Priorities

It is now two whole pain filled days without my booster pills, but the good news is that I haven’t had a single vivid dream, now I know for sure the reason for them, I can factor it in along with all the other choices that I have to make when I’m in pain. Last night I was so tempted to take one, but I really had to have those free hour and two nights sleep to be sure, it does leave me with a problem though. I have had the Morphin booster pills and have been using now for over 18 months, prior to my stepping up the number I took in each day due to the pain being caused by my stomach, I never had the slightest problem with dreams, so I am reasonably sure it has to do with the number of them I take in any 12 or 24 hour period. This, of course, means that I have more testing to do, but at least I have the reason for them. Life is always so easy with hindsight, but it was in January that I suddenly started having broken nights and dream, I never had a bad nights sleep prior to that so it couldn’t be more black and white if it tried. Hindsight, also has another thing that comes with it, feeling stupid that you didn’t make the connection sooner. I can’t believe that I was so stupid or that I spent so many broken nights sitting in the kitchen having a cigarette trying to work out what was wrong with me, or why I just couldn’t shut my brain up. All those nights and the cure was so simple, it was those damned tablets. I freely admit that I have been reaching for them more and more, not just because the pain has been worse than before, but I had discovered the one thing I feared that I would get fuzzy headed, didn’t happen. It seemed so simple when the pain levels got beyond what I could bear for just a few minutes, I had developed the attitude of why put up with it when one tablet changed everything. Now I am going to have to put up with more pain and just see if it will settle by itself before taking anything for it, but that way when it is really bad, I can take them without losing sleep.

There is something odd about sitting somewhere in pain and doing just what you know you have to, put up with it. I’ve been doing it for years, but just having those few weeks of freedom to remove it to a livable level, well they did have their up points, but I discovered yesterday that they were also covering up other things. Pain control works on your whole body, not just the area where you have pain and all those so-called targeted relief products, well they aren’t, that is just marketing, a fact that I saw confirmed on TV the other day. I never knew how to prove it until now, but if you look at the back of the pack, you will find a license number that they are produced under. Every drug that shares the same number has to identical, no matter what the marketing man calls it, be it the cheapest or the most expensive, the license number gives away the truth. So save yourself a fortune and buy the cheapest the result is identical anything else is just placebo. I have always wondered what my drugs might hide and what is really happening inside me, but the one thing I never expected was to find things on the outside. I have heard people say that they “were in so much pain that even their hair hurt”, something that I didn’t only think was an odd thing to say, but actually impossible, I have discovered that in some ways it’s not. All I did was run my fingers through my hair and over the scalp at the front to move it out of my eyes, to my total shock it hurt. OK, it wasn’t my hair but it wasn’t my entire scalp either, it felt like it was every few hair follicles, my disbelief was such that I had to do it again and sure enough my “hair” was hurting. I have been aware of heightened sensations over my entire head from time to time, but clearly the higher pain relief has also been dampening sensations caused by my nerves as well. Putting on my face cream has shown me that my forehead is losing sensation other than numbness which is now the reaction to touching it, to the extent that I can draw a finger across it produces a numb line, which slowly returning to normal over the next few minutes. The rest of my face keeps breaking out in patches of tingling and itching all that I knew were there, but not taking the booster in the last two days has shown me that it is far more active than I thought and it’s not just sensations over my head, but across the whole of my body. It is almost as thought the sudden removal of the extra Morphine has been greeted with a party of reactions from almost every nerve I have, from spasms to irritating itches, my skin and body has been going mad. Not that I am going to try it, but I can’t help wondering what I would feel, if I stopped taking all my meds, as in an odd way, I don’t think I know the half of it.

Bodies are strange things and I know mine is stranger than most, but I would never have believed that those odd sensation and pains I was living with in my 20’s, could ever get to the point they are now and I am only experiencing a muted version. I hate to think what the lives of those people with my condition collections were like in the past or are like in countries where either you buy your drugs or you put up with it. I suspect that suicide numbers were and are raised for that very reason as no matter how strong people think I am or how much I believe I can put up with, I don’t think I would be here either. Personally, I won’t have anything to do with illegal drugs but, in this case, well I can fully understand why some might turn to them. Like so much in life, it is down to personal choice, no one should have to run the risk of being criminalised for simply finding something that allows them to live a more normal life. There are right now countries in this world that if I arrived there with just the legal drugs I take daily because they are prescribed and I need them and even thought I had just what I need for my stay, I would be seen as a drug runner and be put in jail, yet without them, I would have no life. Every country has the right to its own laws, just as every person has to live within them, like it or not, for some of us we have the choice to go there or not, but what do those who are born there do when every door is closed to them, my heart goes out to them. As I said the other day on Twitter, “Even though we live with #chronicillness, just remember one thing – It could be a lot worse”, it really could be.

They say they are working on a cure, it will be a cure that will probably be given to those who can afford it first. In an odd way, it will be given to the people who actually need it the least, we have options, it is those without option who need it the most, but will probably be the last to even know that it exists.

Read my blog from 2 years ago today – 28/04/13 – Gaps prove the loss

I wish more than anything that I had a tool that would record my thoughts as I cross over into sleep. I know without any doubt that every night I write in my mind the most beautiful and most profound statements, so far above those I actually write here. Before someone suggests that I take a notepad with me and writing the best of them down, well that would mean……….

It’s a pain

Mothers day, so yes I am on my own. Adam and his sister always go to see their Mum on this day and they always go together as it is a rather long hour and a half on the bus there and back again. They did try this year to get her to drive into Glasgow so they could take her out to lunch, but she wasn’t having it, she wanted her family in her home for the day as she said that all the restaurants would be too busy, understandable on that level. So anyway, he was up at 7:30, dressed and gone without any time to say much other than Goodbye and have a good day” and he will be home in time to say “Goodnight, I love you”.

I have to admit to feeling rather sorry for myself this morning, despite going to the loo yesterday and being as sure as I could be that that was it and I would get a few days peace at last, within hours it was back, well not literally. My stomach was flatter and soft, but all the pain and discomfort I have lived with for months, was all there as though nothing had happened and it is still here this morning. It was when I got up after my nap that I first felt it, there it was the unmistakable feeling of pressure right across the front of me and I was feeling sick again. As the hours past it was getting stronger and stronger, even though the only thing I had eaten since was my lunch, I honestly would have said I had several days of food stored waiting again. I did try several times to press my hands into myself to check over and over to see if it was possible there had been more hiding and it had simply moved but other than the normal strip across the top, I could find nothing behind it that could possibly be causing the pain. I kept telling myself that it was possibly a reaction to being clear, that my guts just needed the chance to readjust and that it would pass, but it is still here this morning and even woke me up with pain low down in my stomach, a place that doesn’t normally hurt until the last couple of hours before relief. I have had pain like this for a couple of hours after having taken too large a dose of laxative, but I didn’t, I have been really careful about that since the last stupid mistake and even that one, didn’t cause pain that lasted right into the next day. Right now, well I would describe it as every inch of my gut is aching with a much more acute, sharp pain at either end of my body. Whatever is happening in there, it has taken another step as there shouldn’t be any pain this morning at all, nor should there have been enough pain to wake me during the night, which it also did.

When I was lying awake in bed waiting for the alarm to sound, I started to think about the appointment that my doctor is making for me to go and see the guys at Gastrology. I am so aware of the issues I have when it comes to talking to people and being able to vocalise my thoughts, those I don’t forget, that I was wondering about doing more than just writing a crib sheet for myself, but actually writing a sort of post for the doctor. I know what it is like when I go to hospital, the whole process is inclined to wipe my brain, part of the reason I am so glad that Adam is always with me, but I know even with him there, that things still don’t get said and I am also very aware of the fact that if you see them more than once, you never actually see the same doctor. I found myself coming up with the idea that it might be an idea for me to just write it all down, being sure that everything is there and without any floweriness around, just keeping it to what is important and what the effects on me are. That way with any luck it will be scanned into my notes and on return visits or if they are discussing it with other doctors, my words are there for them to refer to, rather than what they might or might not personally feel is important. One of the things that I have learned is different doctors all have their own personal trigger words and unless they hear them, they dismiss what appeared around the word they were looking for. I have lost count of the number of times that doctors have asked why I didn’t say something before, when I had, I had just said it in my own style. I am also aware that one of two things also happen once you are living with a chronic condition, firstly they blame it for everything and anything that they can and secondly, once you are on strong painkillers, they forget that point so when I say it hurts, they measure me against the norm as if I wasn’t on Morphine, what if I wasn’t I would be more likely to tell them it’s agony.

It isn’t all their fault, I will take the blame for some of the miss-communications, when you have lived for most of your life with pain, you do become dismissive about it. That doesn’t mean I don’t notice it, or it doesn’t hurt, but it is normal for me, if I had never had pain beyond that of the average person out there and I wasn’t taking Morphin, I am sure I would probably have been in the emergency department long ago due to my stomach. I never thought that you could actually get used to pain, but you do, that statement shouldn’t be confused with either not feeling it or not minding it, it just becomes part of your life, just like feeling hungry or wanting a drink of water, it’s there and you live with it. I honestly don’t know what I would do if I were to wake up one day and find that I wasn’t in pain, nor did movement not cause it, nothing in my life is pain free, it’s more a case of degrees of pain. I have also totally given up on the dream that one day they will give me something that will totally take the pain away, managing it seems to be the best available without putting me into a coma or complete zombie state. It is one of those tough things that goes hand in hand with illness, decisions, knowing and working on, what is right for you. We all have to decide what we can deal with and what we can’t, do we want to feel as though we are on drugs or do we want to have a head clear enough to be able to function as a person. My decision has always been that I want to function, although, I have to say that within that, I would kind of like to have the option of having something to hand that I could take when things get too much. Pain is wearing, it eats you from the inside out and there are is no escaping it. I would really like the opportunity to escape should I want to, that would knock me out for 24hours, long enough to let my body rest and restore, only if it is slight.

As much as I would love to get my doctor to read my blog, no GP has the time to read all their patients ramblings, but if he did, well maybe we might get a lot further at actually maybe not beating this thing, but at least taming it better. I know that on the whole I am very lucky to have the GP I do, even though Adam seems to think that he should be coming to see me for a chat every now and then, but I at least have a doctor who is open to me calling him and saying, “please can I have……”, without getting him upset with me. I am sure that the day will come when the answer will be no, but as thing stand at the moment, we are doing not too badly together, as until he can give me a totally new body, well all we can do is muddle along as we are.

Read my blog from 2 years ago today – 15/03/13 – Endoscope number two > http://bit.ly/WjFD1a

I have to say that yesterday went very smoothly. The ambulance actually arrived on time to get me to my appointment and the whole process of the endoscope was painless and simple, I did like everyone gag as it entered my throat, which had been numbed with a sedative spray, but past that first few seconds although uncomfortable it was all rather painless. The only pain I had at all was after, I was just about to put my coat on………

Communication isn’t enough

Some days you really feel as though you can’t do anything right and nothing is going to go your way, yesterday was really one of those days. It started out exactly as the last few have woken a bit early and 3 visits to the loo within about an hour or so of each other, none easy but a million time easier than it has been recently. Lunchtime arrived and as I stood up I had this feeling of something escaping and it wasn’t wind. I did make it there but from that point onwards, well let’s just say standing up was an issue. The last time this happened was a couple of years ago and it went on for weeks, luckily this time it was just all afternoon, but I must have gone to the loo at least 10 times and every single one of them productive, then suddenly it stopped, but the whole thing was my fault. On Saturday night when I had taken my meds, I had sat for a while unsure how much to take of the new medicine that the doctor had given me and unusually, there was no sticker on the bottle to remind me, just the tiny writing from it’s makers, I trusted my stupid memory and took 20mls and thought no more of it until the constant flow began. I did a quick check online to find that the most I should have taken was 10mls not 20, no wonder it was ripping its way through me or that I had woken early with stomach pains again. It was my own fault and I had done exactly what the doctor was trying to avoid, using high doses of strong laxatives to force everything through me so fast that the result was just what happened yesterday, rather than finding the correct dosage to keep my bowels moving correctly. Last night I took no laxatives or softeners at all, my guts were and are even this morning still screaming their pain at me for what I had put them through and I didn’t want to aggravate them further.

All this constant problems with my bowels are really taking its toll on me, I have been feeling it for weeks now, this constant fatigue that eats away at me, is wearing me down. I know that my doctor is doing what he thinks is right, trying to manage the whole situation, but because he doesn’t deal with many MS patients, well to be truthful, I know when I was diagnosed that I was the first person ever on his books, I don’t know if he others or not, but I suspect he does as there is an MS nurse who works through his surgery, but he really doesn’t seem to understand the knock-on effect of one thing on another. All the progressive forms of MS have one huge thing in common, not just the fatigue but the way that every little thing that happens in our lives affects our health, fatigue is a warning sign, but the real price we pay for anything out of routine and our normality, is a worsening of our condition. It can show itself in as many different ways as there are symptoms, you can even find yourself caught in a mad spiral, where the worsening of one thing activates another and that other, activates the original. Finding our balancing point is probably the most important thing that we can do for ourselves and it took me the first five years after diagnosis, to realize that all doctors other than those who specialise in MS care, just don’t understand that. I think the best example of that is when my GP insists that I needed to go to the hospital for tests, yes I know not everything is down to my PRMS, but I more than they, know that a visit to the hospital is going to make everything else that is wrong with me worse. I will lose my balance point for something I and they know in their hearts, is yet something more that my PRMS is doing to me, the tests are nothing more than box ticking. Harmless for the fit, life destroying for those with progressive MS. Which is why I was delighted when he said he wasn’t going to send me back to the specialists as they too would just keep changing drugs until they found the right ones for me, it is also why I fear landing up in hospital as a patient for anything. Oddly though, this time my body has found something that is almost as destructive, all this waiting, taking odd drugs to my system, testing, hoping, longing and fearing, making phone calls and feeling useless is causing kickbacks all over the place. My balance is so far off now that it feels like it will be impossible to find again, I’m sure I will, but right now my body is a mess inside and out and I am so tired due to the fatigue and the energy that it is all taking out of me and I just made it all worse by trusting my stupid memory.

Adam and I were talking yesterday and we spoke for the first time about both our fears that I might land up spending some time in hospital if this whole thing with my bowels didn’t change rapidly. It was the first time that Adam voiced his real fears of me being in any hospital, it wasn’t for some reason what I thought they would be, I thought because I know what he is like, that he would be worrying about continuing to work whilst managing to get back and forwards to the hospital on buses for visiting. I remember the last time I was in just how drained and tired he became over just a few days and how he went into a panic about keeping the house tidy and having to have it just right for me to come home to, all things that didn’t really matter that much at all. I was sat there ready to tell him this and to say that although I would love to see him daily I knew just how difficult that is when you work and that I would survive if he couldn’t manage to be there. What came out though wasn’t what I expected, he was worried about being able to convince the doctors that I need the high quantities of the drugs that I am on, especially the morphine, or how I live on a tight routine and need to have things exactly as they are for my health, down to my drug routine that probably wouldn’t fit with theirs at all. I hadn’t really thought about it until he said that, but he has a point, hospitals do things their way and they don’t really care what you want or don’t want. The one thing that has always worried me above all others is how on earth I would manage to get the thirteen hours sleep that I need, if you are on a ward, you are lucky if you can get just 5, what with all the noise and the people coming and going, my second was my cigs, especially since using my wheelchair is now so hard. In the last 13 years I have been in hospital 4 times, 2 of them I was lucky enough to get a single room, but other two were hard and I wasn’t nearly as ill as I am now. No matter how they try, our medical system isn’t set up to deal with people like me, people who have a rare and difficult condition that takes over their entire lives, I did think after talking to Adam that it might help him, if I wrote down all the drugs I am on, what I eat when and when and how much I sleep, a care plan if you like. I thought about it and realised that it would make little to no difference, simply because when hospitals are built and systems set up for the care of people, those systems don’t allow for the likes of me. One day the medical profession may get around to talking to each other, but even then, with the pressure on the system and the huge range of knowledge they already have to remember, what is the chances of any of them being geared up for all the rare conditions there are out there? Little to none.

 

Please read my blog from 2 years ago today – 23/02/13 – Shopping trolley chairs.

I had pushed myself to do as much as I could yesterday in my much shortened available time, as I really don’t like things missed or not done, so instead of completing then playing a game to relax, I had no time for the game. By 7:30 I had made it to the settee, but I was in pain………..

Drugs, right or wrong

During yesterday afternoon I received a tweet that at first made me laugh, not because it was intended as a joke, but because of my last two posts. Two days off writing about improving understanding of chronic illness with those who aren’t actually ill and the simple changes and support that could make life better for so many people, to then receive a tweet from an able bodied person telling me to stop “whining and move on”, especially as it was in reply to a tweet which read “If you can live with #CHRONICillness you can do ANYTHING – We’re not #disabled, but enabled”. I laughed at first as I found it ironic that a positive tweet could be seen as whining, I answered their tweet and told them that that tweet, was my reason for being on twitter and maybe they might understand if they read my blog, at that point they unfollowed me. I did actually half expect that reaction as she was showing totally something I had discovered myself before I was housebound, some people, not all, but some are simply intolerant of the disabled. Unfortunately no matter how anyone tries they are a sector of this planet’s population who educating would need far more thought and innervation than I believe I could supply ever. Unfortunately, I have never been known for being subtle, changing their opinions totally without them knowing it is happening, just isn’t my style, I can manage the positive spin, but disguising it as a sneaky something else, it outside my abilities.

Overnight the clocks were turned back, the official end of British summer time. In theory, that means an extra hour in bed, but theories don’t always pan out, after my normal 11 hours sleep, I woke up needing to go to the loo and awake. This, of course, means my day is now going to be an hour longer, that is if I can stay up until 9pm, but I fear that I will flack before that. Even last night, which is my favorite TV night of the week at the moment, “Strictly come dancing” and “Dr Who”, I was from about 7:30 onwards wanting to head to bed. If there is one thing that chronic illness doesn’t respect in any way, it is what makes us happy, I would actually go as far as to say that it goes out of its way to spoil anything it feels like fun. I had only been settled on the settee for about 10 minutes when my body decided that pain in my left side might just be needed. It was the type of pain that simply means that there is no position that you can sit in for more than a short while before it forces you to move again. I am more than used to pain in my arms and legs, they have been part of my life now for so long that I doubt even Adam knows when it is there at its normal levels, yes if I get a peak, but at normal levels no. The longer you live with pain, especially after years of being told that there is nothing wrong, or that I was just imagining it, you learn to cover it up and to act as normal as those around you. I managed my cover up act quite well until around 8 when he started to give me sideways glances and eventually turned to ask if I was OK, as always I said yes, even though his look told me he knew the truth.

Once I did make it to bed I had a real problem, I was feeling terrible, to the point when I stood up to head to the bedroom, I wasn’t totally sure that I was going to make the distance. I have never fully understood what it is that makes me feel like that, or how it is that pain and tiredness is translated by your body into making you feel ill. I am sure there is some medical explanation for it, but it happens and when it does, just like everyone else who feels ill, you want to give in and sleep, the pain in my side though had other ideas. Once I was laid down it started to spread and as always the pressure started to build in my chest, I lay there for about 10 minutes but knew that this was another night that I needed a morphine booster pills. I find it so maddening that you can be exhausted and past just ‘wanting’ to sleep, yet there I am having to take a pill, just so I could. Tablets are part of my life, as they are for too many of us, but despite years of taking them, I always kept questioning what they do and what I really need as nothing would please me more than to be able to reduce my handful’s by even just one table per round. I used to really play around with them, stopping the odd one here and there, it was only last night when I felt so annoyed at having to take one, that I realised I hadn’t been messing around with them for nearly two years. The more I thought about it both last night and this morning, I have worked out that the change happened when they eventually gave in and put me onto Oxycontin and then onto MST. I honestly haven’t missed, or purposely not taken one tablet since then, the only thing I can put that down to is the fact that at last, they have me on meds that work. I can only guess that the reason I kept switching them around, stopping a starting different ones, was quite simply because of what I kept telling the doctors, they weren’t doing what I needed, to have my pain under control, now that it is, normally, I am content to swallow whatever they give me.

I fully understand that doctors are cautious about dishing out high-level painkillers, but surely there should be a list of conditions where the facts are that pain is a significant factor and that people who have those conditions should be listened to more when they say the drugs they are on, are not working. Every time I saw my Neuro after my diagnosis I was telling him the same thing, I am in constant pain and the drugs are helping, but not holding it at a level I could live with. Every time he made a small tweak and sent me off for another year, yes I did say year. It is one thing living with pain at a background level, it is another living with it at a level where it stops you functioning with only annual opportunities to get it adjusted. I did try to get my GP to do something for me, but his answer was always the same, that he didn’t know enough about my condition and that it was down to my Neuro to prescribe the correct drugs at the correct level for me. All that suddenly changed when I was put onto Oxycontin, then suddenly he was happy to talk about what level I needed and what drugs were best for me, he was the one who changed it to MST and without any hesitation increased it when I asked him to and even prescribed the booster pills for me. That change I am sure was brought about by the fact he was now dealing with drugs he knew about, but I am sure that right now there are others out there fighting to get some peace from the pain and just like I was getting nowhere. It is a system that like so many other things is broken, we are the people who know best how our bodies are reacting to the drugs they prescribe and I honestly felt for years that all the decision were out of my hands and how I felt, didn’t really matter.

 

Please read my blog from 2 years ago today – 26/10/12 – Assessment 

Sometimes in life, it is good to sit and just reassess where you are going and what you have done so far. All too often it is one of those things we don’t do, it is all too easy to not really think about life but just keep going, with the odd grumble but no action. I know that I never planned for the distant future, in fact, I didn’t plan past the next payday, as that was how I measured everything. Was there……