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.

To far alone

Yesterday ran a way with me and I found myself with tears in my eyes frequently. It started to go wrong when I actually managed to first remember to make a phone call and second when they actually answered my call. I received an appointment to go for Breast Screening, I knew where the unit was and strangely it is right in the middle of Glasgow just a short distance from Central Station. I decided to ask a few questions about getting there and what would happen when I got there because of my needing help. Just as going to the hospital I was going to have to arrange an ambulance and the stair climber but when I asked about what the would happen on arrival, I felt myself going in to a sort of panic. The clinic is in a very public area and there a about 8 steps from the road to the doors which of course would mean a slow climb in the public eye just to get in there. Now that may sound like nothing to you but lets step through what this day would really mean to me.

First as always would be the getting ready and the stress that alone seems to cause along with the added fatigue. Next getting out of the house and into the ambulance, not a nice trip down the stairs but neither is what I spotted on the last trip out, that people in the blocks near ours, leaning out trying to see who and why the ambulance is sat in their street. I can only imagine how much that would happen at the other end. This building is not a hospital and it is on a very public road where hundreds of people go by and like it or not that will mean loads of them starring, to get up those steps would take a couple of minutes and of course I haven’t added in yet that Adam couldn’t be with me, as they won’t let him come with me in the ambulance. After climbing those stairs in full view of all those on their lunch break, and once actually in there well the person had to think about this bit but said eventually that she thought there was a wheelchair. Next would be the lift and then waiting for the scan where, she said it would take a few minutes but getting the scan done, she thought was possible from the wheelchair, it just meant adjusting the machine. Then all the problems with getting clothes off and on before having to go through everything in revers eventually getting home. Just sat here on the phone discussing it I was getting into a panic about it all, my head was spinning about how I could and would manage it and I was terrified, I couldn’t do all that by myself, there are just too many possibilities of things going wrong. It was completely stressing me out and I got into such a spin that I was a stuttering word less mess, but I managed to cancel the appointment. There is just no way I would be able to manage all of that, even now when calm I know I can’t manage it, it is just too much.

I have gone form the wildly nutty over confident person to one who can’t even think about a simple journey. If I was going to an actual hospital I would be fine, I have done this three times in the past few months it is where this place is and the fact I can’t have Adam with me to take over when I got lost. 5 mins on the phone and I was a wreck, tears and shaking and fear.

The evening found me back in tears and this time well it was understandable, I was watching children in need. Seeing those families and what kid have to go through, well you would have to be very hard person in deed to not have a lump in your throat and tears in your eyes. Having lost a child my heart went out to those parent who had lost theirs and the tears where all over the place, understandably.