I’m going to keep this post short, though I seem to always say that, as I know how hard it can be to read a wall of text if you’re not feeling good. I don’t think I’ve done a post like this before really but I thought that, as well as saying what ME is and sharing a bit of how it feels I’d share some of the main pieces of advice I wish I’d had when I was first ill. Over the years I’ve heard a lot of different things and these are the ones that I think would have helped me more when I was first diagnosed.
Some of these may seem slightly negative but I don’t think they really are, overall I think I’m pretty positive about life in general but at times you have to be realistic and I think in the beginning, when I was first diagnosed, I didn’t realise some of these things and was looking at the short term which did not help my health in the long term.
Another ME Awareness Week post, and I realised that I haven’t actually said what ME is in this week. I think I did a post about it last time, or early on in the blog, but I thought I’d do a post about some common symptoms as it isn’t just the chronic fatigue, which is probably the most obvious to anyone who knows people with ME or who has heard the other name Chronic Fatigue Syndrome.
I think that a large percentage of people with ME tend to first become ill with ME after having some kind of infection or bug, it seems a lot of people I have talked to over the past twelve eleven and a bit years seem to have had glandular fever but it’s often after a time when your immune system was weakened due to illness. There are lots of debates and different research reports out there about the various reasons why certain people get ME when others don’t but no one can agree really so I’m going to stay away from all that and suggest you look up for yourself if you want to know more, there are new theories popping up all the time.
This may seem like an odd way of explaining it, but hopefully it will make sense by the end of the post. As the theme for ME Awareness Week, at least in some places, is the idea of understanding what it’s like to have ME I thought I’d do a post of how it feels like, or rather this post is sort of more how it felt like to start with, this feeling does sort of go away after a while but it still sometimes sneaks up on me again.
I’m not sure how much sense this post will actually make, my brain is rather fuzzy, and it’s definitely not the only aspect of my life with ME, I might do a post on something else later in the week as I did think of including more aspects but it got a bit long and like a wall of text, so this is just the parallel worlds, two lives kind of thoughts I’ve had. Also I will say before I start, these are just my experiences, obviously it won’t be the same for everyone, maybe no one else feels like this at all but I think at least some people might be able to agree with me or know what I mean with this post.
It’s weird, when I was first ill I wasn’t really sure what it was that was wrong, which is obviously a bit scary when suddenly you can’t do anything that you could before and lots of people thought it was either just me being over the top after being ill and not wanting to go back to school or that I wasn’t actually feeling as bad as I was. As I was so ill I didn’t really have the energy or concentration to think of much, the first few years are mainly a blur of staying in my room broken up with events that I went to that I was probably too ill to go to and I can’t really remember properly anyway like seeing bands live or school events.
This week is ME Awareness Week, though to be honest it’s been a bit confusing this year with the dates as almost all of the sites I’ve found seem to say that it starts on Wednesday 11th, which seems a slightly odd day for an awareness week to actually start, so I hope I’m not late as some places are saying the 9th, it’s a bit of an odd one this year. Throughout the week I am planning on doing an ME Awareness type post each day alongside my normal posts, these will probably mainly be short ones about various parts of ME that people might not know or resources that would be good to blog about, tweet or post anywhere to raise awareness.
The idea behind ME Awareness Week is to do things that helps to bring awareness to people with ME; what it is, what it feels like to have it or a week to emphasise fundraising. Different charities have different themes, though the general idea of wearing blue seems a popular one this year. It’s not very well publicised, at least in the past it hasn’t been, and this year it seems rather confusing with different dates on different charities but I think the fact that it’s days focussed on bringing awareness to something that a lot of people don’t know exists is a good thing, whether I have this on the right days or not. These posts will continue until Tuesday as that’s means I’ll have done five posts (I don’t post on weekends, though I might make an exception here) like I do in a normal week.
This is just a short post as I decided that this year I am going to be better prepared for my posts in ME Awareness Week and thought it would be nice to include one of my daily posts with links to other people with blogs about life with ME. This year ME Awareness Week is 12th – 17th May so there’s a while to go and I will be linking to this post in any ME related posts that I do until then too.
I know I only post once a week about ME so I’m not the most frequent blogger when it comes to this so the blogs don’t have to be exclusively ME related. I just think that,as well as bringing awareness to the actual illness of ME, it would be nice to bring awareness to bloggers with it as well. It also means I won’t be copying exactly the same posts this year as I did last year, though I will do a master post type post at the beginning with links to my old ME blog posts too.
If you want me to include your blog in the post then leave a comment, or if there’s someone you follow who you think should be linked leave a link to them too. If it isn’t your blog make sure they’d be ok with me posting a link but I will probably leave a comment on their blog checking they’re ok with it too. There are some people I follow who blog about ME and related illnesses alongside other things in their blogs so I’ll be trying to message or comment on posts by anyone I follow who I think would be interested in this blog post, but if you’re reading this then it’d make sure I don’t accidentally miss you if you could comment in this post.
I’ll be posting about this on twitter too, probably nearer the time, so anyone with an ME related twitter account feel free to tweet me @thoughtfulpige1 or, if you have a blog on another platform and no wordpress or twitter account then you can always email me at email@example.com.
Thanks for reading this, it doesn’t matter if you follow me or not for this so don’t feel like you have to if you post with your blog link here. Hope you’re all as well as possible and having a good week.
This post is a work in progress, there will be updates when I get new links
This is the last of my MEAW posts, I think it continues for two more days but I don’t blog on the weekends and I only had the five ideas really so this is the last of them. I hope someone has found them informative or helpful in some way 🙂
I have to admit that before I did my research about charities this week I didn’t know of that many, I think there were three that I could have named. I thought that adding links to some sites for ME charities might help if you have any questions about it or might consider donating to an ME charity in the future.
Most of these links are charities, there are a couple down the bottom of the list I included because I was either not sure if they were actually charities but were interesting anyway or because it has a link to international ME sites. I didn’t link the actual international sites purely because I can’t tell what most are saying as I don’t speak the language and don’t want to include something here that I’m not sure of. If anyone can read them and say what the site is about then I’ll happily add them to the list.
I’m not sure if physical energy is the right word for this but I just wanted to make a post about the different kinds of energy we use up every day that you don’t actually notice if you don’t have a chronic illness. Physical energy is the obvious stuff like exercise and going shopping, the surprise for me when I was first ill was how much energy is used when you don’t actually feel like you’re using any.
Cognitive energy can be used up in different ways, like different levels of activity use up different amount of physical energy. Smaller things can be having a conversation with someone or listening to a book, larger activities that are more obvious can be things like watching a new TV show or movie, having a conversation when there are a lot of people around with other conversations going on. It tends to be that the more focus you need for an activity the more cognitive energy you use.
This isn’t really a review, though it kind of is, it’s more posting about this book so people know about it as I think it’s a good way to get people to understand about M.E. through the different pieces written in it. Over the past year, maybe more I can’t remember when this started, two volunteers from the charity AYME, Katherine Langford and Jet Spero, were asking members of the charity to send in art, poems, stories, photos or anything else creative really to make a book out of. This is that book. It’s full of creative things made by people with M.E. and the money from this book goes to the charity itself.
This book is available from two places; amazon here, and the other is a smaller online shop here. It’s £6.99 whichever you get it from, though as I got mine from Amazon there is a print in the front saying it’s printed by Amazon, copies bought from the other site may not have this, I haven’t seen one of those versions. I also found it in the Barnes and Noble website if you’re in America, it’s on sale for $9.36 here. If you’re somewhere else in the world I think the other site link would be the best bet and see if they ship to you, though in my search one of the top results was Australian eBay so it seems to be travelling the world!
This is something that I have found very useful over the years after finding it when it comes to explaining how it feels to people who don’t have ME. The spoon theory can be found here, though it’s been posted about in a lot of other forums and a quick google search will throw up a lot of results. I think this is the original place it was posted and the website has a lot of other useful and interesting pages, though they’re written about Lupus I find that a lot of them relate well to ME and probably quite a few other invisible illnesses, especially when talking about pain or the way people react to you with an invisible illness.
I’m not sure if it’s a worldwide thing but in the UK this week (May 11th to May 17) is ME Awareness Week so I thought I would try and do an ME related post every day. I’ll also be doing my normal posts today and Friday as I have them partly written so these are extra, I don’t think I could keep up the daily posts I did last week, I’ll run out of topics!
Anyway, as it’s ME Awareness week I’ve got five posts I’m going to do, hopefully they’ll be interesting. ME Awareness Week is all about bringing awareness to ME (the name says it all) and hopefully improve the understanding of the illness as it’s not one you really learn or hear about unless you know someone with it, at least that’s my experience. It’s like you get cancer awareness month and things. I have seen people posting about ME awareness Day but I haven’t heard of that before, maybe it depends on what charity does it because I’ve only really had much involvement with the one.
I thought I’d start off this week with my story about ME, how I was diagnosed and all the fun that went with it, though my story is pretty simple compared to a lot as I was lucky with my GP from the beginning.