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……

 

 

 

 

 

Hospital recall

I forgot to say yesterday that I was at the hospital this morning, so everything is out of sink with my normal routine. I had to go back and see the Gastro brigade, as I already knew they are saying it is all down to my MS, but they now want to do further tests. I have to have another endoscope this time from my mouth down, when I had the last one I said to Adam that it seemed strange that it was a colon only as the worst of the discomfort was at the top end of my abdomen rather than lower down. They also are insisting that I have to see a physio therapist so at least 3 more hospital visits as they also want to see me in 6 months. I got up this morning telling myself that this would be my last trip out and that I would get the hospital out of my life again as it has been for years, once again I was wrong and my life is still in their hands and at their call. Yes I am a little pissed off by it, as they have said clearly to both me and Adam that there really isn’t anything they can do, but they have a need to tinker around, expecting to find nothing and to be able to do nothing, but they have me in their system so they do it.

Once again they weighed me and although I knew my weight had gone down, I was surprised to see that I have lost another 6 kilos, although the doctor didn’t mention it, but I can only see this as further evidence that I am not absorbing all I eat, I did mention in passing that things have passed through me as they entered and occasionally bring back undigested food, but he went past that as fast as I did. Adam again asked about my gallstones and again we were told that they don’t think there is anything to be achieved by removing them.

I am again wiped out by my morning trip and angry as I am so far our of line with my normal day and for what? No matter how often they take me out and bring me back on the horrid stair walker thing makes me feel sick for hours. I tried this morning not having breakfast as I though that might help. I don’t think it made any difference at all but it was worth a shot. It was actually a good thing I didn’t as although yet again I had been told they wouldn’t be here before 10am, they were here just before 9, so it I had made my breakfast, I would have been eating my porridge and wouldn’t have had time to finish it. We were once again left sitting for ages waiting for the ambulance to bring me home, making it back here for just after 12. The getting back and forward to the hospital really is an ordeal that when you simply talk to the doctor, with no examination, as I said a few days ago this could have all been done on the phone, one day maybe, but I doubt their systems will ever advance in time to be of use to me. Hospitals seem to take for ever to adapt to new thinking and for now, it is a step too far for them to realise everyone has a phone these days. My energy is now close to zero so I guess I have to head to bed and get the sleep I need.

Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens. It is sudden and complete, in seconds everything changes, I am exhausted, feel physically ill with it, as in a bit sick, dizzy and feeling a little like being drunk but I’m not. The only solution is to go to bed, which can happen anytime from 8pm to 9pm, just depending on how bad it feels. I lie for just a few minutes feeling worse and worse before suddenly going to sleep. It is incredibly hard to spend all my daytime alone and them not being able to stay awake when I do have company. What I don’t understand at all is the sudden change, I am honestly really awake and feel as though I could easily stay up until 10 or 11, then there is this crashing out, like I jumped of a cliff or something. It never happens during the day, although I sleep for a couple of hours every afternoon, then it is a more normal gentle slide into feeling tired and then tireder until bed is my selected solution, normal if you like.

Last night was the normal, to be honest I could have gone to bed earlier than I did but I was waiting for Adam to come out of the shower. By the time I did get there at 8:45 I felt as thought I was almost ready to be crawling rather than walking. As normal the 11hrs of sleep felt like seconds and when the alarm pulled me into being awake, I struggled to let the night go. In the last few days I have read loads on sleeping patterns and those connected to all and any of the conditions that I have, but I can find nothing that is the same as how I feel. Those who have been reading for a while will already have realized that there is one thing I hate more than any other and that is not having a reason for something. I suppose that is understandable having spent nearly 20yrs fighting to have a diagnosis of my MS, but it just niggles and niggles at me all the time. So if any of you have the same problem I would be interested to hear from you as I feel kind of alone at the minute with this problem. I don’t like alone, lol.

My stomach is really bad in the last couple of days, more and more pain, bloating and discomfort, although the letter that was read to me over the phone has arrived, I haven’t received an appointment yet. The letter doesn’t seem to hold out much hope though, the final line she says she isn’t sure if they can do anything to improve my symptoms due to my MS, I still want to talk to them again as I want it in black and white if you like, that all my symptoms are due to my MS and if there is anything, even something small, that can help I am willing to try.

I phoned to book the ambulance for the 8th when I am going to the pain clinic and nearly lost it on the phone when they told me they couldn’t supply a two man team with a stair climber to get me to hospital before 10am. Every time I call them the rules seem to have changed and I thought that this would mean that I would have to make yet another appointment and wait yet another 6 to 8 weeks. I booked the ambulance then called the clinic to find to my relief that they were fine about it. Although I am meant to be there for 9:15 they do now allow for this when you are being brought to clinic by hospital transport. What is now worrying me is that they said there are only 4 slots where you can book the stair walker each day, so I am now wondering how long I will have to wait to be brought home again. I really don’t think they understand the stress of these constant changes and uncertainty cause for people who are ill. After all they are there to supply a service and the simplest thing to do I would have thought is to inform the patients clearly of the rules at that time, as well as to tell the clinics, after all they should have known the situation when they gave me the 9:15 appointment. I foresee another day of things going wrong!

Pain Clinic or not

Right now I expected to be having a shower and getting myself ready so that I would be ready to go to the pain clinic, yes you have guessed it, I’m not going. It isn’t my choice but not long after I finished yesterdays post the phone rang, it was the ambulance service, they had been sorting out the routes for today and realised that I wouldn’t be free from the clinic until after the service had ended for the day. Apparently it was a new member of staff who had taken the booking and hadn’t realised that it was outside their working hours, somehow I don’t believe that, if I had a penny for every time that excuse had been used by a company well as they say I would be a millionaire. Clearly I have had to call the hospital and get an appointment that is within the normal hours, this means that I now have to wait 10 weeks to the 8th of February. I was at first annoyed and disappointed that yet again I have wait, but at least they noticed and worked it out before I was left sitting in the hospital with no way home. On the upside I though I am glad in a way as I would rather be going there feeling a lot more like me than I do at the minute, it’s really hard to make myself understood by strangers when I am having problems getting my own point across to me, without trying others too.

I am so lost this week as to what date it is and what is happening when, I had booked a slot just before Christmas for the final shop, I thought it was for Tuesday next week, I have a little calendar on my desktop and I suddenly noticed that next Tuesday is Christmas day, I actually have the slot booked for Friday, all kind of silly as I could have just bought it all and had it delivered last Tuesday with everything else I bought. I just have no control over my mind at the minute, no ability to even hold onto what day, month or anything else it is, I haven’t even sent the cards to my family, I’m just so confused about all the normal things in life, the day to day ones. I am loosing my grip on them is what my mother would say, and even though they are her words, I have to agree with them as that is how it feels. I am loosing my grip on the realities of simple everyday things. I never seem to know what time it is, despite there being a clock on my desktop, and without my spreadsheet I would get totally lost, but that only keeps me in line with what I do here, and all the things I do on line are taking more and more time, not just a morning but a day, well at least the parts of it that I am awake for.

It is a strange world to live in and a strange place to be not knowing, not understanding and not being able to do today what I did last week or the one before. Concentration, that is the biggest issue, not just when I am trying to write but even in the last couple of evening when Adam has been trying to talk to me I have got lost, not heard what he said or understood it. I cover it and move on because I’m embarrassed, being a lost confused mess when you are alone is one thing but when others are here, totally different. The other day when Jake was here I kept loosing it, I kept trying to keep up with him and kept trying to say the right thing. I know that everyone knows what is wrong with me, but it doesn’t stop me wanting to be who I was, especially to those who knew me when I was me. When it is just Adam and me, well I don’t stutter so much, I joke about my lost words and shut up when I can’t keep going, all those things to others seem so wrong. So I sit there winding myself up and making a bigger mess with each word, getting more and more embarrassed and more and more muddled.

I sometime wonder if the fact that so many people in my position loose the friend they had, not just because they slowly get fed up coming, but also because we push them out as it is easier to exist in a smaller more controlled world. One that means we don’t have to worry what our bodies will do next, what amazing, ridicules and stupid thing it will embarrassed and humiliate us with. I don’t think I did, but I can’t be sure, there is a nagging doubt that says maybe, just maybe I did.

Racing time

Good morning world! It’s Sunday again and for once I am listening to the TV not snoring as Adam is actually asleep in bed not on the settee. There has been no change in my chest, just as clogged up as it has been for the past few days, I have to say that my suspicions about my meds seems to be accurate, I have no chest pain or sore throat as I always remember having in the past so I am at least grateful for that if nothing else, plus I have in the past few days gently moved the time I take my meds in the evening back bit by bit and I do feel better in the mornings. I guess I was right that they are waring off faster than they used too. I remember clearly being able to go 14hrs from one dose to the next but that isn’t happening any longer it is a much tighter window. I will have to phone the ambulance service again on Monday, I hadn’t realised until last night how fast this month was passing me by, I have an appointment at the pain clinic on 20th which I thought was still weeks away then I realised last night that Christmas was days away not weeks. I have a pile of forms to fill in for them as well, so I will have to get on with that rather than just leaving them sitting on my desk with things on top of them. A year ago I would have gone mad at the mess I now put up with on top of my desk, I’m not sure what I thought might happen by ignoring it, but it didn’t go away that is for sure.

I am still in two minds about this pain clinic thing, I have heard so many negative reports as to what they can do to help and I have no idea short of more meds how they think they are going to change things for me. I have no faith in any therapy or relaxation systems, over the years when I had no diagnosis, I tried a lot of things and not one of them helped in the slightest. I am only going because the nurse said one thing that clicked and made me think it was a good idea and that is that most GP’s are reluctant to prescribe strong meds, but if a consultant prescribes they will go ahead with it. I am hoping as well that they may actually know of other meds that may be my GP isn’t so aware of as he doesn’t really deal with MS, fibro and so on that often. I don’t want to be drugged up with meds that make me fuzzy or make me sleep all the time but I do want to be able to live without pain beyond reasonable. It’s a little odd to measure that for someone who doesn’t live with constant pain, but there are levels that are livable, as I am under no illusion that I will ever be totally free of it, the damage done is too vast for that, just better relief is what am really looking for.

Teressa has now changed here wedding date from January to March, I wasn’t that surprised that they had to move it as no Government department moves that fast. Jon is still waiting for the immigration dep to OK his fiance visa, although both of them are still hoping that he will be here for January, it was more that they realised that with people coming here from all round the world, who have to arrange travel and accommodation that it was all getting too close with no guarantees. I already have 2 wedding invitations from them so I expect this will mean a third to follow soon. Luckily when Teressa booked everything she was very upfront about that the date may need to be flexible so none are charging her any more than she has already paid. It may not all be going to the plan that they dreamed would just open out perfectly but it proves I would think to the departments concerned that they are seriously in love and not just trying to get him into the country. From what Teressa has said to me there is even a chance now that he could have a job at Sega UK, completing the circle as it was at Sega US that they met originally. I still haven’t really settled in my mind that she is now living here in the UK again as she has lived abroad for so long it just seemed the natural place for her to be. When ever she phones I have that flash of what on earth is this costing, as she calls on her mobile and then I remember again that she is in London, just a few miles away compared from the thousands that used to be between us. She is hoping to come to Glasgow in January this time with Jon, so that she can introduce him to everyone, it will be a really strange thing for me as I have never in her entire life met any of her boyfriends, nor did I ever meet her first husband. I hope this visit happens when she has it in her mind to be but we will see, I have though totally come to terms with not being at her wedding, as much as I would like to, it is just all too much.