenly it was too late, too late because there wasn’t enough time left for my hair to dry before I once again had to put my head……





Charting progress

We all know what it is like when you get a silly idea into your head, and you just can’t shift it. I had one of those about a year ago. and it landed up with my purchasing an oxygen level monitor. I had it in my head, that my levels were dangerously low, and even worse, that every night, I was receiving increasing levels of brain damage. It always felt as though the change from vertical to horizontal, was making my breathing so much more difficult. At the time, I was waiting for an appointment at the chest clinic and the appointment, wasn’t come around quickly enough. As it turned out, firstly, the monitor didn’t actually arrive until a couple of days before the appointment, and secondly, the consultant told me that readings of 91% didn’t mean I was about to die, it could fall right into the 70’s and I would still live. I wouldn’t be energetic, but I’d live. Once I had had my mind put at rest, by the doctor, not the monitor, I put it to one side, grabbing it occasionally, but in the main, I forgot about it.

It actually feels like a long time since I last just sat here doing nothing, but with my oxygen monitor on. I used to do it occasionally, more because my eye was caught by it sitting beside my keyboard, than any other reason. In some ways, I probably should have used it more often and built a clear chart, that would make finding the abnormal easier, but I didn’t. So when over the last few days, when my abdomen has been creating pressure levels off my normal scale, I thought that I knew my oxygen levels would be low, but I didn’t have that much-needed chart, to be sure. I was getting reading from their highest at spikes of 93% right down to 86%, and one dip falling at 84%. All figures that I have seen before, just as I have seen all my differing heart rates, but I don’t remember a single one, with any certainty. It has made me realise, that although I have this tool, plus a few others, I have totally missed the opportunity, to build a picture of just what my lungs and heart are doing, or not doing.

When last summer I had a bout of pneumonia, I know that Adam was worried sick. I am quite sure that he was more worried about me, than I was, as he even took a week off work, as he wouldn’t or couldn’t leave me alone. The other day, Adam was looking for something in the coffee table draw, as he was scrabbling around in it’s overloaded contents, I spotted the instruction leaflets for my oxygen monitor. I thought he had thrown it away, after reading it. Clearly, he was still holding onto it, just in case, he has to put it on my hand and read the results, and clearly, it’s something that still worries him. I did think once before of keeping a chart just out of interest, but now I am wondering if the time has come, that not just for my curiosity, but for Adams future sanity, that such a chart, might just be a really simple and effective answer. I know from experience, especially from that dose of pneumonia, that I can tell him a million times, I’m fine, if his eyes can’t see that, he won’t settle. This might just be a way of giving him, some peace, and if adding on ten seconds to my morning meds routine, would do that alone, well it’s has to be worth it.

I think we, the chronically ill, often forget about what our partners see and what is going on in their heads. As I said, saying “I’m fine”, when “fine” is the one thing we never are, doesn’t mean anything to them. I have sought frequently for a way of convincing Adam, that I’m not going to keel over dead, in those five minutes it takes for him to go to the loo. It is one of my almost daily frustrations, especially at lunchtime, when he phones because the weather is too bad, for him to walk down the hill, to the house. Quite often our entire two-minute phone call is spent with me telling him, that I’m fine and trying to find a nice way of saying, I don’t need him to come home. There have also been numerous occasions when stopping him calling the doctor, has been just as hard. I have never really thought about it in depth, but that chart, might just in the future, be my answer. It also, might be the way of showing me, the pigheaded, “I’m never ill”, obstinate, single-minded, me, that, I actually do need to see a doctor, and now.

There is one fact that I can’t ignore and that is, that my health is getting worse, I’ve tried, trust me, I’ve tried. But it’s that very attitude, that has got me this far, but it is now the attitude, that makes Adams life harder. He knows all too well, that my left leg could be hanging off, with no more than a thread keeping it connected, and I would be asking him to fetch me a plaster. It works for me, but not for him. I have seen the worry on his face when I’m not doing too well, but it’s just my way to brush it off, as it’s my health and my problem. I guess that I had missed one important change, it’s no longer just my health, like everything else in my life, it’s now Adams as well. What I mean by that is. that I am now able to do less and less for myself, I have openly told Adam that I need help and why. He now monitors so much that I do and has taken over the rest of it, but I haven’t opened up a way for him to monitor just how well I am, other than to look at me. This would give him that opening, a way to be sure and to put his mind at rest, that nothing more serious is going on, that I’m keeping from him. After all, he doesn’t have x-ray vision.


Please read my blog from 2 years ago today – 25/02/2014 – I just don’t do

I really have to push myself today as I need a shower. I needed it yesterday as well but I just couldn’t find the strength inside me to get off my backside and sit in a small cubical. So OK it isn’t as simple as that, the big problem is the overall effort it takes and that horrid sensation of pin sharp water digging…..