I thought I'd give you all an insight into another aspect of life with M.E. That is the world of medication and intolerances. Again this is all my personal experience and no doubt other people have different experiences.
I've never been on a lot of medication since getting M.E. I was on strong painkillers (naproxen) for a number of years but after realising they were partly to blame for the spaced out feeling, brain fog and fatigue I was experiencing, with my doctors consent I stopped taking them.
Since then my doctor has been reluctant to put me on any other strong painkillers due to the potential side effects. Instead I take paracetamol and ibuprofen for the pain when I need it. And by when I need it, I mean I only take it when the pain is at its worst; it only ever takes the edge off and I don't see the point of taking something if it doesn't really help.
I take a multivitamin most days since my diet is really quite poor, I eat the best I can but some days it's a real struggle to eat at all so I just eat what I fancy, and not what is healthy. The multivitamin helps boost my weak immune system and means I pick up fewer viruses and infections!
Then there's Omega 3 Fish Oil. I take this each morning and find it really helps reduce my brain fog and headache for the day. I find it very noticeable if I forget to take this one in particular.
Finally I take an anti-histamine during hayfever season, nothing to do with the M.E. other than the fact it helps reduce the hayfever symptoms and therefore the amount of stuff I have to cope with!
All in all I'm of the opinion that unless something has noticeable benefits I won't take it. For all I know it might in fact do me more harm than good. I'm not saying this approach is right for everyone, far from it. If my doctor prescribed me something they were sure would help, I wouldn't dismiss it straight away, I'd give it a try. But what's the point in taking painkillers that don't help ease the pain?
With M.E. comes the risk of certain intolerances. In a sense I'm lucky I only have one or two of these. But they do make eating out difficult. Currently I am almost intolerant of alcohol; I can have one or two sips before I start feeling quite dizzy and suffer as a result, so I tend to avoid it.
The more troublesome intolerance I have is fresh dairy and milk proteins. This is a difficult one to explain but I shall do my best. I should say I only found this out by a process of elimination! After eating any fresh dairy products or something with 'milk proteins' listed on the ingredients I get quite ill; nauseous, upset stomach and lethargic.
For this reason I now have to avoid anything that is fresh dairy and also have to carefully check ingredients of other products that contain milk. Easy enough I hear you say? Wrong. You see I can tolerate dried milk powder, dried whey powder etc. It is literally the fresh stuff and milk proteins my body dislikes. Although this gives me the benefit of not having to exclude everything that contains milk out of my diet, and means I can still enjoy a nice cup of tea made with dried skimmed milk, and ice cream if made from dried skimmed milk, reading the ingredients of items whilst shopping is not all that easy. Especially since the Allergy Advice will list milk if it contains milk powder or dried whey which I can eat. I have to check the ingredients list for 'milk proteins' or 'proteins from milk' or however else it could be worded.
When it comes to eating out things are even more difficult. How many dairy free desserts do you see on a menu or even in a shop? How many main courses come in sauces which may contain cream? Or have cheese on them? Sandwiches are most often made with buttered bread or an unspecified margarine which may or may not contain fresh dairy products. If I ask people they do their best to find out for me but even then they don't always know. If I choose something but ask not to have the dressing/sauce whatever aspect that might contain fresh dairy or milk protein, I can't always guarantee that special request will be met. There's always an element of risk when selecting an item off the menu, unless I stick to something I'm sure is fresh dairy/milk protein free.
Parties, barbeques and family gatherings also pose a problem. I don't like to be troublesome and have to request a dairy free selection but then again I don't want to make myself ill by unwittingly eating something that contains fresh dairy or milk proteins. So I have to carefully select what to eat from the selection available or take something dairy free to add to the buffet. (Luckily for most family events we contribute something, so this isn't a problem).
All this makes going out that little bit more difficult. If I really wanted to play it safe I wouldn't go out anywhere and where's the fun in that? A food intolerance like this shouldn't be something that restricts me that much. The rest of the M.E. symptoms do that as it is, why should I let this extra thing restrict the bit of fun I can still have?!