Four days ago I gave myself a shack and set about once more trying to do all the things I am meant to for my health, including once more bladder training. I have lost count of the amount of times I have done this and yes I keep up with it for a few days and somehow it all just slips back to normal. I decided because I knew that I was carrying a large amount of fluid that I would take my Frusemide every day for a few days, just to help shift it, I haven’t actually stood on the scales but I swear I must have lost a stone in weight, I can feel the difference, not just in my pyjamas and dressing gowns, but in every step I take, I am totally aware of how different my legs feel and even my stomach, silly I know but that is what is happening. There isn’t any point in me standing on the scales as I haven’t stood on them now for over a month, but I find I never do when I feel gross and believe me I have been feeling gross. I couldn’t understand how I was putting on weight, weight control once you can’t really move about is almost impossible, all you can do is vary what you eat and I really don’t eat enough to cut any more out.
As I have said before I am a faddy eater and my diet hasn’t changed for several months now, but briefly for those who don’t remember this is what I eat daily. I have porridge for breakfast, no sugar just salt and made purely from water and oats, but I do put one serving of cream over it, I do mean one serving, a carton has 20 and I always get 19 or 20 out of it. For lunch I have about an 1 1/2 oz of different cheeses, sliced so thin you can see through it, that way there is enough to cover all 6 of the Oatcakes I have and to add their unique flavours, but no butter or margarine, I have two more Oatcakes with nothing on them in the evening and that is it. I know that I can write off cutting anything out of my diet as I am already way below the calories for a single day that I would have had when I was active.
The real problem is a lack of exercise and no matter how clever you are, there is nothing you can do about it. I used to try, just doing really simple things like when I was lying in bed I would lift a leg of the bed and try and hold it there for as long as possible, which isn’t long. I quite simply don’t have the muscle strength to do any of the things that I would have laughed at if suggested a few years ago, I used to lie on the floor with both feet held just 3 inches off the floor for up to 3 or 4 minutes before my stomach muscles were screaming so loudly I couldn’t take it any longer. Years ago exercise wasn’t only important to me, I used to spend a couple of hours every day working on my muscle tone all over my body. I stopped exercising when I stopped DJing, I simply didn’t have the time and yes I saw my muscles change dramatically but nothing like they have in the last few years of being housebound. I had like everyone else seen the effect of a sedentary life on others, but I never thought that my body could land up looking that bad, compared to those I saw walking around town years ago, I do even less. My entire exercise each day is simply wobbling and waddling my way around the flat a very few times a day. Even when I add up all the small jaunts, I doubt if I manage to travel even 100 yards in any one day, sedentary is still active in my book.
Male or female we all have a self-image and we all never expect to find ourselves living in our worst case scenario of a body. There is a condition called body dysmorphia, were a person sees themselves in a mirror either a thousand times fatter than they are or even thinner, what they see is their worst case scenario even when they are in fact the total opposite. I have seen several documentaries about the subject, I kind of feel as though I am living their nightmares, don’t get me wrong I have the greatest sympathy for those who have the condition, but I have gone from my ideal size, shape and image, that is still in my head, but when I accidentally see myself in the mirror, I see myself truly living inside what I can only say is my living nightmare too.
People often think that the worst parts of living with a condition like mine is the obvious things, the pain, the fatigue or any of the other symptoms, no matter how bad they are, there are many other things that get ignored by everyone, often including the medical profession. Frequently I have gained the impression that they avoid talking about it, simply because they don’t know how to tackle it, I have asked many times if there was anything, anything at all I could do about my weight and somehow they have just changed the subject, or brushed past it with a simple, “well it happens when you can’t move around”. I don’t know what I expect them to do for me, but I wish they would and could do something. I am fed up having to hide myself, not just from those around me but also from myself, I try to never look at myself, I get undressed and dressed in the dark and once in bed, well I try to keep my hands away from the sides of my body, that way I am not so aware of the size I am and the space I now take up on the mattress. I never look in the mirror unless by accident and even when showering I still try to ignore my body, something not that easy to do when you’re washing it. Weight isn’t just a physical issue, it’s a psychological one too, and if anything was going to pull me down eventually, this I believe could be it.
I don’t know what the answer is, or even if there is one, but directly it has nothing to do with any of the conditions that I have, but just like several other things, it could be the death of me. Obesity kills that is a fact and like so many other things for most people it is in our own control, I have none, but that fact doesn’t make any of it any easier.
Please read my blog from 2 years ago today – 20/04/12 – MS Research gone wrong
I filled in a form yesterday for a research project on MS and by the time I got to the end I had to send them an email explaining several points. It had been set up as part of a 20-year project to monitor sufferers and how their needs are being met, plus how the condition changes over that length of time. Great you would think, but all it did was compound my opinion that not even the so-called professionals actually know about or understand MS.
At first glance, I saw check boxes and scroll selection option, great little typing, a good start. Name, address, age all as expected. The first real question rang small alarm bells. The year and months…..