Emotional overflow

I found myself sitting here falling into floods of tears, for what feels like no reason. I was fine until the district nurse called, it was the one that I really like, although I can’t tell you her name, so nothing new there then. She was the one who came to see me first, to talk through the whole process of them coming here to give me eneama’s and to help me with the problems I had then recently started to have with my bladder. I have seen her a couple of time since then, but following that gap and after the news I had from the continence nurse the other day, I decided to update her. When I started to tell her about the possibility of having a permanent catheter, the tears suddenly started to flow. I didn’t expect them, as there hasn’t been a single one until then, but with the door opened, they have just kept reappearing without permission.

All of this intervention and changes that are underway with my carers, plus the feeling that I am losing more and more of my abilities to live normally, just suddenly became too much. I know that right now, nothing is definite and in many ways that in itself, is making it all the harder. Right now, I would love someone to just say this, this and this are happening and it will all be done by such and such a date. As I said to the nurse, I hate the fact that it is up to me, to make the decision as to if or if not I have a stoma. All this fiddling around with eneama’s which work sometimes and not others is starting to get to me. If it were as simple as them pushing the liquid in and I sat on the loo and everything just left my body, then great, but it’s not. Again today it failed, nothing other than a couple of tiny blobs that must have been sitting low in my guts. The bulk, the bit that has been sat there for two days, causing me discomfort and even pain, didn’t shift at all. Of course, we didn’t know that was what was going to happen when we were talking. She had asked me if I had an appointment to return to the hospital, which I don’t, I told her that as far as I knew,  it was now up to me. If we didn’t get a result with the eneama, good enough to leave me comfortable, and if I decide that I can’t handle things any longer, then I will request a return appointment, to give the go ahead with the stoma. She said that she was going to check the letter from the doctor, as she said that she felt that there should be some kind of follow-up.

Having gone through all the disasters of the eneama’s failing, and the fact that I am still finding myself no further forward in getting rid of the pressure and the pain, I agreed that it was time to try a change. Although it was something I don’t really want, from the point of view of having space in my life for other things, like being me, we’re stepping it up to three times a week. Monday, Wednesday and Friday, if that fails, we’ll go for every second day, which is what the consultant wanted, but not my GP, the district nurses, of myself, who all felt that was just too much. We have to try everything as a stoma, is the final step, one that I don’t want to take, if, something else could mean I could avoid it. As I said the other day, I believe that my bowels are behind my bladder not wanting to empty, so it could be a fix for both. No, I don’t want a permanent catheter either, if it can be avoided.

When she left, I was still lying in my bed, with tears rolling down my face. It was me who told her to go, I felt able to get off the bed and to go by myself to the loo. Keeping her there, felt like another pressure that I didn’t need, as I knew she had many other people to see. She double and triple checked and assured me that if I needed her to stay, she would, but with her gone, the tears then flowed freely, without the restriction that I was putting onto myself, of not wanting to cry in front of her, for what felt like no reason. I lay there for about another ten minutes before heading to the loo. I already knew that nothing was going to happen, I had had the eneama inside me for twenty minutes and I felt nothing. I pulled myself together while I sat there on the loo and told myself to stop being so stupid. It kind of worked, if two or three times an hour escaping liquid running down my face, could be called working.

I don’t know why I suddenly feel as though I am under pressure by all of this. It’s not like anything has really changed. Maybe, it is a psychological change that is needed. Maybe, I need to start seeing my eneamas as routine, not as something that is there as some sort of demand to perform. I’m not stupid, I do realise that it is the fact that I have the final say when it comes down to the stoma, that is getting to me. I so wish someone else would stand up and tell me what to do. I just don’t feel that my mind is in the condition to make such a huge decisions, as it feels like it should be a purely medical decision, but I also see that it can’t be. The continence nurse saying there wasn’t a safe amount of time to have a bladder that didn’t want to empty, hasn’t helped either. There must be a point when it changes from safe to dangerous. I don’t want to call for an ambulance for my bladder to suddenly empty by itself when I reach the hospital, just as it suddenly let go other night. I don’t want to even have to go to the hospital at all.

The district nurse phoned me in the afternoon, as she said she would. What I had said was totally correct, the decision about the stoma is all up to me. I admitted to her that I am at this second in pain from my guts, she rightly said to me that it’s a long time to Monday, so one of them is going to be here tomorrow, to try again. Maybe tomorrow, it will be totally different. Maybe tomorrow it will work, and maybe tomorrow I won’t have to worry about all of this ever again, which tomorrow that is, I don’t have a clue.

 

Please read my blog from 2 years ago today – 06/08/2014 – I’m still here

Everything has to be rushed this morning as Teressa and John will be here around 11am, they are coming for lunch today as there is some show that neither Adam or I have ever heard of, but apparently has been running in Glasgow for around 20 years, that they want to go and see. It is always the way……

The rights and wrongs

There is such a huge possibility of drugs out there, that it is hard to know if what your doctor has given you is the right drug or not. I have spoken to so many people with not just MS but a huge range of conditions, about what they take and how it works for them, what has surprised me is the two things, the number of people who blindly take their tablets without out question and the number who are too scared to actually even take them, if you fall into either group, well I’m sorry if I upset you with what I am about to write, but these are my views and mine alone and I will explain why I have formed them. I have in the past touched on some of this but my intention it to go that bit further.

I don’t think I have ever not taken a drug that was given to me, the simple reason for that is, I honestly do think that despite my occasional irritation with them, doctors do know best. You only need to put the most simple search into Google to find a million cures for every single chronic illness there is, especially the incurable and deadly ones. You could try every single one, if you can afford to, but to date apart from the odd person here or there, none are cured and eventually return to mainstream medicine. The majority still find the their doctors solutions either actually work, or are the best and most frequently successful in controlling their condition, for many of us that is the best result we can ever expect. I don’t say this from only the side of someone who is a fan of conventional medicine but I also say it from the side of someone who has dabbled in the dark side, in the hope of a cure, for me homoeothermy, diets and “wonder foods”, didn’t work. So I do start from a position of trust in my doctors, even the annoying, rude ones, they might lack as people, but their knowledge of cures, potions and lotions, is greater than mine and I accept that at least. If I am prescribed a drug to take, I at least do them the courtesy of trying it before deciding that it is not for me.

I know that there are some people who take there medications home and then do the worst thing possible, they read the leaflet inside the box. If there was anything that was going to scare the hell out of someone it is those leaflets with all the possible side effects, the word most people seem to miss is “possible”, it isn’t a list of what will happen. Never, never read that piece of paper when you bring your tablets home for the first time if you want to go through the next week with half a brain intact. It is absolutely guaranteed that if you tell a group of people that a spoonful of sugar is going to make them sick, that some will be throwing up before they have even had time for it to hit their stomachs. The leaflet is there so if you suddenly have purple spots on your nose within a day of taking the first one, that you can check and see if it might be the new drug that is causing them, or your 6 year old neighbour sneaking into your house when your asleep. The leaflet is a legal requirement and a nervous persons charter for taking placebo to it’s most deadly effect. I have lost count of the drugs that I have been on through out my life and if there is one thing that I can say without the slightest doubt is, I have never had a side effect from any medication even once. I can say that with total confidences as there isn’t now a leaflet that I haven’t read, simply because I have had new symptoms appear and I have then checked to see what the cause might be & never has it been my meds.

I doubt that just reading those two paragraphs will stop a doubter from not taking their meds, so the last ditch attempt is this. Firstly, doctors train for years, not to make us ill, but to make us better. No doctor, other the tiny amount of lunatics who have been jailed over the years, which is a very tiny number, sets out to make patients more ill than they already are. Your doctor knows your health, what medication you are already on, if you have had any problems with meds before and what is the right drug for your symptoms. With years of training, experience and spending their entire lives steeped in caring for the sick, why would they choose you to suddenly change all of that for and risk throwing away their lively hood. If that doesn’t convince you to at least try it, then please go back, see your doctor again and discuss your worries and concerns, you are never going to feel better by putting your medication in the bin or doing something I saw on TV a while ago and couldn’t believe actually happens, people hoarding years of tablets, to scared to tell their doctor they aren’t actually taking them.

All that said, I don’t actually believe in blind faith in your drugs either, don’t pull a stupid face, it does make sense, read on. I have been questioning my medication for the very start, I even wrote a piece back in May two years ago, in which I explain that I test my meds, well I still do. I started testing due to some meds that didn’t seem to be having the desired effect. I had been taking them for several years and although they did have an effect to begin with, it quickly wore off, but I kept taking it just as I was told to. I guess that I must have taken it for about two years with no result what so ever, but it was on my list of drugs to take, so I did. On my annual visit to my neurologist I discussed the fact they weren’t working and he kept raising the dose, but I might as well have been swallowing Smarties, they did nothing, so I stopped taking them at first for a day just to see how I felt. I have to say I did dread the idea of not putting a tablet that was supposedly keeping me awake, was I just going to sleep all day or what. What happened was nothing, there wasn’t a single change in me in any way, so I went for the next day and the next and eventually through them away and never requested them again in my repeat prescriptions and the doctor never mentioned them again either.

There is a strange double edgeness about doing something like stopping a course of medication without speaking to my doctor about it, I really felt like I was breaking some kind of law, or that my doctor might suddenly say if I didn’t take them he didn’t want to see me again. I am like most people I think, in that I don’t want to be putting unnecessary chemicals into my body, medicine is no different, if it isn’t helping me I don’t want to take it, but only if it isn’t helping me. Right or wrong, I still test all my tablets one type at a time so that I can be sure which medication it is, stopping more than one at a time just makes no sense. Every medication that I take is needed and does exactly what it was prescribed for and nothing else and yes I have even in the last few months checked that my Morphine is working, in the case of those prescribed for pain, I seldom manage more than an hour without searching them out and taking them with relief. Some might say that it is madness to play around with drugs, but none of my drugs are there to keep me alive in the short term, they are there to treat symptoms, all that can be done for PRMS. If you are on a drug that literally keeps you alive, missing out a dose or two, might not be a good idea and personally I can’t think why anyone would take such a chance, but don’t do it.

There is one last thing that I think everyone who has chronic illness have to bare in mind when it comes to drugs, not everyone reacts to them identically. Just because your friend down the road has the identical illness and is on a particular drug that works wonderfully for them, doesn’t mean it will work for you. I guess my illnesses show that one wonderfully as there is a huge range of drugs for people with RRMS, not one of which works for PRMS, both may be Multiple Sclerosis but that doesn’t make them the same. Even those of us who share PRMS will probably be on different drug regimes, as it is so tailored to the person, that we all go through a trials and testing of drugs for the first few years until we narrow it down to what works for us. I have never been happy about the number of drugs I take daily or the fact they are in such a huge selection of different forms, from tablet, capsules and liquids, or that they are all different shapes and sizes, but when you have problems swallowing you always go for the version that works best. At my worst I used to have to crush them all and flush them down my nasal tube, at others I was mixing the crushed mess with maple syrup, now I try to swallow as many at one go as possible, that way my throat opens and the majority pass. What I take and how I take them will go on for ever, just as everyone else’s life with illness does.

 

Please read my blog from 2 years ago today – 25/11/12 – Belief in Placebo 

I was about to start writing when one of those infomercials appeared, what it was selling really isn’t that important as 100% of the ones I have seen I have never wanted to buy or……

A simple choice

I got up this morning actually really looking forward to what I expected to be a straightforward day as yesterday afternoon, Twitter eventually fixed the issue allowing me to log in and be part of the community again, rather than just an observer who was only allowed to tweet if I scheduled it for a later time. Everything seemed fine, I could follow, like, favourite and tweet, perfect I thought, then I tried to see who had interacted with tweets, only to find some bright spark developer has changed the program as they often do but has manage to make it such that you have no idea who likes or favourites anything, there is just a total. There is a workaround using other platforms, but it is so slow that it just isn’t practical. I really wish that developers would leave things alone, I know they would be out of a job if they did, but to me, a good developer makes changes that helps people, not annoys the hell out of them! I put a tweet out asking to be sure that it wasn’t just me and at least it is not this time.

The more I have thought about yesterday’s palaver over my hospital appointment, the more bizarre the whole things seems. I have like every person out there with poor health have had to rearrange hospital appointments for one reason or another, just occasionally I have totally cancelled appointments because the appointment took so long to come through that the reason for it has healed, just like yesterday, but not once in my life have I had the hospital phone my GP and my GP then call me, to push me into rearranging it. I can’t help but get the feeling that they really do think there is something more there than just a difficult to heal ulcer. I know the mouth is supposed to be the quickest healing part of our body, but as I know all too well there are always exceptions to the rule. I guess I will find out when we go there in a couple of weeks time, the date actually works well as Adam is off work that week, so there is no need for him to arrange emergency time off. Why is it in life when you think you are doing the right thing by not wasting other peoples time and money, that that right thing turns out to be totally wrong.

It seems that this week is doomed to just be wrong, everything even the little things in life just don’t seem to be working correctly. Adam thought last night that he would be helpful and rearrange the bed before I went to sleep, I came into the room to find him moving my pillows, but I could see he had done something else but it didn’t click until I got into bed and lay down. He had shifted the mattress by a few inches, it has a habit of working its way over the edge of the frame but he had moved it another 2 inches past that, so when I lay down, I was on the edge of the mattress, with pillows no longer shaped to my head and the edge of the mattress topper sticking into my arm, everything felt wrong. I don’t know what it is about beds, but if they are not just right, the whole purpose of being on them is totally lost. I know I do have a bit of the princess and the pea thing going on with my body, but even before that started, beds just have to be right. I know it is one of the reasons I hate having to stay in a hospital, that along with the noise of other people, but I also think it is part of the reason I don’t like going away on holiday. There was no way I was going to be able to sleep, so I had to get up and undo everything he had done, then thump to submission my pillows, before climbing back in, trust me, my muscles don’t like that kind of excursion, at least I was just seconds from sleep.

I have a feeling that if you asked the majority of people with either Fibro or MS they too would tell you that our beds are the most important thing in our homes, not just because we spend so much time in them, but because it is often the only place that we can find comfort and some peace from the pain. I know that there are days when the constant thought in the back of my head is a counting down clock, ticking down the minutes until I can head back there, it is like some kind of womb, the only thing it doesn’t give me is food. I was the person who never stayed a second longer in my bed than I absolutely had to, someone who saw going to bed and having to sleep, as more of a punishment rather than a slice of heaven. Now, now the second I have done what I do in my daily routine and once I have spent a couple of hours with Adam, the only thing in my head, is bed. I don’t understand how though it is that I now seem to have this switch inside me, that regardless whether I think I really need to sleep or not at night, within seconds of going horizontal, I am asleep. In the day, well not always, but even if I don’t sleep I can lie there just enjoying the fact I am motionless, in a dark and warm place where my body is supported and my muscles can do what they want the most, to rest. When my lungs started playing up, I went through a spell where I found sleep not such a great thing, having my lungs feeling like someone was sitting on them, well lets say it was enough to take away the gloss. These days I no longer lie flat, the elevator that was fitted to help me get out of bed, turned into a huge blessing as it means I can sleep with the top half of me raised slightly, it isn’t a cure, but it sure helps.

I know after reading that that those who don’t have my conditions will be wondering why I don’t just stay there if it makes such a difference, why don’t I, well that’s easy, I don’t want to miss my life. I know my life isn’t the most exciting or the most glamorous, but it’s the only life I have and I want to make the most of it, not spend it with my eyes totally shut, I miss enough as it is. That was the simple answer, there is a deeper one as well, the fact is the time will come when I have no choice, choice is one of those things that we all have and most of us think nothing of it. We make choices all the time without even knowing we are, will we take a sip of drink now, or in a minute, shall we wear this outfit or that, those shoes or the other ones. Choices fill every waking second of our lives, but just as your health goes, so do our number of choices and more importantly our free will. It doesn’t matter any longer what it is I want to do, what matters is what I am capable of doing. I can right now make the choice to be sat here doing what I do, I am not going to let go of that any sooner than I absolutely have to.

 

Please read my blog from 2 years ago today – 20/10/12 – Peace is returning 

Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have…..

Who am I

Unbelievably I am still locked out of my Twitter account, despite contacting their support team nearly 24 hrs ago. On the good side although I can’t interact with my followers or return the follow of my new followers, I am still able to send out everything through the scheduler, so to the majority it will look just the same as usual with none of my normal content missing, but I hate not being able to not interact even by clicking the “favourite” button. Despite getting wound up about it for the first half hour, I then just told myself there was nothing I can do but wait and wait is what I have done, plus send another email to them this morning to let them know it still isn’t working.

I was supposed to be at the dental hospital this morning, but for once, one of my minor wishes has come true. Thursday morning was the last time I had any pus on the back of my throat when I woke up, after that it was dry, there was still a tiny white dot there on Thursday but the swelling was going down and things did look better. Yesterday afternoon, I declared the ‘Thing’ dead! Two days of nothing bad happening and the fact that although I can still feel some tiny lumps, scar tissue, they are actually so small that I can’t actually see them. I decided that I was going to look really stupid turning up to show them nothing and that the best thing to do was just cancel the appointment and the ambulance. I actually cancelled that yesterday, as I expected with it being a Sunday I simply got an answer machine and a load of buttons to push just to get there. Adam was here and he said that it was the same when he booked it, clearly it is a new system that has been set up in the 18 months since I last used it, but I can’t help thinking that it is a really bad thing. I know from my job, as I was responsible for the programming of the switch, that the use of these selection menus is great for call centres as it means people get to the right person and the time being spent passing customers around it reduces most customers stress levels, especially useful with it is someone who wants customer services. Where it falls down is with the elderly, many find them difficult to listen too, due to lack of concentration and poor hearing, they also are inclined to panic about hitting the wrong button, then do. The patients transport service is set up to take people to appointments who are unable to get there any other way, like me, I need a stair-climber to get down to street level and in some places to get me into the building where my appointment is. The majority of their passengers are the elderly, the very people who find the whole thing too difficult, I have to say that my concentration problems does at times mean I find them just too difficult and hang up, there could all too easily fall through the net and not attend the appointments they need to.

Our phone just rang, I was shocked to see the display saying it was my doctor calling, the hospital had phoned him as I had cancelled the appointment, they seem to have decided between themselves that I need to be seen. He put it along the line that since I hadn’t been to a dentist since I have been housebound, that it might be a good idea to at least go for a dental check-up, I did feel rather ganged-up upon, so I have agreed to go but it needs to be in a couple of weeks time so that we can make proper arrangement with Adams work and so on, rather than this rushed last minute affair. I guess I should have just gone today, but I still think it will be a waste of everyone’s time as there is virtually nothing to see any longer, I do have to agree that I need my teeth seen to, as I have managed to break two in the last seven years and I know that one at least will land up being pulled as there isn’t much there for anyone to work on. I guess this weekend was doomed to be one of those things, just not going the way that I expect them to go.

It is one of the odd things that I have noticed since I have been ill, I no longer deal well in any way with being told what to do, even if it is done nicely. I know that could be for several reason, firstly and most likely due to the damage to my frontal lobe, that causes you to react to things in ways you would never have done before, it controls personality expression and our responses to any situation that might appear, along with our ability to make good decisions, as in not putting ourselves in danger. It is also the place where both our long and short-term memories are stored, well more lost than stored these days, it is our centre of reasoning and without all these things working correctly or not at all at times, it is easy to see why life is difficult. My sudden desire to start crying as I put the phone down, was clearly not in my control and it was also something I wouldn’t have even felt years ago. I suppose it could also be argued that it may well have been behind my cancelling the appointment as clearly neither my doctor or the hospital think it is a good idea not to go, they seem to think it needs to be seen, so was I making a bad decision?

The second reason is even simpler, I have lost so much control over my life, that anyone trying to get me to do something I don’t want to, feels like I am losing even more, control. As an adult we are expected to be in control of our own lives, not having others making decisions without our input, or our input being run over totally and ignored or manipulated. I suppose there could be a mix of all those things, but the result is a desperate need to understand why and what is happening. I can have all the facts laid out in front of me, just as I have laid them out for you and I can apply all the logic I want to situations like this, but it doesn’t change how I feel. When there are alien emotions and feelings, that you know are wrong without being able to put your finger on them, you do really feel like you are going mad, another part of loosing control.

I guess I have spent far too much of my time in the past few years trying to get to grips with the things that are happening to me mentally. It is nothing like the physical changes, those are easy to understand they are real, tangible and can be documented in ways others can understand. The loss of your own mind, your own abilities and capabilities, well they are so different and so fine that explaining them, is like trying to catch a bubble, I can see it, run my hand around it, but just as I touch it, it vanishes and I am left struggling to find the next word or sentence that anyone would make sense of in any way. Our minds are us, it’s a simple concept, one we all understand, but when parts of it fail us, then who are we? I haven’t vanished, physically I am still here, mentally there is less and less of me as a person, I am loosing me. I may be able to write, to reason and to sound like a person with everything intact, but the truth is, I am not who I once was and it’s scary being inside watching it happen with no way out or of putting on the brakes.

 

Please read my blog from 2 years ago today – 20/10/12 – Touching the floor

I was looking for something else when I came across this picture and it actually really shows just how I am feeling just now. It is all rather dark at the minute but this morning that crack in the clouds has appeared and I feel lighter in myself. I am not sure where the change came from but when I woke……