Multiply wrong

Posted on March 26, 2016 by livinginalimitedword

Sometimes, good ideas just appear when you least expect them. For me, one appeared yesterday afternoon while answering some of the comments left on yesterday’s post. For a long time, my doctors have done little other than to throw more tablets at me and in around about way, tell me there is nothing more to do. The problem always seems to be that consultants don’t have the time to be able to understand our circumstances, outside our basic condition they specialise in. Our GP’s don’t have the in-depth knowledge of the finer details of our conditions and if like me, you have more than one chronic condition and if one of those conditions happens to be rare, well you are almost on your own, with the issues that they combine together to produce. As long as whatever is bothering us at that moment, slots perfectly into their speciality, we’re fine, but when there is a cross-over or a joined up combined effort, they are lost. Yet, they insist on keeping us under their care until our bodies start to seriously shut down when they eventually hand us over to the palliative care team.

It may just be down to the care that I have had over the years, but it appears to me, that what we need is another set of doctors/nurses, who if you like, will simply be chronic illness specialist. A team who would step in, once the consultants have done all they can, and before true palliative care is required. It doesn’t take a genius to read blogs from people who have different chronic conditions to see that we frequently share the same problems. Nor that the more conditions you have, the more broken and confused our care becomes. This team would be there to coordinate between them all. They would be able to keep a closer eye on our overall health and how we are dealing with our treatments, medications and even our pain levels. All things that the care we have right now lacks. They too would be able to call in any further support required or refer us back to our consultants when they see the need.

Multimorbidity is a nasty sounding word, but once you have three or more chronic conditions, that is the name that then applies to you. We are a group of people who as they word says, are dying in multiple ways. Is it any surprise that we fall through the gaps constantly. Frequently we don’t get the care we need, often because we ourselves don’t know which condition is causing what. Many appear to feel lost, unsure of what is available and who to turn to when they do need help. Having a support team not linked to one condition could change our lives dramatically. I, for example, have a dedicated MS nurse, not that I have heard from her for years. She is connected directly to my Neurologist, and knows nothing and can’t help with anything outside issue caused by my PRMS. I also have an MS nurse through my GP, he is great with MS issues, but nothing else. Outside of my consultant, who are in fact, very good, I have no support nurse or team for my COPD at all. Those two conditions aggravate each other, but right now, I make the decision who to turn to for help, something I’m sure I get wrong frequently. I also have a list as long as my arm, of other conditions, the worst being Fibro, HMS and Vasovagal, all that I deal with totally alone other than my GP. Right now, though, my biggest issue is caused by my PRMS, but I am waiting to see the Gastro surgeons due to incredible pain in my stomach. Confused, well put yourself in my shoes.

I know, simply by talking to people online, that there is a huge number of us in just this position. When you are constantly fatigued, constantly in pain, generally confused by the whole system, caring for ourselves isn’t always that high on our list of priorities. When it feels as though the medical profession has given up on you, and won’t be interested again until we’re near the end, is it any surprise. Yes, I know that on the surface, that this type of team would cost the NHS more, I think in reality that it wouldn’t. I am sure that it would, in fact, free up consultants, other care teams and GP’s. It would also ensure that the correct care at home, the right equipment and aids were also being supplied. Once your health has deteriorated to the level that mine has, the idea that I had one person, who unlike my doctor can come to my home, see me, assess me and instigate the right course of action, sounds like heaven.

Multimorbidity isn’t just a nasty sounding word, it is also a nasty place to find yourself. In an ideal world, all the above would be dealt with, we wouldn’t be left on our own to deal with all of it. What I don’t understand is how there is this sudden point when someone, who knows who decides it’s time to bring in the palliative care team, when we have dealt with everything to that point on our own. To me, that is a somewhat warped way of looking at our lives, that somehow our deaths get the attention we have lacked and needed for years. Somewhere along the line, the whole system has become twisted and for some people, especially those who live by themselves, it has quite simply become cruel.

Please read my blog from 2 years ago today – 26/03/2014 – Rotting before my eyes

I’m waiting, something I don’t think I have had to do for a while, the chiropodist phoned to say she is coming to cut my toenails this morning, once every 4 months they appear, cut them and vanish for another 4 months. It isn’t a problem for me as I don’t ever have to put on shoes or try and walk any distance, but I can imagine that many would find 4 months just too long to live in comfort. She suggested that I file them every couple of days, something I just haven’t done, like so many other things……

The edges of hell

Posted on January 19, 2016 by livinginalimitedword

I have so enjoyed the last few days because of the improvement in how I feel. The Gabapentin rise has worked wonders, not pain-free, but it feels so good to not be wanting to swallow booster tablets, within an hour of taking the last one. Don’t worry, I never did, but I was often sorely tempted. I have still taken a few, but when I do, they do their job and I can get on with life. It all seems too good to be true and I haven’t had to wait too long, for something else to step up on the annoyance scale. For years, I have gone through spells of poor continence when it comes to my bladder. A lot of the time, it is just the odd drip, or the odd occasion, being caught slightly short. Yes, there have been times when it has been a total loss of control and a lot of clearing up to do. All forms of MS seem to have an affinity with bladders. For me, it has mainly been problems emptying it, rather than holding on. I even have a good supply of catheters which the hospital decided about 11 years ago I should be using at least 3 times a day. I did for a while, but then I learned that by using my relaxation technique, I could achieve a huge improvement, so unless, I was having huge issues, I could actually manage without them. There is only one thing that you should never do, and that is to strain in the belief that that will force out what remains, it doesn’t. I have had the odd short spell where I have had to resort to their assistance, but I will try anything else first, as trust me, it is just something that intrudes into your life, that medical benefit or not, you want to avoid them.

It has to be about two months ago, that I had my first bout of waking up and on standing, finding that I have no time for dressing gowns or wheelchairs, I’ve had to get to the loo the fastest way possible. It has to be one of the worst instant quandaries there is. You stand up and a drip runs down your leg, if you sit down on the wheelchair, your bladder is going to empty on the spot, but walking is pure danger. Choose!?! So far, I have gone with the taking the danger route, but not without a huge dose of fear. Last week, I found a new issue and this one made me start thinking. I had been to the loo about 15 minutes before and I was getting into my bed. I had just pulled my legs in and I was tucking the duvet under the mattress, to stop them escaping later, as they frequently do. As I twisted, I felt liquid move and it was a millimeter from leaving me for the mattress. It didn’t make sense, but a similar thing happened the next night. Then to my shock, it happened during the day, the first time I was trying to reach something on the floor from my wheelchair, the second, when I twisted to reach something, suddenly I was on the verge of wetting myself. I guessed that they were both due to pressure on my bladder, somehow caused by my movement, rather than an inability to hold onto it. Then last night, I woke up and had to get up, thanks to the pain in my back. As my feet touched the floor it wasn’t just a drip, but total loss of control. The more I thought about it, the more I realised that every bladder failure I have had recently, where usually in line with the pain in my back or stomach. I think that my loss of control has a lot to do with an overloaded bowel, that I can do nothing about. Knowing that, though, isn’t going to stop it from happening.

My bowels are moving, but I have no idea how long it is taking to make its transit. I do know that it was around 10 to 14 days, but I quite honestly haven’t eaten any sweetcorn for months, so I haven’t been able to check. I know from the pressure I can feel, that it is always full, but I have actually had a bowel movement almost every day for the last week. I’m not traditionally constipated at all. The Psyllium is doing its job, and even when I add in a laxative, as I did last week, it did little other than make me go twice in one day, which just meant I didn’t go from the next 4 days and really changed nothing. This one has me stumped at the minute. If I load myself with laxatives, I am only going to cause more pain, the reason my consultant, took me off them all and told me, to never take them again. I just can’t think of any other way to sort this and it feels so wrong to treat one organ ruffly, because, it’s adversely affecting another. Equally, though, I can’t stand incontinence, regardless which form it is. It is one of those things that you just can’t hide, especially, when it is your husband who does the washing. On top of that, there is the problem of clearing up the trail I leave behind me, as I make my dash. I find it almost impossible to clean it up as well as it should be, especially, when you’re forced into doing the work with your feet. If this was a permanent problem, well yes, there are answers to it, but I don’t think it is. I really don’t want a commode, sitting in the bedroom for years totally unused. Nor are pads the full answer either, yes for the drips, but I don’t know any pad that could have collected what I lost last night.

I don’t care what anyone says, there is a huge mental flip that we are expected to take, and for some reason with ease, when, it is another subject people don’t talk about. I have to say, there has been, a huge improvement in the last few years, with the advertising of feminine hygiene products, as they call them, on TV. It has brought a more mainstream feel to things, but that doesn’t stop you from feeling, that you are basically wearing a nappy. To some, it might seem stupid, and I know without a doubt, that Adam will tell me, but I find it personally easier to talk about my death, than I do about a bladder that is failing, regardless of the reason. If, I could get out and about, if, it were just a case of stopping off at the chemist and buying what I needed, then quietly dealing with it myself, it wouldn’t be a tenth of the problem, but as it now stands, I have no choice. I can’t do these things, I am forced to ask Adam, to do the shopping for me, and I find that really painful. It is things like this, that make being housebound difficult. I can deal now without even thinking about all the other issues it throws up, but when it comes to things like this, I find it hard. We all need some things we want to keep private from our partners, not hidden, just discreet and private. For me, this is probably, along with bowel incontinence, which yes, I have had a spell of, that I would like to have at least the choice, of keeping it private. The only alternative that I am aware of, would require me to request a visit from the incontinence nurse, she would them be able to set up a prescription for these items. The downfall there, is, that you have to order them every two months, stop, and you have to go back to the start of the circle. I hope that this will just be another one of those phases. That within a short period of time, things will go back to normal and the problem will be gone.

I’m not stupid, I do know that regardless what anyone does, I will find myself eventually, bedbound and having to wear a nappy. They can call it what they want, that is basically what it will be. Even the alternative of a catheter with a bag isn’t much more comfortable on the brain. It is one of the details of life, that is high on my list, of things that would just make life, unbearable. I suspect it is for most of us. It may be a hell that is a long way from now, but every time I go through a spell of this, or almost anything to do with my bowels or my bladder, I know that what I am feeling, is the edge of it, or if you prefer, a taster of the loss of dignity I face, and that’s something most humans prize greatly.

Please read my blog from 2 years ago today – 19/01/2014 – One simple step

I woke early this morning, at first, I wasn’t sure as I have woken in a gentle slow way and at first, I was totally unaware of any reason for it. I lay there with my eyes shut with the thought of sleep first in my mind, then I liked my upper lip, suddenly…..

Avoidance issues

Posted on January 13, 2016 by livinginalimitedword

I just spoke to my Doctor and it was a phone call that has left me rather angry. It appears that he miss read the letter from the pain clinic and their suggestions of how to change my pain meds. Right now I am taking 900mg of Gabapentin three times a day. When I phoned the doctor last week, it was to see if I could get this raised, as I was sure that there was still room to increase it. I had this vague memory that when I was at the pain clinic, that they said this was one of the options that I had. I was rather confused when the doctor said that I was already on a dose that is above the recommended and that I clearly couldn’t have any more than that. It appears that the clinic recommended that it was raised to 1200mg three times a day, that was 18 months ago. So as of lunchtime today, I will be taking the new dose for a period of two weeks to see if it is enough to bring my pain under control. If it doesn’t, apparently, they also suggested that we try changing it to Pregabalin if that fails. I’m angry because the way he told me this today, it sounds as though I should have had the raised dose of Gabapentin ages ago, after all, I went to the pain clinic because my pain was rising. My GP, at the time, wanted to raise my Morphine, by I chose to stick to using the booster pills, as they gave me greater personal control. It has worked fine until the last six months, when I have struggled, not wanting to mention it, because of my fear of having to take even more Morphine. Normally, he is a great doctor and I have no problem with his care of me, but this, well this has angered me. I really wish that when a consultant writes to a GP, that they also sent a copy of the letter, to the patient, that way, I would have known all this and not relied on his memory. It’s totally unfair to ask a GP to remember every detail, of every patient that they have.

Over the last few years, all the old-fashioned paper notes have been transferred to computer systems. Understandably, but unfortunately, the GP system is totally separate from the hospitals one. For a very long time now we have had the right to see our notes on request, which means that you have to go to them, to be able to look through our notes. Being housebound, means that despite having the right, I can’t carry that right out. With it all being computerised, I personally believe that we should all be issued with log-ins, and be able to look at our notes whenever we choose. For someone, like me, who has a complex array of conditions, it would mean that I could keep track of all notes added, all suggestions, and what has already been tried. Consultant only writes to GP’s, either if they have prescribed a new drug, or when they have signed you back into the care of you own GP. Of course, GP’s only ever write to Consultants, when they have a patient they want them to see. The result is, that much is missed by both sides. I wouldn’t have missed these suggestions and I could have spent my time, assessing what might work best for me, plus I would be armed with all the details, that I have long since forgotten. I have forgotten so much, that different doctors ask me about, like the names of the drugs I have already tried, when and what one doctor said about something and so on. I have the time to arm myself with the info, that might make my future treatment, just that bit better. Although I have great faith in my doctors, both my GP and those I see at the hospital, the gap between the two is becoming, more and more visible as time goes on. It’s a gap that I feel I could fill, as could many with multiple conditions.

Clearly, from what I have just written there, I have removed the Duloxetine from medicine list and returned to my normal dose of Amitriptyline. Last night, for the first time since I took that first horrid little capsule, I slept right through the night until at 7:30, when I had to get up to go to the loo. I know I could have gone back to bed, but I decided to stay up, as not only had I slept through the night, but I also actually felt more awake than I had for days. The last four nights supplied only half the night in a deep sleep, and the other half, in a fitful half world, as unpleasant as the days that followed. Today, I feel like me, and that is a really good feeling. To me, I have just wasted 4 days of my life, because of my doctors mistake, as when I spoke to him last week, my request was for an increase in my Gabapentin, not a new drug, that would shred me into pieces. Mistakes happen, but that doesn’t make them any more pleasant.

Those who read my post from two days ago will know, that I had one of those horrid light bulb moments. The words “palliative care” appeared and I was hit between the eyes, by the fact I knew that the day I went onto Morphine, all though they didn’t say it, that I was at the end of the road. It’s amazing how when promoted to think of our care in one way, rather than another, that we happily carry on kidding ourselves. I remember at the time, briefly thinking this is the end, but my doctor waffled on about how there were still options and possibilities, although they didn’t name them. Clearly, their waffle was intended to pull me away from thinking I had reached the point when palliative care, something which is normally linked with the end of life care, was needed, and it worked, partially. Yesterday, that wall crumbled and I spotted the unspoken truth. Oddly, rather than pulling me down, it has left me in a very calm and subdued state, almost as though it removed not just a wall, but one that had spikes on its top. I feel as though the confusion of questions that didn’t quite make sense, are starting to solidify and showing the roots I need to go down, to put them to rest.

I have also been given a few pointers by several different very kind people, I know it’s not like I can make a list, this is an organic process, one that I will, of course, share here. I have also realised, that whether Adam wants to talk about it or not, he will have too at some point, just as I am going to have to get involved with groups like social workers, who I have body swerved at every turn. I’m getting ahead of myself, they aren’t top of my list, but they are on it, yes, I’m still avoiding them, but just like death, there are something’s in life, we can’t avoid forever.

Please read my blog from 2 years ago today – 13/01/2014 – Spasms are not what you think

I woke this morning on a bed that didn’t have the upper mattress hanging 3 inches over the edge of the lower and an elevator that lifted both sided of the mattresses at the same time. Adam and I pulled the webbing…..

The missing link

Posted on January 12, 2016 by livinginalimitedword

Would you believe that I still can’t make up my mind about my meds? I didn’t call the Doctor, I decided that I had to be a grownup and make a decision for myself. So here we go, this is my decision-making process, a peek inside what’s going on in my head, I just hope we find something. The starting point has to be to lay down the reasons and options. This whole thing is about getting my pain levels back under control. Over the last few months, they have been rising along with the increase of all the sensations that my body creates. They are inclined to trigger each other and I land up in these maddening spirals, which escaping take a rather large mallet, it’s just finding the right one. I have talked about extensively in the last month or so, about how I am being driven to the edges of distraction by a body that is out of control. If you don’t know the details, well it’s all written here, you just need to go back a couple of weeks to get right up to date.

It doesn’t take a genius to work out that living in constant pain, above the level where you are comfortable, isn’t nice. There are no painkillers that totally remove the pain, but to date, a combination of Morphine, Gabapentin and Amitriptyline have done the job not too badly. Both the Gabapentin and Amitriptyline are at their peaks, there isn’t even any wiggle room left there. Which leaves the Morphine, technically, that can climb and climb, up to unbelievably high levels and my Doctor is more than willing to raise it. It’s me who has the problem, with that.

I have this inbuilt fear of raising it any quicker than is absolutely and I do mean absolutely necessary. It’s a fear I have had from the very first time they mentioned the word. To me, Morphine is the drug of last resort, it is only used when everything else, has failed, and there is no hope left. After all, they don’t hand out Morphine for a sprained ankle, it is a drug that has a finality about it, if you like, it is the drug of the dying. I have been on it now for about 8 years, possibly 9, I’m not sure. What I do know, is that it scared the hell out of me, I took that first tablet expecting to feel drugged and out of control. What actually happened, was my pain almost vanished, other than that, nothing. I wasn’t having hallucinations or any, of the other things that for some reason I expected to. I was pleasantly surprised, but still hesitant about that name and the pictures it conjured up. MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are controllable. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years

MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are in my control. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years is too far off to be able to get any real answers. Morphine scares me because, it has and always will spell out the end of life, the end of my life.

The Duloxetine was prescribed to replace the Amitriptyline in the hope that it would offer a higher pain relief. I would have to take it for about three weeks to see if it does or it doesn’t, but it’s doing to me all the things that I fear about Morphine, which is beyond ironic. I have now taken four 30mg tablets, over four days, the first was the worse and each one since, has been slightly less reactive to the previous. I am still feeling disconnected, sensations are still heightened and I don’t feel right, which I really don’t like. On Thursday, I am supposed to double that to 60mg, right now, that terrifies me, as it also means the end of the Amitriptyline. I won’t miss the dry mouth, but when it is gone, will this new drug then turn out to be useless, will I be spaced out, terrified and in more pain? The only way to find out, is to do it, but is it worth it? I could just quite simply take the uplift in the Morphine and tell myself to stop being stupid.

This is the problem of owning a brain, if we didn’t have one, life would be simple, well maybe not, but you get my point. My problem isn’t physical, it is literally all in my head. I might know exactly where I am, I might have accepted exactly what that means, but it appears, that somewhere in this stupid head, I’m just not ready to act on it. Yes, I can throw the drugs down my throat, I can sit here day after day content in my day and my life, but I’ve been avoiding those bits I just don’t like the sound of. I’ve been giving them a rather large body swerve. The odd thing is, our care actually allows us to do just that. Look it up, “symptomatic treatment” and “palliative care” are exactly the same thing. No one ever said that all they could offer me was “palliative care” because, they know the mental connections that phrase would light up. No they said, there was nothing else they could offer, other than “symptomatic treatment”. Call it what they want, I don’t think that I really have a choice here, I want the pain back under control and I don’t want to feel like I do. The truth is, that either way, Duloxetine or Morphine, the treatment is called the same. My body has made the decision, I don’t think it could have made its opinion of Duloxetine any clearer, it not for me. Tomorrow, I will call the doctor with my decision and go with the increased Morphine, at least, I know where I am with that drug, unlike now, where I’m fighting to just know who I am.

Please read my blog from 2 years ago today – 12/01/2014 – A mind in free fall

I am coming to the conclusion that there are things in life that are simply designed to drive you mad, those things that one day work and the next don’t, are at the top of my list. The charger for my e-cig, isn’t working…..