ME Awareness Week 2016: Things I Wish I’d Known

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.

Do not push yourself too hard. It’s easy, especially at the beginning, to see a small improvement and think it’s all up from here and you can do way more than you could before. This may happen, but I have found over the years that it’s more likely that I would think I was better than I was, push and do too much and then end up back where I was before the improvement. Basically do push a bit to increase what you do but learn the signs of when it’s getting too much and stop a while before so that you have the same amount of energy the next day.

Try not to rely on sugar or energy drinks too much. This may seem fairly obvious from the outside but when the difference between being able to go to a barbeque or hang out with friends or not is having an energy drink it doesn’t seem that bad. However it does hide how tired you are and I probably relied on them too much, especially when I was first ill. It is also probably one of the reasons for me having to have so many fillings.

Use anything that will help make your life easier. I wish I’d used walking sticks, or maybe even a wheelchair at one time, when I was at my worst as they really do make a difference. Of course if your upper body is weaker than your legs then the walking sticks or crutches wouldn’t help but any aid that makes it easier for you to do as much as you can is always a good thing.

Realise how much you can actually do, which may sound odd, but I think that for a while I was in denial about what I was able to do. I don’t think I really realised how ill I was or how much it affected me as, near the beginning, I was either at the stage where I couldn’t do anything much and didn’t have the energy to want to, or I could see how much better I was than the months before so thought it wasn’t as bad as it was.

Do not expect a miracle cure. This one is a bit of a depressing and negative one and not something anyone wants to admit but if you don’t then it does make it harder to accept ME as an illness. It’s not one that has a pill that will make it all go away, it’s a case of managing it, and when you have a diagnosis of ME then you can learn ways of coping with it. This does not mean giving up on trying things that will help with symptoms, just don’t expect it to go away overnight if you do try any of them.

Try to keep your friends close. This is one I really wish I’d done. I’ve heard over the years that ME shows you who your true friends are and there is an element of that but I think it’s hard for them too, to see who you were disappear, especially if you’re suddenly severely affected. I just lost contact with everyone, I didn’t have the energy for a while and then it became harder and harder to bring myself to contact them. I am going to do a post on this, I’ve had it planned for a while but not known how to start it, I’ll do it soon though and talk about my experiences.

Join online groups, and not just ME related ones. It’s great to have an ME support system and advice, which you can only really get with people who understand how it feels. But I’ve found that some of the time the best places online have been unrelated to anything health based, like a group dedicated to your favourite music, a certain animal or a TV show or actor. It’s also a great way to reduce the isolation if you’re too ill to go out and I’ve ended up having a couple of friends from online groups who I would talk to every day and really helped a lot.

Ask for as many blood tests and other tests as possible from your doctors. I have known people who were originally diagnosed with ME who had something else, something that could be treated with medicine to help, after believing that they had ME for months or years. Any time a doctor suggests something new to test for I say yes, I think at one time I was going in for blood tests every month or so and having them for different things. I’ve been prodded and poked by different specialists and ME is still the diagnosis but if there was a chance of it being something else then I would take it. I know some people will feel disappointed with doctors who keep on asking for blood tests when it’s probably ME but I think if there’s a chance it’s something treatable then it’s worth at least investigating.

Find a local ME group or a specialist if there is one near you and push your GP for a referral. I have been on and off the books of the local ME clinic a few times and, even last year when I’ve had it for ten years, I still found it helpful. They will have information on possible treatments and know the other chronic illnesses or symptoms that are likely to be related to ME more than your GP. It’s how I got the diagnosis of POTS and was told that post prandial hypoglycaemia is actually a thing, that it was low blood sugar and the best ways to cope with both of them. I know it’s a case of luck when it comes to how good the services are in your area but the least that will happen, if you can get to see them, is that you will get it confirmed and they’ll have leaflets and things to check out.

I think I’ll stop there. I’m sure there are other things I should have included but it’s already grown longer than I meant it to. I hope it’s helpful to someone, whether you have ME yourself or you know someone who does maybe these will help. Is there anything you think I should have included but have missed out?

As part of ME Awareness Week I am planning on doing a post about ME bloggers, I think it’s a good chance to bring awareness of the people with ME as well as the illness itself. I’ve done more of a post about this here but if you want me to include your blog or you know someone who you’d like me to include in it then please either comment or email me at . Though this post is likely to be either this weekend or next weekend, so a bit late for MEAW, but we had relatives visiting on the weekend and it’s taken more out of me than I thought as well as MEAW kind of sneaking up on me.

I hope you’re all as well as possible and have a good week.


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