I am guessing that it is really cold out there today as for the second morning in a row, there is a chill on the house and once again I am finding myself trying to work out if it is cold enough for me to take on the trial of lighting the fire. On the good side, today is the first time in over a week that I have actually wanted to have my breakfast. It’s been days since I felt hungry, but now after 7 visits to the bathroom, I at last feel as though I have somewhere to actually put my food. It really is amazing how something so simple, can actually make to how you feel, I was keen when I went into the kitchen as I knew that Adam had been working on opening some little pots of marmalade that I had found impossible to shift the lids from. It wasn’t just me being frail, Adam had to take several attempts on the one I wanted the most, the one with Ginger in it, before he finally managed to shift it. After taking my meds, my usual large cocktail supplemented by the horrid new liquids, I prepared myself two oatcakes covered in marmalade and a pot of yogurt, all eaten with gusto, then 10 minutes later, I started to feel sick again, just as I was all last week every time I ate. I guess that it is all part of what has happened to my insides as not only does food make me feel nauseous, but I also seem to have a lot of wind, nothing goes in through my mouth without my burping in the next 20 minutes or so, but this morning, it feels worth it.
I always thought before I knew what the path of my health held for me, that when I became housebound that one of the things I would be able to do what to spend my time cooking good meals and really enjoying the foods that I love. I suppose simply because I never read anything on the sites that specialize on MS, that you could develop so many problems around the simple process of eating. Yes I knew that swallowing could be an issue, but I never once expected to find myself living through a gastric nasal tube, or to have such problems that my entire gastric system. I had this odd vision of having both memory and mobility issues, but still being able to cook, why I thought that poor dexterity, eyesight and a sieve for a brain could cope with such a complex thing as cooking fine food, I don’t know. But there I was in my head, crippled in many ways, but once again spending my life being a good housewife. These days I can barely manage to beat enough cream to make a dipping sauce, so how I thought I was going to be making souffles and bake bread as I did years ago, I don’t understand now, but somehow housebound and housewife were interchangeable in my mind. As time went on I knew that vision was totally wrong and not my future at all, but I hung on for a long time the idea of at least simple cooking and eating. Even when I started to choke on food, I still held on to what I suppose is one of the most nurturing image there is, the preparation and sharing of food. Regardless what phase of my life you choose to look at, the one thing that has been constant throughout is the essence of me, the nest builder, the carer and the person who tries to look after everyone around me and of course myself. My PRMS destroyed my ability to just enjoy eating a long time ago and at first I still tried to cook for Adam, but he stopped me, he didn’t feel right about me preparing food for him that I couldn’t eat. Now I see he was right, but at first it hurt, it was as though he was taking away one of the few things I could do for him, but like everything else I adjusted to it. Now it feels so stupid, but despite the pain that I was living with, the greatest pain came from not being able to keep our nest perfectly or to show my love by caring for him, I eventually even had to hand over the work of doing our laundry. Housewife and housebound are so far apart, to be honest, the only thing they have in common is the word house.
To stay alive we have to eat and that food we eat, has to be digested and to pass through us, leaving through our bowels and bladder. PRMS has taken everything, even the parts we don’t normally talk or even think about away from me. I put food in my mouth, waiting to see if it will make its way to my stomach or choose for some odd reason try to visit my lungs instead, if it makes it past that first obstacle, well it then my body takes over, just because it has made it past the first obstacle, doesn’t mean it is gone, no it can then get stuck. This one happens the most, I chew my food and swallow, but whilst still in my neck, it stops there, it won’t go down and all I can do is force it back up into my mouth and try again and again and again. I know this sounds back to front, but I was taught it by the physios, don’t hold your chin up in the air to stretch your neck, instead tuck your chin in towards your chest, it forces the throat to open and stretches your esophagus allowing some food to pass. Like most things it is hit and miss, but it does work better than most things, the worst one you can do is to take a drink, with things stuck in your throat the liquid can’t get past either and then you can’t breath, guess where the liquid will then try to go.
I accepted with ease the issues I had with my bladder, well I had had them for years before my diagnosis, getting worse over the first few years of the change from RRMS to PRMS, well to be honest I didn’t really notice either until it suddenly went mad and self catharting entered my life. Over the last three years the demise of my guts has been documented from the very start as this is totally something that appeared in the last three years. To find that I am now the owner of a totally useless intestine, well it honestly doesn’t surprise me in any way, we may have achieved movement in the last few days and yes I am on the way to clearing the backlog, but here I am now once again imagining what my future holds. Over the next few weeks, I know that it is going to be a case of working out what medication it will take to keep things moving at an acceptable and safe pace, but I do fear that my future is actually going to eventually require surgery. Everything to do with food has changed from the one thing I saw as a homely enjoyable part of life and has turned into probably the second most scary thing my PRMS has managed to change for me. It is clear that my body is bit by bit closing down and now having the time to think about it, other than how to shift the unwanted, leaves me feeling a little numb, my body is slowly becoming my worst enemy and there is nothing either the doctors or I can do about it.
Please read my blog from 2 years ago today – 22/02/13 – Hospital recall
I forgot to say yesterday that I was at the hospital this morning, so everything is out of sink with my normal routine. I had to go back and see the Gastro brigade, as I already knew they are saying it is all down to my MS, but they now want to do further tests. I have to have another endoscopy this time from my mouth down, when I had the last one I said to Adam that it seemed strange that………..