Multiply wrong

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……


To my amazement I was wrong yesterday when I said that I wasn’t going to the loo yesterday, I did, but I now also know why I slept so well the night before. It was around 3:30 when I woke about ten minutes earlier than I had my alarm set to end my afternoon nap. I just assumed that I had woken early as that was all the sleep that I needed right then, so I just got up, dressed and got ready to go on with my day. As I dressed I noticed that my skin was clammy, the house didn’t feel any different in temperature, but I decided to only put on one dressing gown, instead of my normal two. The stretching motion required in that action triggered a stomach cramp across the top of my stomach. Stomach cramps on their own are bad enough, but as it cramped as so often happens, it put my diaphragm into full spasm. I am totally used to living with it in a semi locked position but when it locks tightly, it isn’t always easy to do the right thing and relax, not panic. The stomach cramp alone wasn’t a stop you dead pain, but one that more than just got my attention. After standing still for a couple of minutes while I did my best to let the whole thing pass, I fetched a glass of coke, I came through here and sat while my PC booted up. My plan was to spend the next hour relaxing while playing one of my games, all part of my trying to do less and relax more. Just sitting there I found myself getting more and more uncomfortable and sweating more and more as the discomfort in my stomach was growing exactly in line with it. Within 15 minutes, I had ditched the dressing gown and was mopping sweat off my body and it didn’t end there. I knew that without a doubt things were moving and they were letting me know about it. Pain levels rose and rose and then suddenly stopped. It was all in my upper stomach and worst as always on the left side below and just under my ribs.

There was another 20 minute after that, which I recognised all too well. The discomfort was moving and I found myself sitting rocking back and forward. I don’t know why I do that, but it is some kind of instinctive action that has a comfort value that I don’t understand. Then just as suddenly as it all started, it stopped. All that remained was a building pressure across the top of my stomach, which also stopped and just settled into its normal pattern of discomfort. I thought that was it, nothing else was going to happen but I was wrong as eventually, I received the message that my body was ready to ditch the results of all that pain. Actually going to the loo, is totally painless, it takes effort as otherwise the pain then starts to build again just lower down. Once I had been to the loo, I started to join all the dots that I had noted.

Every night that I have woken in the past few months had one element of that hour. The most notable other than the pain is waking in a terrible sweat. No, not the menopause, that is nicely under control, if my HRT wasn’t working, I would have sweats during the day without pain, which I don’t get. It has been that bad that on a couple of times I have had to put a towel over the wet sheet and turn the duvet over so that I don’t have to have the cold wet sheets against my skin for the rest of the night. On several times, because I sleep on my back, I have woken with pools of sweat sitting over my eyes held there by my sleep mask. I can’t open my eyes until I have the mask off and I have dried my eye socket, otherwise it stings like mad. I don’t know why I hadn’t put the two together before but I just didn’t have a reason to do so. Yes, I have had sweats during the day due to the pain, but never that bad. They are usually just short lived and vanish as quickly as the pain subsides and just like at night, I am never overheating, just sweating. All these things have been happening more and more since I started on the Psyllium. The reason is easy to see now, everything is bulked up in sizes and moves more freely as it produces a slippery sort of gel. Whereas in the past nothing moved or when it did it was sudden and very short lived, now it is all moving more and causing much more pain. If I needed proof, last night I woke covered in sweat and I sat rocking in the kitchen as I smoked a cigarette and my body normalized again. That time it wasn’t productive, just a prelim to what I hope will happen later today. Right now, I am very uncomfortable, rocking nicely and about to take a booster pill as after an hour and a half of it, I have had enough. When I saw the consultant he did say that the Psyllium would fix constipation and that the pain was something I would have to pursue the answer for, he never said that Psyllium would actually make the pain worse.

It appears that there was a rule that was written in secret a long time ago, that even doctors don’t seem to know. Change anything and you will without any doubt upset something else. It is one of the features of dealing with chronic conditions especially if you have more than one and it is guaranteed to make life difficult whenever it can. For the last few months, I have been living with the fact that all the problems that are going on with my insides thanks to my PRMS has been upsetting my COPD. Learning to breathe when your stomach is causing enough pain to double you up is hard enough without other things joining in as well. I know I am still in the early stages of this trial of the Psyllium, but it just shows how even such a small thing as adding something organic to your diet, can actually be the route of huge issues. If it had been suggested by anyone other than a doctor, I know that I wouldn’t have even tried it. I have had similar reactions over the years to so called cures and remedies that I have spent money on only to find that it made something else worse. Despite the fact that the Psyllium is working, it has also made me even more reluctant to try anything else. I am only happy to keep taking it as there is one huge fact, I have to go to the loo, if I don’t, well the outcome isn’t pretty.

The peppermint oil is already history as without a doubt it was making me vomit and was causing heartburn, something I don’t actually understand as it is used by some to cure it. My body is fighting so many different things and I live on such a fine balance that I also live constantly in fear of upsetting anything else. Multimorbidity is a horrible word and horrible thing to live with, but there doesn’t seem to be a specialist anywhere that has the ability to understand my selection of conditions and how they affect each other. Something that doesn’t surprise me as I am still learning exactly what it means and what is happening to me. I guarantee that is a complaint you would hear from every single person who equally have their own selection of conditions. We have moved on beyond living with a chronic illness, I never realised that you could, but you can, and we have.

Read my blog from 2 years ago today – 11/06/13 – Mysteries and problems

I have just come off the phone from my electricity company who were supposed to be here yesterday morning to check my meter. I know some might say that as I am housebound it didn’t inconvenience me in any way, but waiting for things that never happen is really annoying. I had at first a problem getting a morning appointment so I waited…….