Monthly Archives: May 2013

Differences change

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I am having fun this morning with a new keyboard, I had to buy one as the the space bar was either sticking or not working at all. As you can imagine there is no worse key to have such a problem with, it was totally my own fault that I had killed the old one, it was a victim of my health. Living in the same place day in day out, including eating my meals sat in this very spot, it is almost impossible for food to not fall on the keyboard. So I searched on Ebay and I found there were loads from different sellers all for around £5 including P&P, so I bought one for the sake of my sanity. I was always under the impression that QWERTY keyboards were all meant to be the same, so I went ahead and bought one. It turns out I was wrong about the QWERTY thing, there are some differences and they are small and annoying! I have touch typed for years, the only time I had problems in the past was when I couldn’t use my left hand, but as it returned I still had issues for a long time because I wasn’t sure where my hand was exactly, lack of nerve sensations often has this effect. I do still have some problems depending on how I feel on the day, when I’m not at my best then I start again loosing exact placements of my fingers, so a lot of deleting goes on. Yesterday the new keyboard arrived and I unpacked it, seeing no difference I unplugged the old one and set up the new one, a 5 second job. It wasn’t until I was typing beyond two or three word answers on twitter, that I suddenly discovered that a couple of keys had changed places! The back space key is now smaller, down to a normal key size rather than a bar key size, and they have add in on that level the hash key. I have lost count of the number of hash tags that have appeared in front of my eyes, I guess it will take just a few days for me to settle this into my mind but until then the air around me may be just a little blue. Silly things like this bug everyone but when you have any condition that effects your mind, well small things often matter more than you can imagine.

As arranged Jake came round to collect his cymbal and spent the majority of the hour he was here talking about his drum kit, not just for my sanity but for his as well, I really hope that he finds a job soon! I don’t think that he really knew how hard it is out there right now for someone in their 40’s to find a job, especially when he has it in his head to change career as well. I guess in someways that I was luck to have been made redundant after I was already housebound, as to be honest finding a new position in your 50’s is even harder. I am also lucky to be housebound as it means I received without any battle the full disability payments. The money isn’t fantastic but it is enough to manage on, at least as long as the interest rates stays as they are, I don’t know how well things would tick over if the mortgage suddenly went up! One of the issues that everyone has once they have a chronic illness is money, I was lucky in having a good company who adjusted my work so that I could continue to bring in a good living, but to many companies just couldn’t care less, seeing it totally as not their problem. Governments can make as many rules about employment as they like, there are always ways round them, believe me I know that one all to well, it was all to often my job to find reasons and ways to get rid of unwanted staff legally. Finances are an issue so huge that I haven’t tackled it in this blog at all really, well they rules and available help continually change in this country and I am totally clueless to the laws in other countries. From what I have learned though, I am so grateful to have been born in Britain. What we get isn’t great but compared to other places around the world, well we are very very lucky!

The last couple of days have been like all the rest in the last seven or so, a daytime spent wishing I was asleep as then I wouldn’t have to fight to stay awake enough to complete my list of todo’s. Spending your life wishing to be awake seems to be my eternal problem, I say eternal but it has only been this bad in the last 5 months or so. I really can’t remember a day now where I haven’t been tired all day long, the only relief being to actually be asleep. I used to note daily the pain levels that I have, where that pain is and what it is doing, but sleep has over taken that. I actually think last night when I stood to a searing spasm down my spine and into my legs, must be the worst I have had for days, but then again I can’t be sure. Pain has become one of those things that is always there and only when I analyse it do I really pay enough attention to it. A few months ago it was my over riding issue, day in day out, I don’t actually think that it has lessened in any way, it has simply slid down on my list of things that I wish removed the most. Right now I have pain in my legs, my chest and backside, but over all is this desire to just sleep.

I have been thinking about what the doctor said about my chest the other day, he said that the sensation I now have through out my rib cage of it being tight and under some sort of pressure, as a mechanical problem with the intercostal muscles. It isn’t like the MS hug that I have documented before, that is far more painful, this is more of a discomfort, but what he said didn’t at first make sense on one of the issues connected to it. As you know I have continually said that it feels as thought something is pushing outwards in my lower ribs, I could only compare it to when I was pregnant and the baby would get caught there until I pushed it away from them. What I am wondering is if the muscles have tightened and then freezes in that position, when I lean forwards slightly could the lower ribs actually be pushing into my stomach, guts and so on. If they were working normally I would expect them to flex to permit that position, but with them locked and fixed, I then get the feeling of pressure. It is like many things that when your body works normally you pay no attention, so I don’t know if I have this correct, as it is over a year since my ribs managed one full day of acting normally, I simply can’t remember, but can you help with that question at all?

It is so stupid the way we totally ignore our bodies until they do something we don’t expect. What is normal, how have we been breathing, walking, sleeping or a million of other things that we do from birth onwards? None of us can actually answer any of those questions because we don’t pay attention! We don’t pay attention at all until it does something to the extreme, then and only then do we notice, but if it continues at the extreme for a long period of time that becomes the normal and our true reference is gone! How I long for the ‘Star Trek’ solution of a scanner that hold all your personal data, that knows exactly what is normal and can spot the change instantly, a twice a year scan would change everything for everybody. Until that day we have to rely on what is probably the most inaccurate recording system we have, our brains. I so wish that I had somewhere just a base line that I could really compare anything to.

Where your partner stands

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Today started with an unexpected bonus, Adam had read my blog from yesterday and without saying anything made a rather sleepy and squinted eyed journey across the living room to give me a kiss. He wanted to appologise for the snipping and impatience. I didn’t write it to get such a reaction, I wrote because I wanted to show what can happen so easily when one person in a relationship lives such an opposite life from the other half. It didn’t occur until this morning that Adam and others would interpret some of what I write, as being directed totally at him, in fact it is very much the opposite. All to often I find that I either leave things out, or adjust them before writing so that I don’t upset or worry him unnecessarily. It is a hard balance to get right, often yes I do put things in here rather than talk about them, constantly talking about how you feel is a recipe to incredibly dull conversation as I said yesterday, so writing it conveys the message well and in a way that means he has all the detail and time to think it through without flying into a panic. Adam is a pessimist and there is no way of avoiding him going straight to worst case scenario, but if I am asleep, which I most often am when he reads, he then has all the details there to read through all there is to know, avoiding a lot of the time him deciding that my death is just hours away.

It can be really hard to know how much to say to those you love about your health, I know many would say that you have to share all of the information, they are your partner and have a right to know, but do they really? I suppose partly because of my personal history of spending most of my life unsupported by parents or partner, I have developed into dealing with my health by myself. Through most of my life I haven’t had people who I could or would have mentioned any of it to, I would simply have gone to the doctors or even a hospital appointment by myself and unannounced. Depending on the outcome I may or may not have then spoken about it. So now being with a man who feels he should know every detail, is still a bit odd to me. I don’t hide or hold back anything intentionally or for any reason other than it just doesn’t occur to me to say anything. If you then add on my wonderful memory that can forget anything and everything, well I’m sure you can see the problem.

What you say and what you don’t say, can all to often be the wrong thing for no other reason than as I said your history. I guess only those who met as children and have been together ever since stand the slightest chance of know exactly how and what to say. Illness brings up so many issues that it is almost impossible to be able to get it right all the time, but we try and there is no more than that we can do. I suppose that having a chronic illness is like many other things in life, it is hard to know if it is easier to deal with by yourself or if it is easier to have someone to share the burden with. It is also one of those questions that is impossible to really answer, no one can really experience both sides of that question. There is no doubt in my mind that once you are housebound a partner or spouse is the greatest gift there is as they are your world. But having said that, well there are always times you would rather they weren’t there, somethings are so embracing that being alone would be preferable at those points. The guilt factor is always unavoidable as well, no matter how often they tell you not to feel guilty, it is unavoidable. Life is never a straight forward equation with one clear answer, I suppose that is part of the fun of it, you never know what way anything will eventually play out.

Love is clearly the greatest pleasure but it can also be the greatest burden. When you are in love it is all to easy to be hurt by those you love, there is so much of life that is out of anyone’s control and so much that can do nothing else but hurt. Illness has to be the cruelest, as it takes almost everything from both of you and gives back very little, but what it does give back is cruller still, it brings you closer together and the more you love, the more it will hurts.

A separation from sparkle

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The long awaited cymbal has at last arrived late yesterday, so my day is laid out now to be a busy one. I have the shopping arriving this morning and once I have phoned Jake he will be here, probably for about an hour, although I am thinking now that it might be a better idea to ask him to come tomorrow to collect his toy.

I’m not totally sure why but I have noticed in the last few months that Adam and I are snipping at each other more and more. We always have, but the playful edge is there somewhat less than normal. I can only guess at the reason but it started when I started to need to go to bed earlier than before, clearly when he comes home from work between 5:30 and 6:30 and I am in bed before 9 this means we have a very limited amount of time in the same place. I have tried many time now to sleep longer in the afternoon so that I might have a chance of being awake through the evening, on Monday I stayed in bed for nearly an 3hrs, timing my sleep so that I would be awake at 6pm, Adam actually came home at 5:30 but even getting up at that time, didn’t stop going to bed at 8:30. There seems to be no combination of length or timing of my siesta that changes anything at all about my eventual collapse into sleep. Being ill all the time puts a great deal of strain on any and all relationships, I love him deeply but when things are more active with my health, I find it hard to be as attentive in my listening and even to be interested in some of what he says. It isn’t that I not interested, but constant pain, questioning of what is happening and why, means there are at times little space for chit chat, add in my concentration problems and virtual endless exhaustion, there is a row of small powder kegs waiting to explode in turn. Just as relationships take two, conversation does as well, so with me distracted and short tempered, it isn’t really that surprising he in turn is snipping at me and short in his ability to listen patiently waiting for to stutter my way through the few things I do have to say.

Most conversations between us now seem to center around things in the news or TV shows, it’s hard for me to join in with his chatter about those he works with, or the place that he works as I have no reference on which to be able to really join in. The longer the outside world has slipped into another dimension, the harder it is to talk about what happens in it. It isn’t that I am not interested but it is somewhere that no longer feels real, like it is a long ago watched TV program. All the references that we require to feel part of the world are no longer there, I have lost the visions of people and how the behave, the things you hear and see around you everywhere, not just the people but the colours, the noises and energy that grows inside as you take it all in. All of that has been replaced by a carefully managed environment that I can live in without distress from the disorder, the sudden and the unexpected, without the clatter and chatter, the cars and other vehicle, or the shocks and surprises that all cause me to be unable to cope. When you live within four walls, without human contact of friends and work colleges, not seeing for real what was once the instigators of the things everyone talks about, well what is really left for me to speak of, what I right here, my health. I can’t spend every evening going over all those aches and pains, the details that I write here, if I did talk incessantly of nothing else, then the snipes and impatience would grow, not lessen.

Some people make a comparison between housebound and being in jail, a comparison that isn’t accurate, but has it points of connection. In someway prisoners actually have an easier time than I do, as they have wide and varied people to interact with, and there for a rich source of things to fill their minds and conversations with their friends and families. I am closer to solitary confinement than most of them will ever get, but I don’t feel imprisoned by being housebound at all, if anything I am imprisoned by my health. If tomorrow we suddenly had the money to move house, to buy an electric chair and everything was adjusted to give me freedom, I would be no better off. All the freedom in the world would not change my life as I would still be housebound, unable to go out, as it isn’t the walls or stairs that keep me here, it is my health.

I have so often said that housebound is no worse than earthbound and I still full heatedly agree with it, although what I have just written may not make it sound that way. What I have lost is a minor inconvenience to me and a frustration to Adam, I apologise for not having the sparkle in my words that I once had, but I have learned so much from everything that my health has reveled in my lifetime, that to me a sometimes dull subjects in my conversation is a really minor point.

Doctors and possibilities

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The phone call has been made, so there is no going back now, I am expecting the Doctor here sometime after 1:30pm, unless of course he phones me instead. I still would rather see him as the problems are growing and there has been for me no resolution to the all the tests that found nothing. There may have been nothing inside my gut, but something still is making them permanently uncomfortable with extended period of pain, all of which I could do without, but more than that, there has to be some reason behind it. I have never heard of a body suddenly developing something all on it’s own and continuing for over a year, with there being no reason. Between my lungs recent games and my intestines antics, well my torso has become one big disaster area. I actually woke in the middle of the night not because I couldn’t breath, but I think it was the fact that my left lung had decided to be totally solid and I was on my left side. How or why I was on my side I have no idea, I never sleep on my side so it was incredibly unusual that that was were I was lying. I can only guess I had rolled in an attempt to make myself more comfortable, I managed the opposite. I slept somewhat fitfully from then on, again not normal, coma is my normal state through out all my lengthy sleeping hours, so I will be pleased to see the doctor today and to talk it all through with him, hopefully he will spot a pattern or something that the hospital missed and will also be able to have a reason for my lungs reluctance to act like sponges and more like coral.

It has always been amusing to me the way that when we are going to see a doctor, to discus the fact we are ill, that all women immediately spend some times making themselves look as good as possible. We tidy our hair and add makeup, therefore covering the look of being ill, when in fact if there is one thing we actually want our doctor to see, if not anyone else, is just how ill we are. I suppose it is the same way we clean our teeth with a little more vigor for the couple of days before going to the dentist, as if it will actually make any difference. We try so hard to show an image to the world of a person who actually doesn’t exist, forgetting that some people actually really need to see the original. I am still clearly guilty of this, despite the fact I am alone in the house and my Doctor knows me well, here I am still concerned that the image of me, remains complete. I suppose that is why they say they can see people who are depressed, their lack of self grooming means they are in the spiral of “I don’t care”. My normal daily appearance now has more to do with “I don’t have the energy”, easy to confuse I know but they are very different.

I was beginning to think that I wasn’t going to get this finished today as I have had my normal call from the Jake, taking around an hour with little to actually say other than more updates to the size of what may well eventually be the biggest drum kit in history. I do love him, as he is probably the closed thing I have to a brother, even though there are two in Aberdeen who were born as such, Jake replaced them both around about 20 years ago now. I am at this very minute waiting for yet another cymbal to arrive in the post for him, so I will be seeing him later this week for sure. Just after I ended the call as my arm was ceasing up, it often happens and I have for years now sort of avoided the phone for many reasons from speech, brain freeze and so on, but also just simply because holding a phone is a real pain. My phones can all be used hands free, but it always sounds so rude to me, as thought you don’t actually have the time or the interest in the person to do on simple thing listen to them. If the call hadn’t held me up for long enough, I then had to work on getting my arm back to normal, I have found that often just damping a cloth in cold water and running it over my arm eases the muscles back to a more normal state.

I was actually still in the bathroom when the phone rang again, this time it was my doctor. To my disappointment he isn’t coming to see me, we did talk though for a reasonable length of time and I managed to go through the things I listed earlier, well almost all as once again my memory failed to come up with a couple of them. He is sending a letter to the local hospital for an urgent appointment at the chest clinic, yes another clinic, but they are at least the right people this time. The doctor thinks that unfortunately because it all started at the lower end of my rib cage, his first referral to the Gastro department was probably wrong. So I just have to wait now for that letter and go through all the hassle of more days waiting for transport to and from the hospital, the very thing that had stopped me for so long from actually speaking to him at all. I don’t have any choice though if I want to know what is wrong I have to go through all of this to find out.

Without seeing me he has said that he thinks that it sounds more mechanical than anything else, which to a point I would agree. Yes the tight pressure sensation could easily be my intercostal muscles, not locking as tightly as I would expect from an MS hug, but the going solid and heavy sensation within my ribcage does feel like a totally separate sensation and clearly within my ribs. I hadn’t thought of this until now, but if my ribs are refusing to move as they should it could be the constriction of my ribs that makes the lung feel solid and unusable. Now that is a real possibility, sometime you need an outsider to put in a new idea for you to start looking at it in a new way. I suppose once the experts in that field have done their test we will have the answers.

The magnifier of symptoms

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Some days have a feel to them, something you can’t put your finger on but you know is there, like one of those mobile itches. You scratch at it feeling satisfied that that is it, then suddenly and repeatedly it reappears a few inches from where you last scratched. Yesterday was one of those days, I kept waiting to find out what it was, but nothing seemed to happen, each hour passed and the itch remained unsatisfied. Adam again was working over time as he had on Saturday, just the 4hrs, but split in to shifts, which alone is enough to make your day feel odd. I remember when I worked in the hotels years ago that split shifts were a true pain in the neck, made worse by the fact that the two hotels I worked in, not at the same time of course, were both in the country. Having two shifts to work with a gap of 3 hours between them, meant you spent those hours in the hotel, all to often you carried on doing some sort of work, through nothing but total boredom. Adams shifts were further apart so he did come home, but it added to that sense that soon my day was going to be cut at an unusual point by being alone.

I had completed everything I do in my day by the time he left home for the first time. It was heading rapidly towards nap time but I had enough time left to sit and yet again challenge myself at Nikakudori. I would recommend it to anyone with time to kill as I have now been playing for about 5 or 6yrs I think, without loosing the desire to play it yet again. Like everyday recently I have been finding sitting a problem, you can move around and change position as much as you like, but all backsides regardless of size, has a limited surface area on which you have available. The constant pressure on my pelvic bones over the years has led to spells like this were the bone itself seems to be centimeters below the surface of the skin,a pain that becoming sharper and sharper over time. Take away all the health issues that any condition brings with it and sitting has to be the worst and most common issue for all of us, yet apparently the hardest one to fix. It was sitting that once again sent me off to bed earlier than I had really intended, even the distraction of the desire to get further than 10 levels, wasn’t enough to keep me here. Faced with a simple choice of sitting with pelvic pain, standing in pain from my legs or lying in bed with my chest feeling as though it wants to explode, I actually favored the final, lying down always holds the gift of sleep. This seems to be my life right now, a choice between three evils and sleep being the only answer to all of them.

When your world closes in and your have little in it to distract you truly everything that happens becomes enlarged and gains importance that before being housebound would have not even really registered in your memory of that day. Even the tinniest things become note worthy and important enough to feel that something has to be done about it. I can’t help wondering if this too would be the case for many of the pains and discomforts that plague our lives. I don’t remember every having prolonged spells of finding it painful to sit, but I sit as much now as I did them, yes on different seats but even then I always used my pressure cushion as protection against pain, I still sat for hours, unable to do little else. This isn’t a new train of thought, I have wondered many times if how I feel is magnified because I have little else to think about day after day. In fact it is a question I ask myself frequently, especially since I started writing about my health daily, is this a good thing or a bad thing to do? My answer to the writing is simple it is clearly a good thing, it gives me the space to empty my thoughts into, the being housebound, well I think it does makes things worse. It’s unavoidable but it is does focus our thought onto what is holding us here, we can do nothing but constantly be aware of every pain, every difficulty and every minute as it passes, sometimes slowly. I would go as far as to actually list housebound as one of my conditions, it is a side issue on the health scale, but it is stands proud among all the psychological issues. I try to be realistic about how I feel, to take out the magnification and to look at how I feel as a person, not just a housebound person. It is impossible to separate them totally but I try and I think it is important for anyone in my position to also do so.

I guess housebound is going to be an eternal itch for me, one that I know is there making things different and worse, but with no way of taking it out of my daily life and with no tablet to remove it’s effects. I can never be sure just how much of an effect it has, because you can never see these things yourself, but personally, yes I am going to list it as a condition all of its own.