I feel like every year I manage to miss M.E. awareness day, or week depending on which you choose to do, and this year I only realised today that it is in fact tomorrow. I haven’t really done many posts on M.E. recently, I felt a bit like I was repeating myself at times and the new post ideas I’ve had I just can’t really get started on, they are coming at some point though!
I’ve done quite a few posts on M.E. in the past, especially around M.E.A.W., so this is a link to previous ME Awareness Week ones (and some tagged M.E. Awareness Week too because apparently I did two tags). I’d say if you’re interested in my story then this post is a good place to start and the spoon theory is always useful as a way to introduce the idea of M.E. and how it affects us every day.
As I’ve covered a lot of M.E. topics I thought this year I’d mainly post about ways people are raising awareness and ideas on what you could do, most of these are very easy as they’re aimed at people who may be severely affected by the chronic illness as well as those who aren’t.
I started the Low-GL (Glycaemic Load) diet eight weeks ago, there’s a post with a bit more about it here if you want more information on what it actually is. I have to say that when I hear the word diet I automatically think of not being able to eat much, feeling hungry or avoiding carbs but I have not found that I missed anything in this diet.
The main idea is to have the right proportions of a more carb heavy food, protein and a lot of low carb veg so it turns the carb into a more slow release sugar rather than having the peaks and lows that I was having before.
I started this as it’s a bit of a different version of the Low-GI (Glycaemic Index) diet that was recommended by an ME specialist a couple of years ago. I tried Low GI and I just couldn’t work it out so ended up giving up as it didn’t seem to work but it may be more to do with me failing to get it right. With my ME one of the symptoms I have is post prandial hypoglycaemia, though I don’t have diabetes my blood sugar drops low a few hours after eating so this diet was recommended to even that out.
One of the first things that seemed to get lost when I was first ill, and gets thrown out of the window fairly often when it comes to set backs, is a daily routine. When I was first ill I was at school so there’s an obvious routine and, like any time someone’s ill, days at home and no energy meant things like getting dressed every day or getting up at set times sort of disappeared.
I think when you’re first ill then it’s obviously not the top of your priorities to keep up a routine but when you’re well enough I think it helps quite a bit with having a more ‘normal’ day if there’s a bit of routine. Of course this does tend to disappear whenever I’m ill or don’t have the energy to do these things and it’s very hard to get back into one when you’ve broken the routine for a few days, or weeks sometimes. I think that’s why I often include some of these things that people would consider everyday things in my goals.
I’m not saying this works for everyone, I’m not a doctor and only going by my experiences over the past twelve years, and I’m kind of writing this to remind myself and try and kick myself back into a proper routine.
I think this is something that happens to everyone at some point, whether you have a chronic illness or not, when you don’t have a schedule or things you have to do with certain time scales it’s easy to lose focus. I always find I work best with deadlines, whatever it is, even things that aren’t work, like shopping, I find that if I don’t have a focus, something to aim for, I get a bit distracted and can end up coming home with things I don’t need or didn’t plan on getting.
Since having ME most of the time I’ve had some sort of goal, some time scale to aim for. Until this time last year I was pretty much in some form of education or other for most of the time and the breaks between were a few months and pretty much planned in there to have an aimless few months and recover energy and have some kind of social life (not that it was all that successful on the second part most of the time but oh well). Since finishing the degree and now having nothing to aim for I have found my focus disappearing at times. I didn’t even really notice it until recently.
Sometimes it feels a bit like I get stuck in a rut, with ME and not having the energy to really go out much it does get a bit monotonous sometimes. I also tend to find that sometimes I just feel like doing something new, some way of making a bit of a change. There are only so many times you can change your wardrobe or move things around in a room though and I’ve found that learning new things is a great way to make a bit of a change.
I don’t mean do a course particularly, or learn something like a language or other more school like things, though if you want to do them then fine. I have been meaning to go back to German and French but I just find that retaining information isn’t all that great, at least short term though my long term memory is great which doesn’t really help when you have to remember a phrase you learned yesterday. I mean more along the lines of a hobby or a small skill that’s a part of a hobby. Things like learning how to do a certain thing in card making, embossing is something I’ve wanted to learn for a while, or trying a new hobby altogether and just doing it enough to learn how to get better at it to a level you want to. This way there’s no pressure from courses and deadlines and these days there are so many websites and YouTube videos on pretty much anything you can think of you can go into as much or as little depth as you want.
I think one of my first posts was about computer games and I haven’t really done much about them since. I’m not sure how well they fit into my blog but as computers and technology in general is something I love writing about and games are a great escape they’ll stay in here now and then. I have to say that I am one of those people who sees games, wants them, buys them on Steam and then plays them for a few hours and they get forgotten. There are various reasons for that but one of the big ones is my ME and the energy it takes to actually concentrate and play. Add in the fact that I don’t really have any friends who play computer games, actually not many friends in general due to being housebound most of the time anyway, and that some of my favourites that have been started are ones that my computer can’t handle and my list of games I can play becomes limited.
I wish I could play more computer games, I have more than enough time for it even with starting the business, blogging and volunteering for the website I do which is probably the opposite of most people. I like how you can escape into another world, whether the game is remotely realistic or not, even the most pixelated and outdated games can be a great escape. I kind of wish I could find a good Dizzy version (the 80s game with the egg) as I loved the one I had even if I did get stuck at the same place for so long. I did find a version of the old Lion King, Aladdin and Jungle Book games we had that took like ten floppy discs each back in the day. I think it’s the nostalgia in those cases, they’re games I played when I was growing up before I got ill so it doesn’t matter how bad they might be they’ll always be amazing to me.
One thing that I often forget after having ME for so long is how some of the things that take me so much energy are actually time and energy saving things for other people. One example of this is eating out. My family has never been one of those to go out and eat all that often, I guess living in a village without a pub probably helped with that as it’s a bigger thing to drive somewhere than just walk down the road. I sort of only really realised how often some people eat out since being ill, it’s like it’s sometimes a case of ‘I don’t feel like cooking, let’s eat out’ as a last minute thing.
To me, and I think this is something that is similar for a lot of people with ME, there are so many steps for this small thing that affect us that it becomes this ‘big event’ whether it is or not. When getting dressed and ready takes energy then things like sitting in the car, walking to the restaurant and waiting of finding a table are all energy draining to some extent too. Then things in the restaurant; too much light, or too little, conversations going on around that can be distracting and draining and having to sit up in chairs that often don’t have that much support, they all take energy. I know they do to people without invisible illnesses too but it’s a lower percentage of the overall energy taken in the day so this small thing of sitting and eating lunch or catching up with friends that is part of a shopping trip or something that is surrounded by other activities for most people is the only thing we can do in the day sometimes. And then there’s the knock on effect afterwards of having to pay for this for a day, maybe three or four or even a week for some people.
All of this does vary person to person, I know some of the things that don’t take me much energy take a lot for other people and some people can do things I can’t without it having too much of an effect. Part of it is learning what we can do but events like going out will always have some kind of knock on effect.
I know a while ago I started to post about various hobbies that might be possible or things to look into if you have ME as something to do. One thing that I have found useful and a great stress reliever when I have the energy is writing. Whether it’s writing a diary, writing stories or writing blog posts it helps a lot at times.
One thing with ME that I found hard to deal with at first was how isolating it is, it was quite depressing at times and the whole situation was frustrating to me. I found that writing helped me to get away from it, to escape for a bit. I know it does take a fair amount of energy sometimes but there are smaller things you can write that might help you to feel better like finding and writing down inspirational quotes for on a wall or writing down what you’ve achieved today in a diary.
One thing that I’ve heard a lot since joining various ME related groups is that it shows you who your true friends are, although this might be true for quite a bit of the time, it seems a bit harsh really. As I only have the experience of being the person with ME I can’t say about it from the other side with this illness but I know from having people I know go through other illnesses that it’s hard to watch someone you care about go through it. It doesn’t help when the person is ill with something that no one really know what it going on as I think a lot of people with ME take a while to get a diagnosis and any chronic illness, being chronic, has to be a longer term thing for it to actually be diagnosed anyway. I know when I was first ill it was at least a year but I think I’ve heard it said six months now for it to be ME/CFS rather than a Post Viral Fatigue thing.
I try not to have many regrets, there’s not much point dwelling on the past and things we can’t change, but probably the one I do have is that I lost contact with a lot of people who I probably would still be friends with now. I know that some of them it was because I couldn’t make it to things and the constantly changing plans or excuses probably got a bit much and I can get that but it’s probably a bit from both sides.
I don’t know how often you guys get this but it seems to me that throughout the years of being ill one of the attitudes that seems to come up fairly often is that because I’ve accepted the fact that I’m ill that I’ve just given up. It took me a while to accept that I did have these limitations, I know early on not long after my diagnosis I did end up trying to plan to do too much, I ended up having to cancel plans like going to live bands which affected other people as well as myself and it was mainly because I just didn’t accept or understand how ME would affect me and stop me from doing these things. I just eventually realised that it’s better not to try and make these plans and stick with the smaller scale things.
Of course there are times that I break this rule such as family holidays or big events but I still know my limits and have learnt to recognise the warning signs telling me to stop or accept the way I’ll be feeling afterwards. The thing is that even these things that are big for me, going for a trip to see family who live hours away and sitting in the back of the car wears me out for example, wouldn’t be a big thing for most people. It’s surprising what takes up energy and you only realise these things when you don’t really have any of it to start with.