I’m ill

All last week Adam was grumpy and rather down, not surprising as he had a rotten cold. I was really dreading catching it, but the days ticked by and as they passed I slowly relaxed and came to the conclusion that I had been lucky and had escaped it. All day yesterday I was fighting with my lungs, there was no comparison between how they were when I woke and how they were when I was sat watching TV last night. The morning was almost normal, just a bit of pain that I kept putting down to the fact I didn’t seem to be able to keep my posture right. In fact, that was how I spent nearly all of the first half of the day, catching myself beginning to crumple and having to pull myself up from my core, over and over and over again. By lunch time I had developed the feeling that my chest had compression bandages around all of it but still the word “cold” didn’t enter my head. Nor did it when I started suddenly drinking gallons of liquid as though it was going out of fashion. By the evening, I couldn’t find any position in which I could sit without incredible pain in the back of my lungs when hunched forward and when sitting back, I simply couldn’t get enough air inside me. I didn’t feel anything that would suggest it, or that it wasn’t just my COPD and PRMS working together. I was totally delighted when bedtime came around, even when I found that the simple vibration caused when just taking a step was enough to have me dreaming about a booster pill. I knew I was a mess and I had had enough for the day.

I woke in the middle of the night, all that fluid that I had been wondering where it had gone, had suddenly decided it wanted to leave. As soon as I pulled myself up I knew I had a headache and clearly had that taste in the back of my throat that said phlegm. I now know it is coming from my lungs, the occasional cough is enough to prove that, but there isn’t any wheezing or anything like that. Once actually on my feet I could feel that ache all over me, on one hand not odd, but somehow different. By the time I woke this morning, all my glands were welcoming me by reminding me of their presence and position. It still doesn’t feel like a cold, but I don’t need any doctor to tell me that I am not well.

I have spent a lot of my life with different lung problems. Firstly, Asthma, which hasn’t bothered me that much since I became housebound. Just the occasional breathlessness when active, if you can call it active. As long as I keep myself warm, well fed and dry, I can keep my other friend bronchitis at bay. Put me in a cold or damp room for just one night and I won’t be able to breath the next day. It is another condition that is on my personal list of chronic conditions, as most winters brought at least one bought, often many more. I, like a lot of other people, found that just having the flu jab, for some reason to keep both bronchitis and colds at bay. Being housebound of course means I can’t attend the doctors to get the annual jab, it also means that I don’t come in contact with sick people as Adam is normally healthy. When I was told that I had COPD and that on top of that my PRMS was doing its damnedest to stop me breathing. I went through a short spell of paranoia about Adam bringing something home. Luckily, he gets the jab due to his work, so I have remained free of any extra lung problems for many years now, but I have always been waiting for it. Being ill on top of a chronic condition isn’t funny, one of the reasons why I fought so hard to stay fit while my body would let me, as when I got ill, I was really ill. When your immune system is busy destroying you, it isn’t that interested in fighting off some bug. Half the time it just ignored it and I have managed to land up in hospital three times with bronchitis that changed into pneumonia. Trust me that’s a condition no one wants to have.

No one ever wants to be sick, but when you are living with other lifelong conditions you actually begin to fear it. The idea of what having a bout of bronchitis on top of my COPD is something I had avoided thinking about too deeply. I do worry about the fact that I spend more than half my life flat on my back, is the perfect position for fluids to congregate in my lungs and to do damage. Like many other things, you never have the correct discussions with doctors when you have them to hand. I never even thought about asking what do I do if I get a cold or have bronchitis? Should I call and get help straight away, or do I wait to see what happens? They aren’t a question I would need to ask if my COPD was further developed than it is, I would have already called a doctor, but I no one can stop my PRMS from constricting my lungs. I really didn’t need an example that should have been in yesterday’s post, in fact, it’s rather ironic this should appear today. I have always said that there should be well-written guides for everyone when they are first diagnosed. Within that literature, I would insist there were flow charts, ones that take away all those doubts and questions as the would be clear if this happens, do that if that, well do this. I am totally convinced that a lot of people land up going through things that could have been avoided if they just had a guide to help them.

The plan for today is to have my shower this afternoon, the way I feel at this second, well I can’t see that happening. What I can see with total clarity, is as soon as I can, I will be going to bed.

Read my blog from 2 years ago today – 12/06/13 – NHS roulette

I so love the British weather, last week it was out to kill me and this, well it’s returned to perfect conditions again. I wish there was somewhere that never got warmer than here, or colder either, well apart from a few days of snow per year, I would be so happy to live there. It seems to be a large part of being human that we are never totally happy with……

Getting ready

I slept last night, not one disturbance of any sort, just as always happens for the first two nights after I have cleared my insides. I was worried at around 8pm that it wasn’t going to happen as I had thrown my routine out the window yesterday afternoon, for two very good reasons. The first was simple, I was shattered so I moved my nap from 3pm to 2pm, but even though I knew I could have slept a couple of hours, I restricted it to an hour and half, for the second reason. I decided to take the plunge and to get my overly grey hair, back to being purple as I am expecting visitors over the Easter weekend. I have been putting it off over and over again as it had turned into my head from a simple quick job, into a nightmare of a scale that was just out of this universe. I know it’s silly, I have been dying my hair since I was 11, when I managed whilst my parents were on holiday and I was staying with my aunt, it sneakily dye my hair a deep chocolate brown. Well when I say my hair, I also managed to dye the white cotton mats that were sat on the dressing table and some dots on the carpet, while managing not to dye a large disc at the back of my head, to say the least, I was in trouble. Luckily my aunt saw the funny side and sorted my hair out for me, but my parents didn’t find it funny at all as they hated women dying their hair and I wasn’t even a woman, I was just a stupid child. Yesterday, well it was a better result, but I did have a lot of cleaning up to do, especially all around my face, in my desperation to ensure that this time the whispy bits I missed the last time, were going actually going to match the rest, I kind of got carried away. Luckily, I had remembered to use my trick of covering my face and ears in a thick layer of moisturiser before I started, that way I have the time to clean up, before it dyed my skin. These days I have one other prep action to take, I take a booster pill and wait for it to kick in before I even start, when your arms ache just sitting typing, you haven’t the slightest chance of spending half an hour with them above your head without causing pain.

Every simple task just grows, a half hour prediction on a box and the declaration of how easy it is, has to be taken with a pinch of salt then doubled, before you even think about the cleaning up and showering, or the time it just takes to recover enough to be able to get on with the rest of your day. It takes so long and has so many pitfalls that yes, as time goes on, every single task you once took in your stride turns into a monster looming over you. Especially when you have already tried the alternatives, help from amateurs who don’t know what they are doing, or professionals who cost a fortune. The worst thing is that it also takes away that feeling you used to get when you would proudly stand in front of the mirror afterwards admiring your work, now, I give it a quick look, pleased to see no grey but too tired to care about letting the light catch it or to run my fingers through it and watching as the light plays through the strands, lifting the colour to new levels. You would expect that my pride in having actually completed something would be greater, but somehow the pride no longer exists, all I feel is a relief that it’s over and done with. I hate feeling that way, I was a person who took pride in everything I did, it didn’t matter if it was just cleaning something, I would stand and look at it with pride, move around it to see the shine and check it again and again throughout that day, because I could see the full beauty of it, just as it should be in my head forever. When you are too tired to care, too tired to even think about caring, it makes every task somehow flat, without that pride, it is just something that has to be done. Life shouldn’t be like that, but it is just the way it is, yes I have shifted it in some ways to other things and I do praise myself for what I do manage when I feel like managing nothing, but that instant pride, that feeling that I want to look and look again has got lost somewhere along the line. I know some will say that that is because I have no one but Adam to see the things I have done, but that I know isn’t true, as most of the things I took such pride in where things that no one on this planet other than me, would ever know I had even touched.

I was clearly out on my timings for everything I should have been doing, it was nearly 5pm before I started going through the tweets for the previous 12 hours, counting the retweets for the quotes and PSMyWords, a full hour late. It was 6 pm before I remembered I hadn’t had my soup after my nap and I headed to the kitchen to heat it up, something I realised later was totally the wrong thing to have done, wrong because I was then full and sitting on the settee. Posture is something I know without a doubt does make a difference when it comes to how I react to food, sitting here at my PC means I am reasonably upright, something that isn’t really possible on the settee. To make things worse, I decided to treat myself with some coconut rum and milk, something that is filling on its own so I was over full and crushing it all by being slumped. To breath with ease on the settee, I either have to sit forward, hunched over my knees, that way for some reason the pain in my diaphragm seems to lessen at the front, but it slowly builds in my back, so then I have to move back against the cushions with my hand behind me, pushing my ribcage forwards. It lasts for a few minutes then forward I have to go again and so the whole evening is spent, on the move most of the time, but constantly sat where I am without ever being totally upright. Normally on the evening after I have cleared my bowels, is usually more comfortable but my mistake of eating late, left me in as much discomfort as I had been in the night before. I headed to bed with apprehension, sitting on the edge of the mattress undressing them putting in my earplugs, all I could feel was my diaphragm. I don’t know why I did it, but I suddenly put my arms above my head with my palms facing the ceiling and pushed them as far from me as I could. I am telling you now it is something I will never do again, the pain was totally blinding and how I didn’t actually make a noise loud enough to bring Adam running I don’t know, it was like someone had shoved several red hot pokers into my lungs and was twisting them, whilst crushing my ribs just for the fun of it. It did make my cramped up arms feel better, which is why I think I tried it, but even that didn’t make it worth it, as what replaced it was far worse. It something I know from experience that what you gain in one part of you, is normally counterbalanced by something else. Almost every trick there is for breaking spasms or relieving aching muscles will make you pay in some other way, but that is one thing that I will never do again. I sat there for a few minutes as it subsided and returned to the exact pain I had before I tried it. I was so in need of a good nights sleep so like I have done many times before I took a booster before I lay down.

I woke this morning as close to rested as I ever feel and on my way to being organised for Teressa and John to be here on both Thursday and Sunday. I haven’t seen my daughter and son in law since Christmas so we will have our usual day of catch up and with them having both been on a two week flit around part of Europe and also a week in Goa for a wedding, I guess this time we will have a lot to talk about. I still find it odd that all I have to do when someone is coming to visit, is to dye my hair and think about a little makeup, when it used to involve a full spring clean of anywhere they might go, along with hours of cooking. I really do live in a different world these days, in some ways I now do see that I used to go OTT but you don’t know how I wish I could be OTT right now.

Read my blog from 2 years ago today – 1/04/13 – There is a duck in the room. > http://bit.ly/XA9LpI

My legs are bad today, Adam noticed it on Friday as he asked if I was OK as I seemed to be more wobbly, his polite way of describing what feels to me as a good imitation of a duck. I am often like that late in the evening. I just noticed what I wrote there, “late in the evening”, otherwise known as just after 7:30pm. lol Anyway as I get tireder and towards my…..


I woke this morning from a half dream, pulling at first at my duvet cover, trying in my muddled state to separate the sleeve of the top I wasn’t wearing from the table in my dream. I woke because this is so similar to dozens of dreams I have had before and muddled or not I recognised it, waking enough to stop myself and pull my arms back under the cover, I wish I hadn’t. When I next woke it was because I had just dreamt that somehow I had peeled a complete fine layer of my little finger nail and I was trying to give it to someone, but I had dropped it, once more I was picking at the duvet cover. It wasn’t until I had eating my breakfast that I realised that I had ripped my little finger nail on my left hand at it’s base and nearly half way into the nail. My much loved long nails, now has a problem nail, repaired with super glue, but until it grows out, it will remain a problem. I had managed it, even in my sleep, because it has grown in a really odd shape, thanks to my typing, it has this twisted shape, where I have constantly put it under pressure, especially when copy pasting, something I do a lot, from twitter to spreadsheets and back. I was warned when I went on the morphine that they often produce vivid and worrying dreams, for the first two years there were none, then suddenly at the start of year three, these stupid dreams before the alarm goes off started, not every morning, just occasionally, but I am so used to them now as they always involve something that requires me to be picking something up, which always turns out to be glued to something that I have to separate it from and the duvet is always the victim. I think it is the fact that they causes a physical action and aren’t just in my head is the part that I find most worrying, who know what I could actually land up doing.

Yesterday had passed pretty much as it had started, until I had my nap, at that point I decided to take another booster and try again just to get a little peace. I know that most of what I had gone through since Thursday is down to the kick back from my visit to the Dental hospital, this is all down to going out of the house and being stretched to my limits. I remember when I was chatting to the consultant and when I told him that going out was going to knock me for six for several days, he looked shocked, it was then that I felt that he started to take more interest in what I was saying about alternatives and ways things could be improved. I honestly don’t think that any doctor who hasn’t had someone with a condition like MS in their care, has the slightest idea of how their everyday requests, are our everyday nightmares. Most of Sunday was just as I had written about Saturday, sometimes my life is just too predictable, mind you pain and exhaustion are very much the same regardless of the day or reason. The combination of the lift in morphine and spending some time lying down seemed to make a difference, at least my gut had shut up and sitting wasn’t a constant twisting a shifting process, just trying to find the impossible comfort. Right through until about 7pm, things felt more normal and I was grateful for just getting a break. When I shifted myself to the settee so that I could see and not just hear the TV, the way most of my so called viewing is done, I once again found myself in pain. When things are frantic like they are just now, I should have been prepared for it to get worse again, the settee is just that little bit lower and to reach the table I have to hunch forward, something I do a lot, as it’s actually easier to breath in that positions, but it puts pressure on my internal bits and they don’t like it.

Settees are another thing that should really go on that list of thing we buy for all the wrong reasons, ours admittedly needs some work done on it, the type of work that if I were still working would have been done years ago, but when it does get done there is an extra item I now want changed, the hight, I want it raised by two inches. Even one inch would do really but a lift in hight would mean I could once more sit on it without being crunched, regardless of my position. I have like most of us I suppose noted that all the seats that older people choose to sit on are always higher than the modern shapes, I always thought that it was purely down to pain in their hips and knees when it came to standing up again. Now I understand that there is much more too it, yes joints are an issue to them, but I am sure that part of if is their muscles wasting, I can no longer get off the floor without an array of things to hold onto, so I know all about that. The settee has the same issues as the floor, even though it is considerably higher, I still struggle all to often to find the strength needed, it is no longer a fluid and elegant process in any way, shape or form.

That last sentence set me thinking, I can’t actually think of the last thing I did that was elegant, probably it was some fluid turn that I made in my wheelchair, I had become quite nifty in my use of it, but that’s how long ago it is. Elegance and PRMS, in fact any form of MS, don’t go together. I always made a point though that I didn’t let myself look like an invalid, I wore all the mad clothing I had worn all my life, tiny mini skirts included, wild hair and perfect make-up. Walking with a stick or sitting in a chair wasn’t the end of my being able to be me. I will take that back just ever so slightly, I did slip badly before I had the chemo, but everything about me had slipped at the point, in fact I didn’t know who I was any longer as I was a total mess. Post chemo and I picked myself up and returned to being me and getting that second chance meant I was going to do it all with style, if not elegance. I guess we all have our own look and style but I was lucking in one way, I had always loved over the knee boots, I can hear the question marks popping, the boots I loved where black sued and with the laces at the back, perfect for life in a wheelchair. I never understood until I was myself in a chair why so many covered their legs with a blanket, I thought it was to cover their withered legs, but I soon found that it is because summer of winter, your legs get cold. When you aren’t walking and your not using your muscles, legs get cold, add in the air being thrown at them flat on as you move and they chill further. High boots were the answer, just with tights in the summer and socks in the winter, I always wore flat heeled shoes, being taller than Adam I preferred not to make myself even taller, so getting in and out of the chair wasn’t hindered either. Knee high black suede boots, black tights, black knitted mini dress and a black ankle length coat, made up what I though was an elegant look, even when sat in a chair. Yes, that was my last elegant act.

When our bodies stop us living the way we had planned, I think it is essential that we at least feel good about how we look, back then I was slim so the mini lengths might not be so appealing these days and pyjamas are my every day dress, but I still wear my favourite colour every day and the splash of my waist length purple hair, just helps to make me smile. Elegant in action, I may not be, in fact floundering, wobbly, stagger lurches are closer when it comes to my actions, but if you have those touches of who you once were, they make all the difference.


Please read my blog from 2 years ago today – 10/11/12 – Talking shorthand

Although I won’t be attending I have received the invitation to Teressa’s wedding and it shows one of the few things that her Father and I ever had in common, the invitation is a card version of the Tardis. She may have spent the majority of her life abroad but her love of Dr. Who and all other……