With a weekend slept away and as seems to be the norm these days, not quite making it ever to the alarm clock, thanks to my bladder demanding attention. Clearly that is the factor that would stop me from ever sleeping 24 hours right round, it wouldn’t be a demand for food that is for sure, I just don’t seem to really have an appetite these days. Through out my life of illness I think food has always been the thing that has struck me as well beyond strange. From adulthood and freedom from my mothers kitchen where it was shovelled down your throat at speed, like it or not and believe me not was usually the winner of that choice, I discovered that food was something to be enjoyed. I managed to loose what my mother insisted was puppy fat and I know was from food swimming in fat, I managed to control my weight through out life, with the one exception of my first full term pregnancy. Size 10 – 12 was size normal until my MS turned progressive and then suddenly things went mad. Much of it can be tracked to my mobility as as I slowly slowed down and walked as little as I could and then with the aid of a stick, my weight went up and I felt trapped with no way out of ballooning. To my joy the addition of wheels actually brought my weight down dramatically, I didn’t realise that zipping around in my wheelchair used up so many calories, a bonus to anyone now fighting the very idea of giving into those wheels.
I never expected that I would actually ever have problems eating enough to maintain a minimum weight but that was exactly what happened to my a few years ago, to be honest I can’t be exact about it but I think it was around 7 years ago that I was having for the second time in my MS trials in actually swallowing food. The first found me straight into hospital as I couldn’t breath either, somewhat more important than the food and a flare that many thought I wouldn’t come back from as on top of that I couldn’t talk either, co-ordination had gone. Intravenous steroids and test of all sorts found me off work for a month and eventually back almost where I started but having to be careful how I ate and drank from then on as chocking had become a feature of my life. I hadn’t really understood just how difficult MS could make the simple things and my first taste of not being able to eat, did actually shock me, I hadn’t expected that the simple act of coordinating breathing, talking and eating could be. Believe me when you loose it, it is scary and to today it still happens in short spells, for no reason I will suddenly be sat here doing everything I can to work all my throat muscles just to swallow saliva and to take a much needed breath. In the last few weeks it seems to be happening more often again and not just because I can’t swallow saliva, at times I just can’t swallow food either. It is one of those things that you forget about until it happens again and once again you panic for just a seconds, before managing to regain total control, but it lurks there waiting to catch you out at any moment.
So far the worst eating problem I have had landed me up living for 3 years with a gastric nasal tube, 3 years of never tasting real food or even being able to enjoy those things I loved best. It is actually the only time in my life where I bought food with the intention of throwing it out. I know that sounds mad but I so missed the flavours of the foods I loved the best, that I bought it, chewed it to release every flavour I could, just to spit it out and through it away, as I just couldn’t swallow it at all. When my weight fell to danger level they had to fit me with a tube, something I learned to change myself and to deal with every part of life with a two litre bag and a whirring pump constantly with me, adding tiny amount to my stomach every few minutes. MS had turned something that was a joy into an issue to be dealt with, one that has still taken the final laugh as now I eat mainly without huge issues. I got rid of the tube by removing the stress of working life, being housebound, not getting dressed, hassled by taxi’s the pressure of the office and so on, slowly allowed me to eat. The last laugh, well no exercise and good food back on the menu, up goes the weight again. I suppose it is no surprise that every time I loose my appetite or I just feel like I am full to soon, that I start to worry quietly. Finding myself not hungry bring up the horror of living with a tube, even if I haven’t wanted food for a couple of days, I now worry. When the doctor got thing wrong last year and thought that my diaphragm pain was from my stomach, not my lungs and they once again were running tests and poking at me, I spent nearly the whole year waiting for the words, we need to put a tube in. I am a million miles from needing any help of any kind but I still worry when food is just something I am not that interested in and can’t really manage to eat.
These days you can’t even watch TV without being told all the time that we need to have a good diet and we have to control our weight, but I just wish one of them would explain how do you do any of that when your life is out with your control. It doesn’t matter what you chronic condition is, if you are unable to exercise in any way, you are going to gain weight, it’s a fact. I am open and totally out with my control to the fact that any minute I may well be told that I have Diabetes, or Heart Disease, I can’t even exercise enough to keep myself free from the the possibility of Deep Vein Thrombosis. I am sure that there are also a thousand other conditions that Doctors have hidden waiting to drop on us. It is only recently since I was told about my COPD, that I began to stop feeling guilty about all the things going wrong with me, as not one of them is actually within my control. As the doctor said then, I have been dealt “a shitty hand in life”, no matter what is wrong with me my MS is always there, always making everything worse. I am as likely to die from emphysema, as I am from my MS closing my lung down, I just can’t win, regardless what I actually do.
Right now they are advertising on TV, telling us constantly that we have to do this or we have to do that, otherwise you will die from x or y, but if the conditions you have already mean you can’t, you can’t and I won’t be made to feel guilty or that it is my fault in any way, any longer, I just wish they would for once let me have a day without telling me it is.