Observation

Posted on November 8, 2014 by livinginalimitedword

I know I was out of the house for only a few hours on Thursday, but there were some things that struck me, things that you don’t see or pick up on from TV. In reality this is my 7th year of being housebound, during which time I have been out a handful of times for hospital appointments, all have been at the hospital less than half a mile from our home, but distance means nothing as I still required the ambulance service to get me out of my house and to my appointment. The system at the Victoria is very different from the Dental hospital, at the Victoria once you have seen the doctor you are taken to a closed weighting room, to wait for you pick up to take you home. Being locked away for most of the time you are out, means you don’t see people, the average everyday people that we all expect to see in our daily lives. On Thursday, I wasn’t locked away, I was sat where I could see everyone coming and going, patients and staff alike. I think it was within our first hour of sitting there that I had to ask Adam a questions, I had noticed to my surprise that the majority of the people I saw, including the staff, were all severely over weight, my question was quite simply was this average or was there something odd about the groups I had seen, Adams answer was average. To that point, I hadn’t really understood just why there was so much on TV about obesity and nutrition, in fact I did write about it the other day, but honestly, the difference in seven years is scary, I now fully understand why the medical profession and government are so worried.

That is one of the problems of being housebound that I hadn’t fully been aware of, or even felt happening, I am now locked in a time warp, yes I watch more news than the average person does, somewhere in the region of 4 hours each day and I have even learned an amazing amount about politics and history, that I never had the time to in the past, but I actually don’t know what the real world is like any more. Just like the appearance of an entire motorway and the changing shape of the human body, I haven’t been out there to see any of it, the world hasn’t stood still for seven years, I have. I was always a great people watcher, happy to be almost anywhere alone, as long as there were others to watch and a world to take in, I was happy. In a strange way I still thought that I know people and understand what drives and fills their lives, much of it I am sure has and will never change, but clearly the world out there is no longer the world I knew. No matter how much TV I watch and how much Adam talks about the real world, my view is time warped and things that I thought were just Adam, like never being apart from his phone, was proved to my yesterday to a culture, not an individual change. Something major has changed and possibly my time-warp actually allows me to see what is happening in an odd way, putting together what I know of people and based on my own life.

Our nations changing waist lines I think can be pinned on just a few things and I will straight away put the blame on two things, the recession and technology. As mad as it sounds, I know that when ever I was short of money, I put on weight. The why is simple, the fattening foods are often the cheapest, you buy cheap and filling foods, rather than the more expensive healthy smaller portions, we want to see our baskets bulging, not just slim pickings. On top of that we will eat anything left by our kids, as throwing it away is a waste, just as throwing out those items that are going out of date, we stop seeing it as waste food, but as a waste of precious money. My age group and older will still have the “don’t waste because you don’t want” mindset passed onto us by our post war parents, I found it hard doctrine to brake, add in no money and the pounds roll on. Technology gets the next built, sitting has become our pass time, TV, PC’s and even phones now stop us from doing anything else, how can you live not seeing the next meaningless message on our phones. I don’t think I saw a single person yesterday who didn’t have one, even the medical staff, all had one clearly with them, people constantly checking their block of plastic. That time we keep saying we don’t have, to go on a walk or do something like swimming, is there in abundance if we just turned them all off. There is one other thing that I saw already starting when I was still out in the world, people were already not stopping, their lives where a constant rush in their cars, not on their legs. A rush between school, work and home, never stopping to cook a meal, to think what is in it and to enjoy the whole process of producing a family meal, then to sit and take time to eat it together. The fast meal on the hoof when each individual wanted it, no one eating the same thing, but each meal individual in every way possible, had already begun. The something ping meal had arrived, no thought, no planning, no attempt to control what they ate, just the fast microwave what ever the cheap stuff is, gone in a second longer than it took to prepare, cardboard filler had been born.

I don’t know why but one of the things that I thought I would see that had changed, was fashion, but it hasn’t. I didn’t see a single person who if they had been walking past my seven years ago, that would have made me look again. Jeans, leggings, mini skirts were all still there, just as the big scarf draped, rather than tucked in to keep you warm and all the other oddities of style, have remained the same. I know I wasn’t in a club or any of the places fashion are most visible, but ordinary was the name of the game, even in hair styles, usually the most visible statement. I know that fashion isn’t something I follow, but as a past watcher, I was disappointed. It was my hair that I noticed the most, having hair to below your waist, doesn’t work well with seat-belts on stair-climbers or ambulance chairs. It also caused one of the few laughs of my day as when I was being pushed out to the ambulance to go home, the wind caught it and throw it all into the face of the ambulance attendant pushing me and a passer by, turned right round to watch my purple hair fly. I will remember that moment for a long time to come, not just because the poor man had to untangle himself, but it was the first time I have felt the wind like that for far too long. My last few years of going out, were simply from home to work and back again, my hair just touched my shoulders by then, as I had given into convention and cut it. It hasn’t been cut since and I actually don’t intend to ever cut it again, even if the odd outing means I may loose several strands to strapping and men.

Seven years away from the world, people do change and I have just seen it, I saw yesterday just how damaged our lives can be by time and fashion. I live on line, I have no other way of joining in with the world, but I will tell you right now, if I could suddenly get my health back, it wouldn’t be spent watching TV, or connected to a phone. I am suddenly old fashioned, but I think I would rather be that, I would rather be part of a world that has time for people, the real breathing ones around me, before the rest of the world. Yes, I would still be here, I couldn’t give it up any more than I think others would give up their phones, the world has changed, but the old fashioned me, well I show that daily on twitter. It’s all about caring and sharing, about people and loving them, where ever they are or who ever they are, whilst not loosing sight of those closest to you, an amazing number of people seem to agree. Is it just nostalgia, or is it we all really just want the same.

Please read my blog from 2 years ago today – 08/11/12 – A plan is formed

It was and is pride that wouldn’t let me ask for help and my writing it all down, then posting yesterday with the knowledge that Adam would read, had the effect of me bulling myself, and it worked. Adam and I spoke last night and we are going to try something between ourselves to see if it will make any difference to……

A "service", it’s not

Posted on November 7, 2014 by livinginalimitedword

Right now I am already exhausted, but as I woke up that way, it really isn’t that much of a surprise. Yesterday was yet another NHS farce, not the medical side, no that was great, but it was once more the transport. They arrived around the time I thought they would and with the confidence that everything possible had been done here I actually left the house with some confidence and ready to just get it all over with and to get home again. As always getting down the stairs was horrendous, not being a fan of being flung around like I was on a fairground ride, the journey on the stair climber was hellish. I reached the ambulance feeling nauseous and without any of the brightness I had felt just 10 minutes earlier, the attendants as always were bright and chatty, but with the way I felt, just that bit too chatty. When you feel like throwing up, what you really want is silence and fresh air, what I got was endless noise and extreme heat and stuffiness once on board. They had allowed Adam to come with me, with the usual “well don’t tell anyone” attitude, but he was there with me, we had explained to them that I need him with me, as without him I get anxious and agitated, I had no fear that the NHS would see no physical harm come to me, but this is a brain damage and without him, well I doubt I would hold it together should anything unexpected occur.

We weren’t going straight to the dental hospital they had to pick someone else up and drop off before we went there. I don’t know if you have been in an old British ambulance, they use the out of date ones for patient transport and their suspension isn’t quite what it was, nor are the roads if I am being fair, it was a combination, but it bumped and swayed it way to the next pick up with me feeling more and more sick all the way. Pick up made and it was off to the hospital they were going to, but we hadn’t been moving for even five minutes when I had to ask them for some fresh air, oh and a bowl. Feeling sick in public is one thing, throwing up is another, it just isn’t something you want others to see, so I sat there fighting, not to hold on to anything as I hadn’t eaten my lunch as I knew what the stair climber could do to me, I didn’t expect the ambulance to be worse. Luckily the air did the trick, but I can’t remember feeling so relieved for a long time, when we finally got to our destination and I was being wheeled through to wait to see the consultant. As is always when you are using hospital transport, you are put to the front of the cue, that way they rush you through so that when they return you are ready to go and it was all going so well. Glasgow dental hospital is a teaching hospital and you always see a student first, they make their conclusions and then the consultant appears to give theirs, both concluded the same thing, I had had two ulcers, with no clear reason for their appearance which had left damage not fully healed as they could see what I could only feel. The consultant wanted me to have a new type of x-ray, I had never heard of, you sit with your head not tightly clamped, but enough to stop you moving, the machine moves round your head quite quickly and quietly, getting one long x-ray of all your teeth. Nothing was found, it is was just to make sure that there were no wells of pus waiting to come to the surface, the only thing I did actually fear as the skin is taking a rather long time to settle back to it’s normal shape.

They had completed the x-ray and we were just waiting to see the consultant when the ambulance returned to pick me up, they wouldn’t wait, saying they weren’t allowed to, but the receptionist was calling for a replacement to take us home. It was just after 3pm, so I thought no more of it and we chatted to the consultant about getting me on to the list of a dentist who would be happy to come to our home, I didn’t know there was such a thing, so I was happy of his help. I didn’t remember until today, I did have a dentist here about 5 years ago, who did come to the house and look at my teeth, but then I was so terrified of being carried down the stairs, I refused to go the hospital and have the work done, I preferred to just put up with my broken teeth. Stupid, I know that now, but well at the time I didn’t know about stair climbers and the last time an ambulance crew carried me down this many stairs, all I remembered was the feeling I was going to tip off their chair and fall the rest of the way. We returned to sit in the waiting room once more, having checked with reception that the ambulance was booked, by this time it was just pass 3:30, the start of what was going to be a very long wait.

The Dental hospital isn’t a hospital in the normal sense, it doesn’t have any wards and apart from a couple of emergency dentists there until 10pm, the whole place shuts down at 5:30 every night. Yes we were still there at 5:30, and 6:30, in fact they eventually picked us up at 6:45. No one at their control centre seemed to be able to give a straight answer, every call they made the answer was the same, they would be there within half an hour, over and over again, but each call had a new excuse as well. The duty nurse, the nurse manager and one of the dentist, all who should have gone home at 5:30 where stuck there with us, and each took turn to come along and talk to us for a short while. I have to say it was the consultant that I most enjoyed getting the chance to talk to, as there I was with a captive representative of the NHS, I had the chance to put forward my views and suggestions as to how both the patient experience of the housebound and the NHS budgets could be improved, with the use of a system like skype. In fact we spoke about a huge range of ways that the systems could change with more savings, rather than costs and even about the attitude of brushing those of us who don’t make their stats look good to one side. If we had to have a long wait, well that was the pure upside of it, as I really got the feeling that we parted with him leaving with his brain ticking over on things he had never thought about before, he may be a dental consultant, but it doesn’t do harm to plant seeds where ever we can.

The journey home was the total opposite from the one there, no being thrown about inside a juddering ambulance, well yes a couple of times, but not constantly, there wasn’t any discussion as to whether Adam could or couldn’t come in the ambulance with me, he was invited in and made as welcome as I was. About half way through we were sat at some traffic lights and I looked up to see a huge concrete object above us, I turned to Adam and said that I had never seen it before, he asked what and I pointed again. It is the not so new now motorway that passes over part of Glasgow and has been carrying traffic for four years, the last time I had been that direction they hadn’t even started on the foundations, I had been watching it’s beginnings a few miles west as both sections where on my route to work. Just seeing it truly reminded me just how much the world has changed while I have just been sat here in my living room. You know it’s happening, but somehow you don’t even think about the day to day changes that everyone who lives around me sees without even thinking about them as they are just that to them, every day.

By the time we were home I felt really ill, washed out and exhausted, but my day wasn’t over, I still had things to do, if I wasn’t going to make today hell as well. What should have taken me just 20 minutes, stretched itself out to an hour as getting my brain to work was hard, it just wasn’t wanting to work. Even when I closed my PC down again, I still couldn’t go to bed, something made me just want to sit in normality, in front of the TV doing nothing and thinking probably less. Not surprisingly, when my head hit the pillow my brain shut down almost instantly and remained that ways without any argument from the rest of me at all.

This morning, well I don’t feel much better than I did yesterday, I had said two weeks ago that going to the hospital wasn’t needed and was going to be more hassle than it was worth, I just wish others had listened to me. The only person who gained was Adam as he didn’t believe that the ‘thing’ wasn’t worth bothering with, he of course had decided it was something major, so I am at least glad that the truth is known and I was right. I though will be paying the price for several days I believe, as this journey to hospital has taken far much more out of me than any of the previous ones, I am not just fatigued or tired, a day sitting in a wheelchair with spasms being triggered due to the position I was sat in, has left me with muscles that don’t normally hurt, aching and internally bruised, both in my arms and my legs, my legs being the worst. Being unable to stretch my body all day, has left me with new lines of pain in my guts, everything that can ache from my hips to my shoulders is delivering varying amounts of pain and in many ways, I just want to disappear, even from myself. I am sure that those responsible for what went wrong yesterday, don’t have the slightest idea of what they do to people, what is the problem with someone having to wait for 4 hours, well if we were fit and healthy, none, but we need the transport because we are anything but. I didn’t put myself into their hands for a giggle or a little day out, I did it because I had no choice and I needed their help, what I got, well yes they took me there and back, but I just wish they could understand the damage now done and the time it will take to return to normal, maybe someone should put them through it and see if they think it is an OK level of service.

Please read my blog from 2 years ago today – 07/11/12 – Control of me

I took sometime yesterday to sit and think through what happens now, it is clear that somethings have to change as I really am getting worse and worse when it comes to all the cognitive issues. I haven’t spoken to Adam about this yet and I know he will read this tonight but I am hoping to find the spot to…..

Me or you?

Posted on November 6, 2014 by livinginalimitedword

I couldn’t believe it yesterday, I actually had a good day when I needed it. Today is the day that for the first time in nearly two years that I am leaving the house, nothing exciting, just my appointment at the Dental Hospital regarding the “things”. For me one of the major things about going to hospital is having everything here on line sorted out and running as smoothly as possible without me here, so yesterday was a day of doubles, a day when I not only sorted everything I normally did, I did today’s as well, well almost, the only things I need to do before I go, is this post and set up the photo’s to go out on twitter, everything else is done. I was shocked to find that actually doing double didn’t take me as long as I thought it would and this morning I feel so organised that I am at peace with the rest of the day, something that in the past I never really was. It is so much so that I am at the minute playing with the idea that I might just start doing the same on my good days, as it would allow me to have the majority of the next day just to play games and do nothing, something else that I think might just benefit me from time to time. I am though a little confused as to how I managed it and if I didn’t have a tick list to prove it, I would be double checking everything ten times over, convinced that something had to be wrong. So here I am showered and organised, all I have to do is put on some make up so I don’t look to horrific, tidy my hair and put on my shoes and I am ready to start waiting for the ambulance and the worst part of the day, getting down those stairs on the stair-climber, maybe it is a good thing that once again I couldn’t finish my breakfast. My appointment is at 2:30, but as always you have to be ready ages before as they can’t tell you when you will be picked up, just any time after 12 o’clock.

You would think that I would be looking forward to getting out of here, but just as before with the appointments I had a 18 months ago, I am no more glad about going anywhere than I was then. Right now I am pleased with myself and running ideas of doing double days, but if I slow myself down just a little and apply thought, the truth is that the next two or three days will find me drained and in rather a mess. Adrenaline is an amazing substance but not one that you can live on for more than a few hours. For now though, I am enjoying it, this is a feeling I haven’t had for a long time, that of feeling in control, even if it is a false control, it’s how I used to feel all the time years ago. In the last two years of writing I have come up with theory after theory as to why I was the person I was and what formed the person I am now, but the one fact is that word organised is the one word that ruled my life from childhood onwards, until my PRMS throw a spanner in the works. Chronic illness and being organised don’t work together in any way or any form. You can plan, set up routines and have everything lain out ahead of you for every day and not one of those days will ever be completed by the planned time, something, be it pain, spasms or exhaustion, will get in your way, which is why I am surprised by yesterday, it was almost to plan, just an hour out. What ever the theory, there is one fact that has become very clear to me and that is it is our personality type that has everything to do with not just how we manage our illness, but even to the point of how badly we are effected by it, right down to which symptom we find the hardest to live with.

For someone like me, in the early stages it wasn’t the pain that I kept going to the doctors about, it was the exhaustion, being tired all the time through my organised world into chaos, both back at the beginning and right through to my last appointment with my specialist, I wanted something to keep me awake. They did try, I was was put on Modafinil and eventually a really hight dose of it, I should if you read the ingredients have been somewhere up on the ceiling needing scraping back down as it is a form of what drug dealer here call “speed”, I would take my three tablet and half an hour later be asleep. It was me, not the doctors who took me off it, as I couldn’t see what it was doing, I did one of my weekend tests and felt no difference at all, so I ended it. If you are an organised person and you are unable to do what you always did in a set time scale, well sleep is the last thing you have time for and when the hours creep upwards and those you are awake for are spent wanting to sleep, it is the worst symptom, followed by dexterity and memory. Different people with identical symptoms would list those symptoms in different orders, I think this is part of the reason they say that MS effects different people in different ways. If you look at the lists of things that can be effected they are all the type of symptoms that clearly would impact on different lifestyles and people to different extents. Dexterity and my eyesight were essential as I loved doing fine needle point, bead work and embroidery, try picking up a seed pearl bead on the end of a fine needle when you can’t see the hole and your hand is shaking, it’s not something many people do these days, fine motor skills may not be noticed for a long time by many.

I have always had quite a high pain tolerance and I was never the type of person to let pain stop me doing anything, if I had I would haven’t have done almost anything in the last 20 years, plus once I had had several doctors telling me that I was fine, well I did stupidly accept it and I just got on with the pain. Don’t get me wrong I was more than grateful when they eventually started to bring it down for me, but this is the person who went to work where I had to stand for 4 hours, the day after spending the night in hospital with concussion and a broken ankle. I don’t think that it is so much the symptoms effects different people in different ways, it’s more we deal with and are effected by them, differently because of who we are, individuals. Someone who is less frenetic than I was, probably wouldn’t have felt their daily life being impacted as soon as I did, or even as dramatically. It is one of those things that doctors can’t take into account when they are trying to give us an diagnosis, or even prescribe the right drugs for us, as they don’t know us at all, which is probably the only part of homoeopathy, that I totally agree with.

So I am yet again about to go and sit in front of another doctor, who doesn’t know me, nor do they know anything about my medical history, to look at something that isn’t even there any longer, I so love our NHS.

Please read my blog from 2 years ago today – 06/11/12 – To tell, or not to tell

I haven’t shed a single tear and I have been up now for 4hrs, so I think I am on the right track again, I knew I would get there but well it’s hard to heal yourself when you know there is no true recovery. I am only guessing but I am sure there are thousands of people out there who have or will go through exactly…..