I ate more last night than I would usually eat in three days and it’s not finished, I seem to have almost as much still sitting in the fridge to be consumed today. I suppose we all have eyes bigger than our stomachs but no matter how much I enjoyed my dinner there is one thing I know without a doubt, I couldn’t eat like that more than once a month and even then I would probably only have about half. I don’t know what it is about eating, but I just don’t have the a great interest in it, something I never suffered from in the past, I was like everyone else was happy to eat whatever was there to eat, I always had what most would call a proper meal once day, even when I was alone I still made the effort to cook, because I loved doing it and eating it. Last night I ordered a 10-inch pizza, some onion rings and mozzarella sticks, and some Indian desserts that although the perfect heart attack in every mouthful, I just adore as a total treat, odd for someone who on the whole doesn’t like or eat sweet things. In the past I would have eaten every scrap without even a second thought, I managed just about half and I was so full, I just couldn’t go to bed until it settled even though I was already past my normal bed time.
I suppose our relationship with food is one that most of us never really look at unless you or someone close to you has a real problem with it. I was a well-overfed child, like most of my generation our parents had lived through the years of rationing and they wanted us to have as much to eat as we wanted, as they were never going to let us know what hunger was. The problem with that desire was it meant we all had far too much! Cooked breakfasts or cereal and toast, three-course school lunch, two courses at dinner time, followed by as much bread and jam we could want and of course the cakes if that wasn’t enough there were sandwiches and biscuits before we went to bed. Not too surprisingly I was a tubby child, not fat by any means, accept when I was a toddler, as I was also like every child of my generation, I never really sat still. I was always outdoors as long as it was no further away than the far side of the park opposite the house, well out of sight, but always running, cycling climbing and active. The downfall hit me when I was in my first job, just sitting there, no running, no sport, no activity faster than walking. My weight fluxed right through until I was pregnant with Jeffrey when I reached 18 stone, mostly down to baby and fluid, as within 6 weeks I weighed just 12 stone 7 lbs, but I had been scared by what happened to my body and I took my food under control, it meant that I first had to learn to calorie count and once my weight was down, to spend the rest of my life keeping a silent estimated tally, plus taking emergency action should I gain even a couple of pounds, but I never has a problem again until my MS turned progressive.
Finding yourself unable to eat is actually the last thing I would have expected from MS, I had no idea that I could ever be unable to swallow until the day it happened, nor did I think that just a few years later that when the stress of life was ripping me apart that my body would simply stop processing and dealing with food, so much so I spent 3 years with a Gastric nasal tube, luckily something that fixed itself when I became housebound. My weight slowly began to rise as I was more and more able to eat, but I have never to this day been able to eat great quantities without paying for it, just as I did last night and I this morning. I don’t know what the reason is or where even the logic lies, but my body physically has a problem with me trying to eat like everyone does. I have even had to move my main meal to lunchtime as then at least it has settled by the time I head off for my main sleep at night. Food making you feel ill and causes me more pain that I just don’t need, it isn’t right, but it is one thing that you learn to live with and how to manage it. Picking and grazing works best, it might take me over an hour to eat my cheese and oatcakes but at least I enjoy them. Yesterday was a special day and we all do all the wrong things on special days, even though Adam gave me an out, he even offered to forego his birthday treat, but I wanted to do the wrong thing and I did.
8 or 9 years on from the point I started to have eating issues, well you would think that I would now be able to say here is the answer, I can’t. MS has a bad habit of tweaking what it does to you just when you think you have it in hand. No I no longer have a tube stuck down my nose, and food doesn’t get stuck in my throat daily, but I have no great desire to eat these days and no matter how little it is, it still just turns into extra weight. Once you have spent several years not being able to eat, you actually get used to it, but it makes the weight thing even more annoying as I still eat less now than I ever did. What my MS will do next is anyone’s guess, but somehow I think it is reasonable to say that I will never be able to eat normally, it is just one more problem my health has caused and one more you just have to live with.
Please read my blog from 2 years ago today – 25/04/12 – The bogeyed monster
I can identify with you on the food thing, though maybe not as severe as you find it. It bothers me that I’ve been having much more issues in last 2-3 years with swallowing food, digesting it and now find many things I loved, like potato products, lay very heavy on me as |I have my meal in the evening. John, though doesn’t have my issues is finding it hard to cope with meals as he’s a big man and always eaten large amounts and his body in size and managing it has always coped. But he’s coming up to 56 and doesn’t exercise as much as he used to, mostly sue to worsening of his constant, ongoing depression and not wanting to be out and among people. If we go out together anywhere, which has mostly been sporadic as we live very separate lives, for along time it has had to be early mornings if possible, or at a “quite time”,so less people around. He admits this is very difficult in very over crowded, cramped country!If it’s more special occasion like a birthday and having a meal, try to go at lunch time rather than evenings!!
Back on my food thing, someone has mentioned to me that though my Doctor has seemed nice and ok, easy to talk to (only been with him just under 2 years) they think it’s odd that he isn’t taking my worsening symptoms seriously enough and hasn’t referred me back to a Rheumatologist. I get the feeling that everything is put down to my Fibro, Arthritis or that I’m “anxious” or “low mood” as that and “chronic fatigue” has been what he’s been putting on my sick notes for last few months. I have wondered why he’s used those terms particularly for those certs, unless it’s because he thinks that’s what DWP will understand?
Anyway, my appointment with him on Tuesday went very wrong, he got really agitated at what I asked of him, I didn’t know what to do so came away, very upset clutching all my paperwork. I don’t know how much you know about benefits, being On ESA, ATOS Work Capability Assessment etc., but I got an appointment just before Easter to attend an Assessment in Ipswich, miles from Norwich on May 7th. I was in a panic as I know (have been protesting about them & too obsessed with it all!)they are to trip you up, no matter what you’ve filled in on the huge, hideous form, what your medical records/people say. I was advised to request a home visit but my Doctor had to fax them that request so I had phoned them before I went to see him. Well, that was what got him agitated, he said it wasn’t up to him to decide my fitness for work(despite signing me off work/looking for work/on JSA)it was between me and ATOS, he thought I should be seen in Norwich, then said he knew they were causing much stress&anxiety to me and other patients. He agreed I had got worse, health wise since last September, when I had the saga of the Jobcentre/Work Programme/Temporary job that lasted 6 weeks. He then mumbled that I would just have to sort it out with them and appeal if necessary, but as a group online who have been helping me with this said, “your doctor is meant to help you so you don’t have to get turned down/appeal”
I tried to show him other paperwork I had, to show what ATOS etc., were really like but he was adamant and really hostile about it all, though he didn’t raise his voice or anything. He has signed me off for another 6 weeks but it leaves me in yet another difficult situation, don’t want hassle of changing doctor?
I have now phoned ATOS again and told them I can’t get a home visit, will struggle to get to Ipswich and they said they’ll postpone the 7th May appointment, review things (whatever that means) and get back to me.
So I am trying to re-group, not get permanently angry like I have been about it all and I’ve been reading too much on twitter and Facebook about so many awful & negative things, my reason being that I need to keep informed about it all!!!!!
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As I have written several times I haven’t gone through any of these experiences, in fact I have found the total opposite but that may be because I have never thought myself as ill as the doctor keep telling me I am. They wanted me to stop working for about 6 years before I did, and even when I was forced out by redundancy. I still fought to not be written off and I lost, they decided to sign me off forever, well 2 years and then another 2 years, that seems to be how it works, but I have never actually seen anyone or even spoken to them and only recently accepted no one will employ me due to my being housebound. Even now if I was offered a job, I would give it my best shot, although I do severely doubt I would be able to manage it and I would warn the company of the problems I have and how they would effect them and my work.
I guess all these things are about the individual, their health and how they feel about it themselves, I do feel sorry for you and of course hope that you will get the result you are hoping for.
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