Body mass changes.

My right leg for a change is the one requesting amputation but as they say a change is as good as a rest, well they are wrong, I would rather have the rest. lol. There are times that I am sure that all of us who live in the Chronic brackets just wish that we could flip a switch and turn off the whole thing, just bring a time of total peace so we can recharge and start again. It is wrong to think that sleeping brings refreshment, think back to when you have had any illness, you wake in the morning feeling just what you did the day before, those hours of sleep are nothing more than an interlude, a switch off and back on again, but unlike rebooting a PC the fault doesn’t right itself. There is though still a joy in sleeping, it’s hard to explain but when I go to bed so tired that I know that my head will touch that pillow and sleep will take me away, that it is a joy as it is a short interlude that I am by that point longing for. I have done it for years but at times I am tempted to switch of the alarm clock and just see how long I will actually sleep for, before my body brings me round, I have a feeling that it would be a case of when the meds ran out, rather than the need for sleep runs out.

I took a long shower this morning, something I haven’t done for a while as I was getting worried by weight increases than for any other. Over the years of being immobile I have slowly risen form 9st 10lbs to just under 15stone, no matter what I have done I just couldn’t loose any and being so close to what I knew was the weight limit of the fold down stool I have been having short showers, limiting the danger by limiting the time. When I went for my first visit to the hospital their scales match almost the same as mine, so I knew that it was me and not my scales. On each visit to see the specialist they have weighed me and each visit my weight has gone down. My last visit a couple of weeks ago put me at just over 14 stone, I weighed myself today and I was 13st 11lbs, clearly a long way off the seat limit and the red flag to me to be able to sit and enjoy the water. I have no idea how or why I am loosing weight and for now I really don’t care, the fact it is going and that’s all that matters, and the hospital don’t seem to be worried either. Who knows I might actually get down enough for some of the clothes filling my wardrobe on me rather than hangers.

That has been one of the mad and expensive things about being ill, my weight has been all over the place and believe me it is expensive having to by clothes over and over again. When I was on the gastric tube my dress size dropped to a UK size 6 I weighed just 7st 2lbs and once on the tube it rose quickly and I was happy to settle at a size 10, through out that 3 year period I found my answer in jumper dresses, the are ribbed and look too small to put on but stretch well, and suede pirate boots covered the matchstick legs. It is often the simple things that make life bearable and finding ways round you mad body looking madder than it feels, for a woman is a big thing. Since I stopped going out I have warn a range of nightdresses, pajamas and housecoats, all loose and all easy to get on and off. None of the clothes I had were of any use, not one would stretch that much, so going to the hospital was difficult but I discovered that my pajamas with an over shirt and coat looked like a trouser suit, and no one asked why I was still in my pajamas, so I guess I got away with it. No magic wands but with a little thought, there are ways that you can give a close to normal appearance with a little thought. one thing is to never throw away, that was my mistake, all my larger clothes went in the bin, I didn’t allow for the weight ever going on again as it has. Who knows if the weight keeps falling I may well actually be able to get dressed for a future appointment.

Disabled Different?

John went back to the US last night, I think it was a very long day for all of us as we all felt helpless. Teressa is devastated, something that is clear by her pleas to her friends across the world on Facebook. Due to her traveling life she has gained a strength and ability to cope, with long distance friendships which right now I am glad off. I normally just read her Facebook as I see it as a link but one that in normal times she doesn’t need her mother getting involved in, but I felt a need to add to it for the first time yesterday and did and again this morning. Some of you will have noted the unusual spelling of her first name, not the spelling that I gave her but one that appeared in her late teens and has remained and I respected as it is her choice. Today she appealed to her friends as she has already had problems with the difference between her official documents and some bills and letters, I couldn’t resist…. ‘As the person who gave you the name I think you should go back to the original not Teressa, but “TERESA_JANE”!’ I know she doesn’t like the double barrel first name so I couldn’t resist it, knowing it would make her blush with everyone else now knowing, I did go on to give advice and add that it could have been worse I could have told the world her middle names as well. She knows my sense of humor well and I just wanted to lighten her mood for a minute. It will now be months until the two of them can be together and my heart goes out to John as in someways he is in the worse position, no job, no home and no Teressa, she at lease has the other two already and starts work on Monday so it will help to keep her busy.

On my other blog today I posted a very short piece simply called ‘Different?’, it is part of my ‘Dazzle’ posts but as I was writing my brain was running thorough instances in my life were my own experience and feelings linked, unfortunately there are too many for my to put into any single post but two made me want to add them in here as they may well have meaning to you. I have always in my teenage years and since I left my first husband preferred a more dramatic and individual style, in the late 80’s I started having tattoos done,this was long before the ‘Beckham era’ so not done, especially by women. All my tattoos to this day are easy to hide should I wish to but they are extensive, both arms from the elbow up, my full back, shoulders and two panels at the front and a few on my legs, I hadn’t actually completed them when my MS stepped in and change the nerve sensations increasing hugely the pain, I couldn’t predict if I would manage to have 2hrs or just 2mins of work done. I was and ma proud of them and went out most of the time with them on display, my hair has varied in length and style but again dramatic in all my choices, of colour and accessories, all combined by strong dramatic make-up, 53 earrings in one ear and a nose piercing. Being tall for a Scot at 5ft 9ins and dressed in black in clothes I never saw anyone else wear I was, when I walked down the street I was to say the least obvious, and the reactions varied wildly.

What got to me slightly was the change I saw in the winter when I went out covered-up to the summer. Winter yes there were reactions some stared a bit, others smiled, but in the Summer it was nuts. If all my tats as far as possible were on show and I added high heels people got out of my way, the path in front of me widened, as they physically moved as far away as the pavement would allow, many looking at me with a touch of fear. I never asked what was wrong with them and it is only my guess but I felt as though they thought that any second I might draw a knife and attack them. Why? I can only think of the way the media portrayed anyone with tattoos as a monster, who would kill you as soon as look at you. I can also still remember the change in people when I spoke and they discover that I have what most call and educated Scot accent, I went to private school and had elocution lessons so I sound a bit posh if you like to call it that.

By the time my illness took over and change my physical movement I was aware again a of a change, at first the assumption I was drunk and the disgusted looks I received. When I gave in to the walking stick I was treated probably in the most normal way regardless of my other appearance that I have ever had, but then came the wheelchair and with it pity, at that point I was working in an office so Monday to Friday pity followed me around, at the weekend I dressed as me and suddenly I got respect, genuine help and assistance and for once as a human being.

I have put a lot of thought into why? What causes all those reactions to just one person and all I can come up with is social acceptance of difference. I am the same person but I have a much wider view of what the world sees and how they react. Being disabled and sat in a wheelchair in a normal long black coat is an accepted look but the chair made me into a person who received pity and I hated. Anyone out there that uses a chair will have seen it and it hurts, you are a person who is sat down, a person with the same feelings and abilities as anyone else, just not able to walk. Put me in the same chair with outrageous clothes and tattoos showing to the world and I am courageous, strong and to be admired and helped with a smile. Believe me you don’t have to hear the words from your helper the whole of their feeling show on their face.

I have taken for most of my adult life the looks, the perceptions, the feelings that fall on me and passed all of them off with my head held high, but it doesn’t mean that inside there isn’t pain, there isn’t hurt and there isn’t disbelief that simply your appearance is enough for the world to judge. I am not going to change the world and neither are you but if you are reading this and you too have an illness that makes you different, well my advice is if you have ever had a hankering to wear thigh boots, mini skirt and mad make-up, do it now, it works, it works to your advantage when you least want pity and false help.