Weight and M.E

Hi,

This is an issue that has bugged me for years - how do people with M.E lose weight? Now I'm not talking about people with severe M.E who are often drastically under-weight because of the condition. This blog relates more to mild/moderate sufferers.

I went to an M.E conference a few years ago and heard an M.E charity dietician say that the illness itself does not cause weight gain. What causes the weight gain is lack of activity (not really a surprise) and comfort eating. Both of which apply to me.

When I used to work full time whilst having M.E, the activity involved with being on my feet all day kept my weight down at a fairly reasonable level and luckily I was also going through periods of 'remission' and could walk miles, go to the gym or go swimming whilst my symptoms were allowing it.

However, I haven't had one of those periods of remission for a few years now, and since becoming self-employed I find that some days I do very little activity. My world revolves around one desk and one desk chair in my living room. I'm finding that when I do venture out for a walk I get breathless quickly. Yes, that could be the M.E itself but personally, I do think there could also be a little bit of deconditioning going on. Simply because my lifestyle has changed so much over the past 2 years. So, when I feel able to, when my symptoms allow it, I am

getting back into the habit of leaving the house for a 20-minute walk. I just think, if Patch was still around I would still be taking him out every day so I want to try to get back to that level of activity. If my symptoms allow it. Have no fear - if the exercise makes my symptoms worse, I will stop. I am absolutely, in no way whatsoever, encouraging M.E sufferers to exercise. GET/PACE proved that exercise exacerbates our symptoms, which is why so many of us avoid it in the first place. However, I am going to see how much activity I can do without repercussion and only on days when my symptoms allow it.

I have said for many years that my bum is the size of Alaska. Unfortunately, now the years and weight have piled on, it is now the size of a small continent. I feel flabby, my clothes feel tight and I have lost all muscle tone that I ever managed to achieve (hint: not a lot!). I am hoping a bit of gentle walking will help get back to Alaskan-size proportions over time! Unfortunately for me, my weight gain is there for all to see on my YouTube videos. I think I must have put on a dress size since Foggy started back in 2014. I'm aiming to get back to the same as I was when Foggy started. I don't do scales, I simply go by how my clothes fit. Only yesterday, one of my close friends said that dieting is easy. Simply burn off more calories than you eat. Sounds simple enough but what if you can't do exercise? What about when you can't 'burn off' many calories? Should we exist off a 500 calorie diet?!

As for comfort eating, I think only sufferers with wills of iron can hand-on-heart say they don't eat when going through 'payback' and it feels like you are alone with this dreadful illness. I admit I am a comfort eater. I am really good at eating 3 healthy meals every day. I can't eat processed rubbish because more often than not it has gluten or dairy in it, both of which I am intolerant to. I eat from a small dinner plate (has anyone actually shopped around for small dinner plates recently? I have! It took weeks to find one that was 1970's portion size!! Plates are huge now...adding to the obesity epidemic?? I think so!). I think I am putting on weight for 2 food reasons:

1. I snack. Or at least I used to until a month ago. I am now snacking around 10% of what I used to, hopefully that will make a difference.
2. Gluten-free food is full of sugar and other rubbish to make up for the lack of gluten. So when I have gone to a business event, day out, or trip to the hospital, the only food available is full of sugar and calories. Anyone else had the predicament of being on a diet but the only gluten-free option on an extensive menu is a bowl of chips? (Even then some chips have a coating on them).

Yes, research has shown that M.E bodies don't create/use energy in the same way that 'normal' bodies do. Perhaps that is linked in some way to why it is so hard to lose weight. However, I am going to do as much as I can do to turn the tide. I don't do extreme diets, I like to keep things simple as there is a higher chance of sticking to it! I am also trying to be as sugar-free as possible - wish me luck with that! Some of Foggy's Followers call me Wonder Woman...I think I'm going to have to borrow Superman's willpower of steel!

Love Sally
and Foggy (OBVIOUSLY)
xxx