You may or may not know that it is *ME Awareness Week. If you’re a regular reader, you will already know that I have M.E. If you’re not, and want to know a bit more about the illness, I’ve written about that here. The purpose of ME Awareness Week is literally that – to raise awareness of this often very misunderstood chronic illness. As the charity Action for ME say, “While we work to increase understanding of M.E. throughout the year, M.E. Awareness Month offers an opportunity to really highlight the impact of the condition in the press and among professionals and the general public”.
The reason that awareness is so important is that it’s an invisible illness – it is misunderstood, hard to diagnose, and there is currently no cure (or even effective treatment). As ME can make you so unwell, sufferers often stop being able to spend time with family and friends, and may have to stop working. We can become isolated as we are stuck at home and don’t really get to be out in society. This means that others often don’t see the true toll the illness takes on their loved one. I went from working full time, exercising regularly, training with a roller derby team and spending lots of time socialising to being bedridden in a fairly short period of time. If you want to read last year’s ME Awareness Week post, you can find it here. I explain more of my story, from my symptoms, how my life was affected and how I imagine my future without chronic illness.
Every year, Sally Just ME sets ME bloggers the challenge to write a post about our illness during ME Awareness Week, in order to raise as much awareness as we can – not to mention to give people a true insight into how ME affects us. Last year she set a theme, but had so many responses that this year she is letting us freestyle it! We can write about anything we chose in relation to ME. As you may have seen, I do write chronic illness posts fairly regularly, but one thing I’ve never written about has been on my mind lately…
Knowing your limits does not make you a negative person!!
I used to manage to stay pretty positive when I first got ill, as I was too busy coping with everything and always thought, in the back of my head, that it wouldn’t last long. I think I always secretly believed I’d get better after a year or less….. almost 3 years later, sadly I was wrong! Once it sunk in that I wasn’t getting better (in fact, last year, I just kept getting worse), I found it a lot harder to be positive. A bit like grief, I think I went through denial, anger, sadness and a lot more emotions before coming back in a full circle to being positive again.
I had a few months mid-2015 where I really struggled. I just couldn’t manage anything I used to do, was fed up of being totally dependant on others and had started to realise I may not get better, leading me to a lot of ‘what’s the point’ moments. Thankfully the clouds eventually lifted and I ended 2015 feeling much better. What I want to discuss today though is not that kind of emotion relating to your overall situation, but something else that is often perceived by others as being negative.
Nobody knows what we can do without aggravating the condition better than we do.
It took me a LONG time to learn what I could and couldn’t manage, and how much I could do physically and mentally without making myself feel much worse. The first year or so of having ME is spent trying to learn how to pace, and making a lot of mistakes along the way. Sometimes you think you can manage something, as it seems so simple – for example making yourself a sandwich for lunch. When you’re exhausted, in pain and stuck in bed the following day, you realise that perhaps you’re not quite up to that task yet. It’s a long and discouraging process! Because those of us with ME spend such a long, difficult time learning to pace (under the advice of our medical teams), nobody knows what we can do without aggravating the condition better than we do.
So as you can imagine, it is extremely upsetting when someone interprets you knowing your own limits for you being negative! For example, I am very hesitant to make plans for anything (other than the necessary medical appointments). As ME is so fluctuating, I can’t say for sure that I can meet someone in 4 days time for a coffee – there’s no way of telling! Being someone that hates letting others down, this really makes me hesitant to make solid plans, because I know I’m at risk of having to bail on someone and inconvenience them. Even though everyone in my life knows this now, they will still ask the day before if I’m definitely coming…! I guess it’s human nature, but I’d be lying if I said yes!
I have spent long enough learning that I know my body and its abilities!
I can’t tell you how many times I’ve said that I’d like to go somewhere but would have to wait and see how I felt on the day, for people to say, “well just be positive about it, you’ll probably be fine”! I’d rather be realistic than overly optimistic, as it gives people false hope and will make them think I’ve got some degree of control over it. When I haven’t wanted to make big plans for occasions such as my birthday, some people (even very close to me) have said not to be so negative about it. I am anything but a negative person, but I have spent long enough learning that I know my body and its abilities!
Another huge one is that people constantly tell me I’ll get better – I know they’re trying to be nice and encouraging, but the truth of the matter is that there is no cure for ME and some (a lot of) people never recover. When I respond with that and say I hope so, but it may not happen, I get told I’m being negative! I’m not negative, I’m just seeing the facts as they are unfortunately. If I keep telling people I’ll recover soon and then don’t, it hinders me as I struggle to accept life as it is right now. My preferred way of coping with it all is to accept that I am very unwell, adapt my life to how it has to be and do what is best for me now but always with the hope for a brighter future.
How do you know if you haven’t tried?
People will sometimes say, “how do you know if you haven’t tried” – the answer is, I know from the past 20 times I tried to do something that physical and spent the next 3 days wishing I’d never been born!! The pain and exhaustion you can feel after pushing it too far is something you will learn to avoid at all costs, as it’s so horrible! Think about it – if you picked up a stinging nettle and it stung you, you would learn from that experience and wouldn’t do it again. You wouldn’t keep picking up the stinging nettle thinking that maybe it would sting less next time, or maybe it would stop stinging altogether if you just stayed positive about it! I hope I’m not sounding sarcastic as I don’t mean to be, I just want to explain it in a way that is easy to understand.
All I really wanted to achieve with this post is to shed a bit of light for those who have a loved one with ME, and to reassure those who are living with ME. You are (probably) not being negative, you have just learnt to be in tune with you body. You have become an expert in managing your pain and exhaustion. You are likely a whizz with quick and easy ways to get things done. You probably manage your time like a pro. You’ve become an expert at living with ME, and you’re doing your best every day. Keep going, stay positive (only kidding haha) and you’ve got this! If anyone tells you you’re being negative, just remember that you’re doing your best to protect yourself from further pain and exhaustion and you’re fighting like a warrior every day!
Those who are regular readers know that I’m generally a really positive person, and do believe in positive thinking, but I’m also a realist, so I hope this doesn’t seem overly negative! I hope this post has helped and that you’ve enjoyed reading it. Don’t forget to subscribe in the top right corner of my home page, and come back often! Leave me a comment and let me know what you thought of this post. Have a great day!
PS – if you would like to donate to an ME charity, you can donate to Invest in ME who do a lot of much-needed research – find them here. Of course there are other charities available too!