Just Another Miserable Disabled Day

This is something I was sent by a disabled person suffering daily from the daily onslaught of not only her ill health but also having to deal with  the heinous cruelty of the Welfare Reform

My conditions affect me in many ways from tiredness and exhaustion, pain and discomfort, problems with my eyesight, danger to myself and others and my continence and vomiting problems. It makes everything I do difficult for me and on very bad days I will be bed-bound and housebound as I will find myself too ill to do anything. On the very rare occasions I am able to go out I have to be accompanied, guided and assisted at all times to be sure I do not cause damage or injury to myself or other people. I do not go anywhere without supervision and guidance as this makes me very nervous and anxious, and means I have to have someone with me all the time. I lack confidence and get scared when going out due to my loss of peripheral vision in both eyes. And my loss of some central vision in my left eye which causes what I see to be very distorted and blurred. This has been something I have never come to terms with. I have frequent accidents, trips and falls on a regular basis, and cannot cope on my own in unfamiliar and familiar places. This even causes me problems in my own home as I walk into door-frames, settee arms, the washing machine and tumble dryer, tripping on threshold steps etc, as these are outside my fields of vision. The only reason I would specifically leave the home would be to go to hospital or doctors appointments and I would always have someone with me to do this. I also do not use sharp knives or hot objects due to the danger I can pose to myself and others because of this, as I lack awareness of hazards. If I am able to eat I have very basic foods which do not need any preparation and cutting or are ready prepared, as I do not like using knives or anything that will be hot because I will cut or burn myself. My sight problems also mean that I suffer from night-blindness which means I cannot be on my own at night and need help if I need to get up in the night for any reason and need a light on to be able to see what I am doing. I also have problems with colour and depth perception. For this reason I do not use steps as I am unable to judge them properly due to being unable to judge the size of the step and the merging of colours on them. Also, due to my colour problems I need help so I know that the colours I am wearing match and I do not have any stains or marks on them. I do not wear clothes with buttons, as I cannot manage these due to my sight, especially if the buttons are the same colour as the garment as I cannot see them. I do not wear shoes with buckles or laces as I cannot manage these either. My life is far from what could be described as normal due to the multiple medical conditions I suffer from. They have got progressively worse as time has gone on. I suffer from Stage 4 renal disease which makes me very tired and unable to undertake any sort of activity. This includes housework which my husband does. He also does the washing, cleaning, cooking and shopping as well as working in a full-time job. I am currently being worked up for placement on the list for a kidney/pancreas transplant. However, I had heart scans done recently and I was discovered to have an unknown problem with my heart. This requires further investigation with an angiogram and will need to be resolved before I can go on the transplant list as I will be too weak to withstand the operation otherwise. All the time I am waiting for these things to happen my kidneys will become progressively worse. My continence issues mean I frequently soil myself without knowing. This can particularly happen if I break-wind and soil at the same time. I do not always realise this has happened until I either go to toilet later for a wee to find I have already done this, and therefore have emptied my bowel, without any control over it, in my underwear. This happens on a regular basis, at least once a week. When it is particularly bad, up to 4+ times a day, when full bowel movement without control occurs. The only small advantage is as I am mainly housebound I do not suffer unnecessary embarrassment due to the fact that the only person with me would be my husband rather than someone I do not know which would be extremely difficult for me to deal with. If this happens to a stage where it drains me of my energy and leaves me exhausted I can go to bed and rest. I am on the highest dose of Codeine Phosphate, but I am becoming intolerant to it and I have been told there is nothing else I can be put on so I am unsure what the next stage for this is. When I am vomiting I usually do it over myself as again, this is something that happens without warning. When this happens I get no benefit from my medication as I bring everything up. This leaves me very weak, especially if it happens several times in a day, which it does frequently and I have to go to bed and rest. Also, if I am very ill I do not have the energy to do things like dress, wash or shower as I am too exhausted to do so. The only place I can be then is in bed resting. Walking is very hard for me as due to my extreme fatigue I suffer from great pain in my lower back and weakness in my legs. On the worst days I cannot walk far without being in excruciating pain and legs that feel wobbly. On other days I can walk a little but not very far. Just a few metres before I have to stop due to breathlessness and tiredness as well as pain. It is not nice to suffer from multiple conditions that have such a significant effect on your life. Coping with them is very hard at times. It is very upsetting and debilitating without control over them. It means I rely completely on other people to help me through it when I am having a particularly bad time. I am glad that I have the support of my husband and family to do this as without them I do not know how I would cope.