The question posed in the title can go one of two ways; either you'll now be thinking about all your favourite foods & deciding which you to enjoy at your meal, or you'll be feeling sick to your stomach!
I, no doubt like many ME/CFS suffers, have the latter response! This question daily haunts me as since around the end of November, my appetite decided to go South for the winter & it doesn't seem to be wanting to make an appearance anytime soon.
I first experienced this wonderful symptom of ME/CFS (holds up sarcasm sign) around the time I was diagnosed back in August 2013. I noticed that I would feel hungry but have no clue what I wanted to eat, I didn't fancy anything & then I'd finally think of something, make it & then feel sick at the sight of the food in front of me! This resulted in many half eaten dinners. However, I only seemed to experience this for a couple of weeks & then it seemed to go. So although I maybe lost a pound or two during those couple weeks, I didn't think anything of it because I was back eating pretty normally & soon put them back on, along with a couple extra!
So when, I found I was loosing my appetite again in November, I didn't think anything of it at first because it only lasted a short while the first time & I guess in my head I was thinking "I'll be eating properly again soon!"
Well how wrong I was! It's now nearing the end of January & I'm still no better with this & obviously as a result I have lost some weight - around 7lbs (half a stone) to be exact since November & you know there's a slight issue, when you go to see your doctor in December & she notices you looking thinner than when she first started seeing you in July!
Ok, as I'm using this as a record for myself as well as to give incite into some of the symptoms ME/CFS suffers have to deal with, let's be brave & talk numbers! At the beginning of August, I weighed around 9stone 4lbs (130lbs) (I like to be around the 9stone (126lbs) mark but allow myself to go over slightly, knowing that I can drop them if I feel the need too) Toward the end of August, as I said above, my appetite went & a dropped a couple of pounds but then once it started back up again & I was eating normally again, I gained the 2 back. So now over September & October, as with most peoples weight, I lost a little & gained a little but when November hit, I was back to 9stone 4lbs (130lbs).
It was then that I again started feeling like I didn't want to eat & feeling sick when even thinking about what I should eat for any mealtime! Towards the end of December I'd dropped down to 8stone 11lbs (123lbs) & this is my current weight! I will say that over that time I have managed to gain a pound or two but very quickly I've lost them again, though thankfully right now, my body seems to be hitting 8stone 11lbs & not dropping lower. So although I'm struggling to keep the weight on when I do gain it, at the moment, I'm only 3lbs lower than I like to be. That doesn't mean I'm not concerned or worried in anyway, obviously not wanting food is a serious problem so don't think I'm happy about losing weight, I've been there & lost all I wanted to!
Now the reason I guess I'm writing about this subject (which by the way, I've been putting off because even just writing about food & appetite is turning my stomach) is because I want people to know the full range of symptoms that go along with ME/CFS & sadly this is one of them.
But the weird thing with this one, I'm finding, is that it isn't as variable as some of the other symptoms. For example, some days I'm aching all over & other days I'm in so much pain, I just want to cry & scream out. But I haven't found that one day my appetite is better than another, I'm finding that everyday the thought of having to eat makes my stomach do indescribable turns, plus because of the other wonderful symptoms (holds up sarcasm sign) I find it hard to actually cook a meal for myself as I struggle to carry pans & stand up for long lengths of time while cooking (It's a good job I like my toast lightly done, or I wouldn't be able to make that!) & I have found that I have to be careful how full I fill the kettle as I struggle to lift it & I have begun to sit myself on the kitchen side as I wait for our quick boil kettle to do its thing!
It's here now that I should say, for the record, that although food is having this adverse affect on me, it doesn't mean that I'm NOT eating! As with everyone else & especially other ME/CFS suffers, I know food is important, my energy levels are low as it is & I need food to keep me going & help fuel me to do even the smallest thing, like getting out bed in a morning. This is why, despite the fact that I constantly feel ill, I force myself to eat as much as I can (granted some days that's more than others) stomach each day.
I have to say that having a couple of people helping me tackle this has been & is amazing! My mum is amazing, she never forces me to eat & hardly asks what I want to eat, I usually just get told when my dinner is ready & I force myself to eat as much as I can of it (if you've ever had my mum's cooking, you'll know that it's not to be wasted, it's so good!) I've also had the support of a good friend (who shall remain nameless) who'll now & then bring take away with them & share it with me, they joke & say "I know you'll only have like 5 chips & be done, but at least I got you to eat!" The same person brings me Hot Chocolate now & then from McDonalds, which is a welcome change from drinking Tea & helps feed the addiction I'm developing for it So much so, that on the rare good day & I feel up to driving, I usually end up at the local drive through getting myself one!
So you see, I am eating, maybe not as many calories as I really should be but still I'm certainly not going without food & I'm hugely thankful to my mum & my friend for helping me through this. Knowing they are there, is a great comfort. Oh & while I'm on the theme of thanking people, I really should say thank you to Kellogg's for their Nutragrain Oat & Chocolate granola bars! These has been a lifesaver for me, as when I really can't stomach a proper lunch, (which is now turning into everyday) I have one of these with a cup of tea as sometimes they are all I can really stomach during the day. They are filling, contain fibre & iron & obviously chocolate (can't get much better really, healthy cereals plus chocolate!) so are much better than either a biscuit or nothing at all!
So until my appetite decides to come back from what I'm hoping is just a winter break, I'm just going to have to keep trying to eat what I can & not worry too much, as. I think worrying about it, can make it worse. As a little note here, if you are reading this & you know me personally, I ask of you a couple of things;
Firstly, not matter how wonderful your intentions may be, (which I am truly grateful that you care!) don't try & force food on me, if I say I don't want it, it's likely that the sight or even the thought of said food item, is making my stomach do dances. Insisting I have something is only making it worse & leaves me struggling to force anything else down for the rest of the day.
Secondly, no matter how thin I may seem to be to you, please, I beg, don't comment on my weight. Saying things like "You're wasting away", "there's nothing too you", "don't lose anymore weight" & (the best (sarcasm sign) I've had) "you are eating aren't you?" are all very upsetting to hear, especially since, now after reading this post, you hopefully understand that I simple can't help it right now & I'm trying my best to stay at a healthy weight for me because, believe me, I look in the mirror some days & think how thin I look too! I do understand the concerned & caring place these comments may be coming from & I do really appreciate it, but please keep in mind, I am ill & sadly this is one of many symptoms I'm having to deal with daily.
For those of you here to understand ME/CFS; I hope that you now kind of understand another struggle we suffers face & I ask that if you know someone with this illness & this symptom (as not all do) that you don't try to force food on them, that will only make them feel worse, putting meals in front of them will help but don't complain if they don't eat much. Just be grateful they've tried & had something. Hot chocolate or Tea may help too!
For my fellow suffers; I recommend Kellogg's granola bars to you if your struggling to eat anything. They're tasty, go well with Tea (& coffee I imagine) quite healthy & may help keep you going through the day when nothing else food wise seems appealing. I also ask if anyone of you out there has managed to deal with the whole lost of appetite thing & can recommend anything to help kick start mine again or has any suggestions to keep the weight on until it improves, please leave a comment. I really do need some help with this one!
Well, I think that's all I'm going to say on this matter & from putting off writing about this, I've certainly gone on for long enough!
So all I'll say now is...
Take care & laters!