Too ill for basic care

If there is one thing throughout my entire life I have hated, it is being proved wrong. I know it’s bigheaded to believe that you are always right, but when it comes to my own body, I thought I had, at least, one area of speciality that no one could argue with. I was daring to think that after 4 days of almost peace, where my pain levels had slowly begun to settle, that the bad spell, was on its way out. Last night, proved me wrong and it did it in style.

I had spent a very uncomfortable evening sat on the settee. Adam had to fetch me some of the antispasmodic the doctor prescribed for me just before 8 pm, as my stomach was tied in loops. I’m not really sure if they helped or not. Yes, the sharper edges of the pain was reduced, but they brought me no comfort what so ever. It is now my third time that I have tried them and compared to my worst spell, they worked miracles, but compared to me average, they did nothing. He has prescribed Buscopan, which is a very common drug for IBS, something I don’t have, according to the tests run by my consultant the last time that I saw him, despite the fact that I have all the symptoms. As always when I am unsure about the effects of a drug, I give it a quick Google, just to see what their effects are supposed to be. It was totally unhelpful, but I had to laugh at the final line in Wikipedias synopsis “It is also used to improve a death rattle at the end of life”. What on earth has that got to do with bowel and bladder problems? So many drugs seem to have some other odd usage, but at least, I laughed. What I did find out though has made me wonder if I should be taking it at all. Apparently, it shouldn’t be taken For “certain conditions when there is reduced bowel activity”, but it totally unhelpfully doesn’t say which ones.

By the time I went to bed at 9 pm, I was delighted to be there. Sleep had been dragging at me for what felt like forever. My stomach was in a mess, with pain showing up all over the place and there were area’s that felt as though they were being badly stretched. Experience was telling me that sleep was my only option for peace. Within seconds of lying down, I feel into a deep sleep. 11:30 pm found me awake, drenched in sweat and in pain, really bad pain. As I sat up, I knew I was going to be sick and that I had to move as fast as I could. I took a risk, a huge risk and left my wheelchair behind me, as it would do nothing but slow me down. As it turned out, it was a good decision. With a wrench, that came from somewhere around my waist, I started to bring up my last meal, eaten at 4 pm. Just as has happened in the past, as I was being sick at one end, urine was leaving me at the other and there was nothing I could do about it. I did what I could to tidy up, but my entire body was shaking, I felt terrible and I had used what little strength I had pushing myself to my feet. I had grabbed my dressing gown, which was lying over my wheelchair and had brought it with me, as I wrapped it around me, I sat on the loo to do two things, gather myself and to try and empty what remained in my bladder. It was after that, that I called out for Adam.

I had staggered my way to the bathroom door, fighting the pain with every step. As I reached it, there was Adam. The sudden vision of him standing there waiting for me, listening to me throwing up, started the shame meter. He sorted me out and took me in my wheelchair, which he had fetched long before I called, through to the kitchen for a cigarette and to give me some much-needed liquid. I sat in silence while he cleaned up the mess I made in the bathroom. Once again, I was in the horrid situation of knowing my husband was having to clear up my urine. If there is one thing on this planet that will strip you of all embarrassment, it’s shame, and I had it in buckets. It doesn’t matter how ill you are, whether or not it is out of your control, or any other fact you can think of, you still feel that shame. When Adam returned to the kitchen, I didn’t know how to look at him or what to say, other than “Sorry”. To make matters worse, as I put out my cigarette, I hurtled once more for the bathroom and doubled the amount I brought up and the mess he had just cleared.

This morning, I still feel terrible, but that’s not new. My bowels moved without pain or issue and the pain in my abdomen is still there, just as it was last night, last week and last month, but not at bad as it was last night. I don’t feel sick, but Adam and I have discussed it and are in agreement, I’m not going to eat today, just lots of liquid. I’m also going to put a large measuring jug that I have, into the cupboard in the bathroom. Hopefully, if this does happen again, I will be able to grab it, so I don’t leave myself feeling shame, just because I’ve been sick.

I don’t have a clue what else I can do, other than speaking to my doctor again on Monday. Whatever is happening down there in my stomach, is getting worse. When you are housebound, your options diminish dramatically. If I could get down those damned stairs, I freely admit that I would be now sitting in the emergency room at the hospital. I would be there, just so a doctor could check my abdomen to be sure there is nothing they can find that could be causing it. I would be there, not because I feel this is an emergency, but because it would put my mind at rest that I’m right. I can’t get down those stairs, so I’m stuck here. To get to hospital, I would have to call 999 for an ambulance, but I don’t believe that I need that type of attention. Doctors don’t come to your house these days, not for anything, not even when you can’t get to them. So I’m stuck, I can’t get that peace of mind, I just have to wait until I can speak to my GP and that’s not until Monday. Somehow, I doubt that even then, will I actually see him, or any other doctor, which is wrong as if I could get down those stairs, I would be in his surgery, not on the phone. My chronic illness has led to the situation where I don’t get the basic level of medical care, everyone else takes for granted. How can that be right?

 

Following a couple of comments, I just want to make clear that the point I am making is that being housebound, singles you out. Society has set up systems that work for the majority, and I don’t want to be treated any differently, just allowances made for the situation my health has left me in. If what is happening to me right now, was happening to you, you wouldn’t call an ambulance, you would simply go to where there is a doctor you can see, something I can’t do. The barrier of being housebound, is a barrier to my getting that basic care, that everyone else, takes for granted. On top of all of that, the cost to the NHS of my calling 999 for an ambulance is huge, followed by the cost of another to take me home again. This is one of those gaps in the system, one I have fallen into. 

 

Please read my blog from 2 years ago today – What’s missing….?

I woke this morning as exhausted as I was when I went to bed, but at least, I woke once more pain-free in my back but not quite so comfortable in my lungs as yesterday. So pushing myself to have my shower just after Adam went to work, well might sound rather odd, but I am hoping that if I push myself this morning to stay up to time with my normal routine I will be able to have my full 2 hours this afternoon, rather than a short nap followed by a difficult shower. It often feels as though……

 

 

 

 

 

One big let down

Why is it that my body never fails to let me down, at those very seconds that I need it to just be normal. I have been trying so hard to convince Adam that I am more than able and perfectly safe to be on my own. Proving it over and over by navigating perfectly my way through the house, so perfect that I haven’t even been touching anything other than the floor with my chair for 2 days. Then last night, just as I was getting organised to go to bed and with him standing just beside me, my right leg had a fit. All by itself, there is was jumping around like a lunatic, and he was stood there watching it, as I stutter and slur my way through a request for him to put my dressing gown in the bedroom. It was that half of thought of a request that triggered the whole thing.

This sort of thing happens all the time. If I am in the middle of doing something, then suddenly think of a change of plan, that hesitation in my thought, no matter how tiny, is then translated all over my body. I had been about to get into my wheelchair when I spotted the dressing gown lying on the other settee. My hesitation was on whether or not to pick it up myself, or ask Adam to do it for me. Bang, my body went nuts. First my right leg, the nerves making it literally jump up and down, with only my toes touching the ground. Then my voice, stuttering through a mix of words that don’t sound come out quite right and once more just get abandoned. Then my right arm, which I raised to point at the gown, held steady in front of me, I thought until I looked at my hand. Finally, my left arm was groping around in the air trying and failing until I looked at it to find the head of the bronze dog, in the hope that it would steady me. Both Adam and I have witnessed outbreaks like this over and over. It is like my brain can’t deal with the fact I had started to do one thing, then thought about doing something else instead, but decided to return to the original plan. All those thoughts are just too much for it, so it short circuits, then takes all the thoughts and actions, mixes them all together before just spewing out some nutty mess instead. Not only is it annoying, it has also frequently been embarrassing as well. Like so many parts of this illness, it’s OK when you are alone, a little upsetting when with your family and totally devastating in public.

Bodies are upsetting and annoying things. I once thought that they were simple straightforward and just there, but illness has taught me that they are none of those things. If there is a way that they can let you down, embarrass you or just spoil a moment, they will. If you have something like PRMS or Fibro, you don’t stand a chance. One second everything is calm and normal, the next you are a jibbering wreck and worse still, you are proving it to an audience. From falling flat on your face in the street; sitting in tears during a board meeting; standing shaking like a plate of jelly in the middle of a presentation or sudden cramps in you legs when making love, mine has done them all. It doesn’t matter how well those around you are aware of your health or not, there are still times and places for everything. None of those times or places was correct. At least last night I was able to stay standing on my feet, but that was the only positive that I could find. Adam had picked up my dressing gown and headed out of the room, I was sat in silence in my wheelchair, with only one very familiar thought, why now? The longer you live with chronic illness, the more it becomes clear that it really is some sort of sick joke. Worse still, the joke is on you.

Tremors have been to date another one of those phasic things. In fact, I went through one period that lasted over a year. I couldn’t keep my left hand still unless I thought about it. If I was just sat, talking or watching TV, you could be sure that my hand was sitting there quietly either shaking or jumping up and down. Thought would steady it, not stop, that only happened if I gave it a task to carry out. It lasted right up to the day that my hand died. I have often wondered if it was, in fact, part of the process. First minor nerve damage that caused the shakes, then total cut off, leaving one dead hand. As my hand returned, it wasn’t totally steady and still isn’t, but unless someone pointed it out to you, I doubt you would notice it at all. For me, normally, the worst tremors are still in my hands and I notice it most when I am typing. Ironically, until I started blogging and tweeting, I don’t think that I have ever typed quite so much. Again though, it is that hesitation, that shows it up the worst. If I just sit here and type without thought, my fingers move perfectly normally. If I catch the wrong key and I have to think about its correction, then my hands are off. The only answer is to totally stop, rest and start again. Like much of my health just now, the tremors are now just another one of those things that I live with. I don’t think there is a single symptom that is any longer phasic, they all seem to be here all the time. Unless, changing almost hourly counts as phasic.

I know that it is often a personal choice, as to the point at which we give up work, or even become housebound. But I can see how someone could quite easily be pushed into one or both thanks to just one symptom, not major events. For me, my dead hand forced me in, growing fatigue and exhaustion, held me here. But tremors could so easily be that one thing, that is just too embarrassing, to live in the outside world with. I know, even from just having one shaking hand and a problem with core stability that meant my spine twitched, that people stare. If I had been out somewhere with so much of my body in a muddle as it was last night, I would have been mortified. If it was happening all the time, it would drive many into wanting to hide. I somehow don’t expect that the new tests for benefits would accept that severe tremor attacks were a reason not to work. Knowing what it is like when people stare or are clearly talking about you, isn’t easy to live with and many people, not quite as adamant to continue as normal as I was, would struggle. I don’t know how long I would have pushed on trying to work if my hand hadn’t gone when it did. To be honest, I doubt I would have been working for another three years as I did. I was lucky, my job could be done from home and at home, I could pace myself to get everything done, resting when I needed to and working flat out when I had to. For most people, that just isn’t possible.

The twitch in my spine is probably the most visible symptom I have ever had. It’s hard to cover up when your upper body is jumping around, not dissimilar to a bobble head. These days it seems to be at it’s worst when I am tired and I have learned tricks so it isn’t seen. I can wedge myself into the corner of seats, which braces both sides of me. Lean forwards, propping my head on my hands, anything that just gives me that bit more support and stability. But people looked. The rude ones stared and chatted behind cupped hands, the slightly more discreet pretended to be looking elsewhere, then looked back as I moved my gaze off them. That is where that walking stick or wheelchair come in useful, not just for getting us around, but if you have either, the curiosity seems to wane. It’s really odd, give us an aid and the public dismiss us as ill. Let us alone, and we are nutters, lunatics and any other derogatory name you might think of, an object of amusement. I recommend strongly that what every your illness if there is a visible component, carry a walking stick, needed or not. Not only do you get a seat on the bus, but suddenly we are given a polite space to move and time to do what we need without angering anyone. Even if you are fumbling for change at the supermarket, that walking stick stops those sighs and huffs, it really is magic. Unfortunately, there is always the odd person who is never going to have respect for another living being, all we can do is ignore them.

I know that we have no option other than to live with the body that we have. No matter how annoying, how often it lets us down or embarrasses us, it’s ours and we have no other choice than to live with it and give it a little love every now and then, tremors or not.

Please read my blog from 2 years ago today – 02/10/2013 – Slipping into oblivion

Sometimes it feels as though I just don’t have the energy to do what little there is in a day to do, I mean how hard is it to just go and take a shower and wash my hair? Impossible apparently. It doesn’t seem to matter how….

Stupid embarrassment

Over the last few weeks I have been having more and more problems with my bladder again. It is something that I have the solution here in the house but I avoid using simply because it is a fiddle and strangely one thing that I have never been able to get my mind to accept as a solution, rather than a problem in it self. I suppose we all have the one thing, that monster that hangs around and we do everything we can to avoid, mine is catheters. Bladder problems are actually one of the most common problems that MS causes and for some it is actually one of the first symptoms. For some reason you are both incontinent and unable to empty you bladder. I know that is a combination that doesn’t instantly go together, as if you are incontinent you would think it would empty with ease but what happens is you will leak, often just a few drops sometimes a slow stream, then when you get to the loo, it keeps stopping and starting, often just slowing right down and you can sit there for 10 minutes with that process repeating itself until you are sure it has to be empty, until you stand up of course. The bad news is that even then there is probably a lot still there hiding. For a long time I just got on with it and did my best but then I started to get frequent infections, that was the point the NHS took over.

I actually had to spend a week in hospital learning how to insert a catheter, one week, it was nuts. After my third attempt I was ready to go home but no, I had to stay a week. My input of fluid had to measured against the output or urine and they wanted to watch me for several days using the catheter so they were happy. Now I doubt you have ever had to have a nurse with you when you want to go to the loo, their faces within a meter of an area that not many have ever seen, coaching you. I can tell you now I would still have a full bladder if it hadn’t been for the catheter, as it was simply embracing. To this day it is still embarrassing although I don’t have the nurse with me the whole process causes embarrassment even when there is no one here.

If you haven’t see a self catheter kit you probably won’t understand how they could possibly be but it is. The new packs aren’t as bad but at firs they were a horror, I had to take with me not just the catheter but wipes as well, there was a constant worry that someone would see them. To use them you had to open the seal, add sterile water from a bottle you also had to take with you, then wait for 5 mins for it to activate the gel, which lubricated them. Then wash you hands before inserting the catheter, empty your bladder, then try to dispose of all of it so no one saw all the pieces. This all meant that from start to finish I was in the loo for nearly 15 minutes, that is a long time, that alone to me was embarrassing especially at work. The new packs are smaller and contain the water already so the prep is cut in time and there are less things to juggle and hide, but even at home I feel this need to ensure that they are always hidden.

I know I have to get over this as some point as well the future will means I will have no option not to use them, but even Adam collecting two months worth from the chemist is, you got it embarrassing. Although he knows all about them I still want to hide the whole process and find myself, lifting rubbish in the bin so I can hide the used packs and the huge boxes under it, as I don’t want him to see them even in there. I don’t understand how I can sit here and write all this but the thought of going right now and using one fills me with dread, because I then have all that palaver to go through. Stupid, stupid, stupid I know but I can’t get past it. It’s 8 or 9 years since I first started using them and stopped just as quickly. There use is now when I have no other option, stupid because it puts me at risk of infection. Infections that put me in real risk of illnesses sever enough to put me in hospital, as my body wouldn’t cope with it. I should use them 3 times a day, but knowing what could happen and the risk I take by ignoring it, just isn’t enough to make me grow up and admit to myself, properly, inside where it matters, that no body cares other than me just how embracing it is. So what if another part of me needs intervention, I guess just me.