It seems like every few months there’s a new miracle cure for ME, or there was at one point. They do seem to have calmed down a bit over the past few years or maybe I’ve just given up looking. Anyway, years ago, when I had my original official diagnosis so that’s ten years ago, the ME specialist I was seeing recommended some supplements for me to try. Over the years I’ve tried various versions of them and I think some of them do seem to help, though it may all be psychological if they have a positive effect then I’m happy to keep trying them. This post is going to be about these supplements; the ones I’ve tried and whether they worked or not and why.
Before I start this post properly I feel like I should include the standard disclaimer, that I am in no way a medical expert or professional and these are merely suggestions and things to consider. Also definitely consult your GP or doctor about any supplements you might want to try, especially if you’re on medication as you never know what could clash and cause problems. I know that some of my medication can’t be taken the same the as certain supplements so it’s worth checking. Also I’m not saying that supplements are definitely the way to go but they might be worth considering or asking about.
I’m also including a couple of links for each of them but it’s worth doing your own research if you’re considering trying any of them so you can see if they’re likely to have any benefits. For example if you already eat a lot of oranges vitamin C is unlikely to be something you’d get much from.
Sorry if this turned into a bit of a wall of text. I’m always a bit hesitant about posting the things I’ve tried for my M.E. especially when it’s anything diet related but I thought I’d do a bit of a post about a new diet that I’m trying because it’s not something I’d heard of before and see if anyone else has tried it, whether it was a success or not. Before I start I am definitely not a doctor or healthcare professional in any way and if you do decide to give this a go then do research and even check with your GP if you want, I did.
One thing that I do get, which is apparently fairly common with M.E. patients according to an M.E. specialist I saw a couple of years ago, is post prandial hypoglycaemia (which I hope I spelled right!). Basically it means that a few hours after eating my blood sugar levels dip but, instead of just feeling hungry I actually almost faint. I say almost because I’ve always eaten something sweet when it gets to that point rather than test if I actually would. It’s like the effect diabetic people get but without diabetes (yes I have been tested for it, multiple times). This Low GL diet is aimed at getting your blood sugar levels even rather than a yoyo effect of highs and lows which can make you feel worse energy wise, never a good thing when energy is at a premium like with chronic illness, which has a knock on effect with energy, fat burning and generally feeling healthier.
The time around Christmas in general is really draining, I think that probably goes for most people anyway, so energy is definitely at a premium and after everything leading up to it I don’t have anything left when it comes to the boxing day sales. At the same time I do live sales shopping, and not just for the amazing deals you can find, it’s always been a bit if a tradition to go sales shopping title he nearest city the day after boxing day. Boxing day itself is a stay at home, relax and just watch TV kind of day anyway for my family, the crowds would out me off even if I was healthy unless there was something I really wanted.
Since having M.E. I have been surprised how much I do miss the sales shopping and have found some ways to still enjoy it so thought I’d post some of these tips, even if it’s a bit late for some since the sales are probably half empty in some places (the Lush sale in the UK seemed to sell out in boxing day itself). Continue reading
I just got a new phone so all photos in this post come from the camera to see how well if works.
I love making cards it’s one hobby that’s fairly easy to find cheap materials for and it’s low energy as you can make them as simple as you like. It’s also fairly low energy, or can be, as you can spend five minutes in a simple card with precut things and out everything in a tub to go back to later.
A few of the things in the post I’ve had for years but a lot is from Hobby craft this year if you see something you want to get yourself. I could do a haul post with links and more details if you want to know how to get each one.
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 think it’s a fairly universal thing with ME but this recent heat in the UK is really not helping my symptoms. It seems to make everything worse so I’ve ended up finding ways to cope with the heat. I did a pot on this last year so I’ll link to that post that has tips and ideas on what to do to make the heat more bearable, it’s here if you want to read those ideas.
The past few days has mainly been either staying inside with the windows open but curtains closed and my hot water bottle full of ice or in the shade in the garden with the paddling pool we bought yesterday. If you don’t have one and you have the energy to sit outside I definitely recommend this for when it’s this hot. It dies have to be big, just one you can sit in would be enough as it makes a surprising difference and it’s nice and cooling to even put your feet in it in the evening and imagine you’re somewhere abroad.
As my brain is kind of foggy at the moment I thought I’d do today’s post as part ME post and part blog like thing and post a few photos from the past week, mostly from today actually. I think I have posted most of these to my Instagram so if you follow me on there sorry for double posting, I won’t do it often I just liked these photos. I was thinking about doing a my week in photos type post on the weekend, not things from Instagram but other photos, but not sure as I don’t really do much most of the time. Continue reading