KNITMAN

November 1, 2012

WHAT MY DISABILITY MEANS

Filed under: Uncategorized — Knitman @ 3:41 pm

These are Whitney’s puppies at 10 days old. They are doing very well. I have to say that the underfloor heating in the sunroom is clearly doing these puppies very well. Most of the time they are sleeping apart from each other and certainly apart from their mother who they only go to when they want milk. They are also very quiet. Of course the sun room is a definite no-no if I had a spring or summer litter as they would definitely be far too hot. Even now that it is winter any son will raise the temperature to about 26-27°c.


I have had a rather strange week. I have spent most of it asleep. I have been getting up at 5:30 AM every morning to go for a swim and I am very pleased about that. You would not believe the difference it makes  to me. I feel that if I have done my swim whatever else happens for the rest of the day is perfectly all right. However, I did not expect that I would go to sleep! I sit down in my armchair to listen to some  music  and before I know it I have gone to sleep. Last night I also fell asleep in my armchair and I was so deeply asleep that John had to call me three times before I was aware that the phone was ringing! I went to bed and I still slept well.


 The house renovations are almost at an end but it will be December before we can even begin to sort out our close and shoes and put them away. At the moment the office where my computer is is full of clothes and shoes and so is the sunroom. The house feels very crowded indeed.


The two bedrooms upstairs are now completely decorated. We now need them to  be carpeted. The large bedroom where my knitting machines are will have shelving all the way around in order to accommodate all of my Doc Martens. The smaller bedroom will be my dressing room it will have inbuilt wardrobes and a chair and also a grab rail on the wall because John is not always here when I need to dress. 


I am now on to new drugs. This takes my daily intake to morphine, tramadol, gabapentin,paracetamol, rosuvastatin, amitriptyline, aspirin, baclofen,  Valium occasionally and to daily tablets which I cannot remember the name of one of which is to rid myself of excess water and the other is to control my bowel.  all in all about 42 pills a day.  The Valium is very occasional. It enables me to sit still long enough to watch a film as long as I get the dosage right. Too little and I am unable to keep still and too much sends me to sleep! However having said that the baclofen works really well with regard to my muscles and the spasms and so I have had no need to take Valium for quite some time and maybe I won’t have to again.


I am going to write a blog post which details all the symptoms as far as I can recall that my disease causes. The reason for doing this is because it has become very apparent to me recently that I am not really aware of what is normal and what is my disability because I have become so used to it. The reason this has become important is because my doctor for want of a better word is annoyed or disappointed that I am not telling her the whole truth. I have not explained that well my doctor is absolutely lovely. But even my John has noticed that I do not tell the truth when I am asked detailed questions about how my disease affects my daily life. It isn’t partly because of my training about  one must keep a stiff upper lip and not complain  and partly because I have got so used to the way my body is that I just do not see it as abnormal. I do not view myself as a disabled person and John says I am far more disabled then I think  I am. And for John to say something like that I know that he is speaking the truth


I was brought up not to complain. And certainly not to complain about the abuse. If I tried to I was abused even further or I was called a sissy who was making a fuss about nothing. This is why my disease went and diagnosed for so many years because I did not go to the doctor to complain about the things that my body was doing. At that time my body was doing things intermittently which did not help.


There are other symptoms of course which I have not spoken about because much to my surprise I realise that I am embarrassed by them. I really did not think I was that sort of person and am normally willing to talk about anything. However the problems I have with my bowel and my bladder I have been keeping to myself. Oh yes I have said that I have IBS and I make jokes about it.  What I do not say is that although normally I would get quite severe pain which would warn me that I need to go and go quickly there  are other times when I have  no warning whatsoever which inevitably leads to accidents. Apart from once or twice this has always been at home because when I go out especially to dog shows I take a lot of morphine and this ensures that I will not need to go. If I did I would have problems because I would need help to get dressed again.


Now as regards my bladder. The new drug baclofen has really helped in that regard that as a side-effect. It would seem that I had an irritable bladder as well and the baclofen has reduced the amount of times I need to go and when I do I do a lot instead of just small amounts very frequently. However the one thing it has not cured is my inability to know whether I have finished or not. So I need to change my underwear frequently during the day. For dog shows I wear a woman’s pad.


I am constantly falling over because my balance is terrible. I cannot walk in a straight line and I  Always veer to the left. I have done this for many years but now it is very much worse. I must fall by at least half a dozen times a day. When I say fall I do not mean that I fall enough to hit the ground. I do sometimes but most of the time I was somebody else manages to stop me from falling. In my own house it is very easy because there’s always something I can grab hold of. Outside it is not so easy. For some reason most of the time that I fall will be when I am standing still and I always fall backwards. It is this falling backwards that is a common symptom of my spinal  disease.


Then of course my speech is affected also. There are times when I can barely get my words out and other times I sound as if I’m drunk. My memory is absolutely appalling. I will lose in mid sentence what I am talking about and sometimes I can be listening to somebody talking to me and I become completely unaware of what they are saying it is as though my brain just switches off.


My hands will not write any more and I have many problems trying to do up buttons on shirts and trousers. My shoes already have theirs laces tied up and I do not undo them when I remove my shoes and I use a shoehorn to get my shoes back on. With my boots John ties them up for me.


Getting out of bed in the morning has become easier because of the electric bed. I pressed the button until my back is vertical  and I am then able to get my feet on the ground. If I still cannot stand I can press another button which will push my bottom-up until I am in a standing position. You can imagine what a nightmare it was to get out of bed before we had this bed. I used to have to roll out of bed until I fell onto the floor and then I would get up onto my knees and I would use the radiator and the bed to haul myself up. With John’s help I will remove my pyjamas and I will have a shower. Then we must sort out what I shall wear that day. I forgot to add that before I can even think of getting undressed I must take my drugs  and wait for them to take effect. It would usually be about 90 minutes between getting out of bed and getting out of the shower. I will then need to rest before I get dressed. All in all it takes about 2 1/2 hours before I am ready to go out and this is with John helping me.


Our toilet and bathroom are upstairs. There is no way that I can go upstairs every time I need to urinate. Fortunately there is a drain outside the front door, I mean the back door. 


 This article has been typed using a voice to type recognition software, DragonDictate for Mac, because without this I cannot type any more. oh, I can type but the amount of errors I make that makes it not worthwhile.


Fortunately for me I can drive and I drive very well. I do not lose concentration and because I have an automatic and a very comfortable and upright chair I find that driving is one of the most comfortable things that I can do. Having said that I still need to stop at intervals to get out of the car because my body seizes up from being in the one position for too long.


Part of the reason for the new hi-fi system, well in fact all of the reason, is because of my disability. All of my music is on my Mac and I can control that from my lap. No we did not have to buy high-end British handmade hi-fi equipment but it was John’s retirement present to us both as we both really appreciate good music.


 it is also more expensive for disabled people to live day to day lives. Now that the weather has become cooler the house has to be heated 24-hour was a day because cold is a real killer for me. And I do not exaggerate. Getting cold is not only painful but dangerous. I seem unable to regulate my own body temperature very well. Their heating in the house must be on 24-hour was a day. Although this year we are definitely feeling the benefits of the new insulation because we have so far only had to have the heating on in the house  for short periods.  the heating in the sunroom is of course on 24/7 because of the puppies.


I am unable to use knives and so therefore I’d buy my vegetables already prepared and ready to cook. I cannot lift a pot safely. Most of my food is microwaved. When John is here then my food choices are different because he is able to do what I am not


One of the things that I suppose annoys me is the comments people have made to me about showing my dogs. Well if you have read this far you will understand why I have to get up a full two hours before I can leave for a dog show and this is without having a shower. For me to do a dog show requires 120mg  of morphine.  400 mg of tramadol.  3 g  of paracetamol and 1600 g of gabapentin.  This is how I manage to do a dog show.  Drugs themselves are not enough. Grit and determination and stubbornness  and a strong desire to do what I want to do is what gets me through. You would not believe the agony  I am in after a dog so or even during a dog show. However, it is my choice to do this and I will continue to do this for as long as I am able.


There are some sick people at dog shows who have gone as far as to say that they believe that my condition is all an act so that the judges will feel sorry for me and that is why my dogs win! And there are other people who are just plain ignorant and it does not occur to them how difficult it is for me. No, the last thing I want is pity but it would be helpful if people understood that there is a limit to how fast I can move when in the ring and that it takes me longer to get my dog on the table. I do all of this with a smile on my face because I really do enjoy the dog shows and I am very proud of myself that I and doing them. I had no idea that I had the sort of gumption that I am most certainly have


The reason for this article is that recently I have felt that I have had to justify myself.  Not only that but for medical reasons I have had to give a lot of thought to the way my daily life is. As my darling John has pointed out I have become so used to my disabilities that I have become unaware of maps of what I do or don’t do and I no longer see what is normal and what is not. For instance it takes him about five minutes to get out of bed and get dressed if he is not showering. It takes me about 90. My doctor needs to know about every single symptom but I get because they are important because it shows the deterioration of my disease. Like for example when my neck fell forward so that my chin was touching my chest and I could not move it because of pain. Although this was very frightening it was not the permanent thing that I thought it would be. All that it required was the baclofen which keeps my muscles relaxed.


So there we have it. I am sure that I have still left things out but this is the best I can do for now. I will say to the survivors who are reading this this is just another example of how invasive into every single part of our lives the after-effects of the abuse is. I would have had treatment for my disease many years previous had I not felt that I was just making a fuss about nothing because that is what I was always taught. Even when I broke my foot I was told that I was making a lot of fuss about nothing and in fact my foot went untreated because of this I think it was something like 18 months before my foot was put in plaster to straighten out the bone and the way it had healed or something like that I was very young and I cannot really remember the details I only remember that I was constantly told that might complaining about my foot hurting was just me being a sissy. So you see we do need to speak up.

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2 Comments »

  1. Colin, I think you need to include the dietary limitations as well as they may be in part due to the medications or in part from the way this disease is treating you.

    Comment by GailR — November 1, 2012 @ 5:09 pm

  2. Thank you, Gail. I knew i’d leave something out! Fancy leaving the diet though as that is a large part of the hassle!

    Comment by knitmanyarn — November 1, 2012 @ 5:40 pm


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