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.
This weekend, on June 4th, after studying with the Open University for six years I finally went to the degree ceremony (the OU doesn’t seem to call them Graduation ceremonies as we graduate when we get the degree in the post). The local one to me was in Ely Cathedral and I think it’s definitely the most impressive setting of the ones I’ve seen when it comes to these ceremonies. We’d been there a few years ago to have a look around after finding out about it but it somehow seemed even bigger on the day.
A while ago, I think one of my first ME posts, was an OK is relative post and I said about doing this one then, so far I haven’t actually posted it yet, at least I don’t think I have so that is today’s post. If I have already done this then hopefully this will be slightly different, I couldn’t find it on the blog but it might be a bit of brain fog, either thinking I’ve done it and I haven’t or just missing it when I searched.
I think most people will go through phases in their lives when what they think of as normal will change, either suddenly or over time, and it sometimes takes a while to really notice how much the new normal is different to you before whatever it is happened. For me the thing that has changed my normal the most is definitely ME, I think it will probably have a similar impact on anyone who has a chronic illness. I didn’t even really notice how much my ‘normal’ was different to what it had been a few years previously until I had to fill in a form, I think it was the census, that asked about disabilities and how much affected what you were able to do as an everyday thing.
It’s graduation season, or it is here in the UK, and as the ceremony thing for my degree is coming up I thought I’d post about the things that have been suggested or are going to be in place to make the actual ceremony easier. If any of you are graduating congratulations! It’s a big achievement and, although it seems a big day and a lot to do on the day, it can be a great way to celebrate the fact that you’ve finished along with others who have done the course though it is a bit intimidating with everything that you have to do on the day.
Since finishing my degree I’ve been kind of nervous about the actual ceremony, whether I’ll be up to it, whether it’ll be too much and I’ll end up feeling ill part way through or become dizzy or something when I’m going up to get the certificate. Also the fact that I did this all at home, through the Open University, it’s a bit more detached than it would have been in a brick and mortar university. I have to say that the people in charge of the special circumstances for these events with the OU have been great and have suggested all these things I wouldn’t have even thought of.
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.