May 12 Blog Bomb 2016 Post - ME Awareness Week

Knowing Your Limits Does Not Make You Negative! // May 12 Blog Bomb // ME Awareness Week

Hi guys!  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, ME Awareness Month offers an opportunity to really highlight the impact of the condition in the press and among professionals and the general public”.

May 12 Blog Bomb 2016 Post - ME Awareness Week

The reason that ME 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.

ME Awareness Week / #May12BlogBomb

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.

May 12 Blog Bomb 2016 Post - ME Awareness Week

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!

Never miss another post from me! Click below to follow me on Bloglovin. If RSS or social media are more your style, check out my sidebar! Follow

10 thoughts on “Knowing Your Limits Does Not Make You Negative! // May 12 Blog Bomb // ME Awareness Week

  1. Brandi Clevinger says:

    Sally has a great blog bomb! Such great stories shared there.

    There is great hesitation to trying new activities because we are afraid of the unknown; however, we are only limiting or cheating ourselves. I’m getting better at trying new activities, and more often than not, I have a great time, and glad I did it.

    • Katie Cupcake - Life with ME says:

      She really does, it was an amazing idea to start the blog bomb! 😊

      That’s great that you’re trying lots of new activities, I wasn’t able to last year but I’m that tiny bit better this year that I can try things like hydrotherapy 😀 xx

  2. Rhiannon says:

    I agree with all of this, I know when I was first ill I ended up making a lot of plans and cancelling them or getting part way through before feeling so awful that I had to stop. It took me a while too to learn what I can and can’t do and I still push it for some events but you do learn the limits to what you are capable off without after effects and it’s sort of balancing whether whatever you’re planning on doing is worth the time recovering afterwards. I like the nettle comparison, I think I might have to use it in the future when people say I ‘should be doing more’ and ‘you never know until you try it’ kind of things.

  3. Krisitne says:

    I loved this Katie! I have ME along with FMS. It’s the ME that causes that ‘blood in my veins replaced with cement’ feeling that can sometimes come out of nowhere. The title of your post caught my eye, because I was recently in a ‘conflict’ with a couple of people who’s main issue with me at the time had to do with my ‘negativity’. Although they had a few valid points, later I realized as I was beating the crap out of myself emotionally, that over the past year, there are times when I have been feeling absolutely horrible but I push through my obligations anyway. I came to this conclusion: I DARE them to experience what I do on a day to day basis in THEIR bodies, and we’ll see how ‘Positive’ they act. If they can do better than me, well, more power to them! I put your post in ‘favorites’ @ the Chronic Friday Linkup ~

    • Katie Cupcake - Life with ME says:

      Aww thank you so much for reading and commenting! I’m sorry to hear you were in a conflict. People have no idea what we go through every day. Imagine how much people moan if they have a virus or flu for a week…I think we’re pretty darn positive given the circumstances!

      I’m glad you stood up for yourself. Feel free to show them some of my posts, so they can understand what it’s really like being chronically ill!

      Have a lovely weekend xxx

  4. Emma says:

    I’ve been a spoonie for so long I’m fairly good at managing my time and spoons, and I’d guess most people who encounter me, even close friends and family have no real idea about how much time I need to recover, or what kind of effort goes into appearing normal for the times I am able to show up and interact with the world.

    At heart I’m a spontaneous person, but managing my spoons often means planning weeks ahead so that I can participate in the things that are important to me, as a result friends have come to think of me as reserved when it comes to invites and although they still occasionally invite me to events at short notice they assume I won’t be able to attend. When a friend invited me to a BBQ on a day that I happened to be well rested with no other plans, they were shocked that I was so eager to show up, expecting my usual “I’m too tired” ‘excuse’ they marvelled at my (natural) spontaneity.

    I guess the major problem with hidden illnesses is that our troubles are hidden, as so few people get to see us at both our best and worst, and general positivity masks much of the daily struggle we face.

    I had norovirus recently, and while I don’t imagine it’s ever a fun experience, I’m certain it didn’t mix well with spoonie life, and I was feeling pretty dire. My dad very kindly showed up with paracetamol, and food and tissues, and when he saw how miserable I was he couldn’t just accept that I was feeling rotten, he was genuinely disappointed that I wouldn’t put a more positive spin on things, and that I insisted I really felt awful, and didn’t think I’d be any better the next day.

    I know it’s human nature to want the best for everyone, and wish everyone a speedy swift recovery, but it’s really very disabling to have our experience tempered and to be bullied to conform to the polite “I’m very well thank you” standard of society. As a spoonie I feel bad so often it’s boring, and I’m unlikely to share this information with you. If I tell you I feel rotten, then I really genuinely feel rotten, and no demand for a more positive attitude is going to improve things for me. Just accept that when I feel sick I feel sick.

    • Katie Cupcake - Life with ME says:

      Hi Emma, thank you so much for reading and commenting. Sorry to hear you’ve been unwell for such a long time. I know what you mean, a lot of us are naturally spontaneous people but spontaneity is near impossible with chronic illness! Everything has to be meticulously planned to get enough rest beforehand and recover after – not much fun.

      I feel like most of us are naturally positive people – I mean we still stay upbeat and have a sense of humour, despite feeling like hell on a daily basis! So to be told we’re negative is pretty offensive. Sorry to hear you’ve experienced the same xx

      • Emma says:

        My guess is it’s a fairly common experience with invisible illnesses! … if you’re upbeat people see even less of the illness than they would otherwise, and sadly it’s easier for society to interpret limits as negative rather than pragmatic.

        Good luck with the future, hopefully your friends will learn to accept that you know your own mind and that learning your limits is a positive step in managing your illness, and allows you to better plan your time – even if like me you’d really much prefer to be able to be spontaneous!

        • Katie Cupcake - Life with ME says:

          Very true! That’s why I like to blog about my experiences with chronic illness, so there’s a truthful account of what it’s like. Pragmatic is exactly the right word! That’s exactly how I’d describe my attitude.

          Thank you, good luck to you too. I’m sure we’ll both grab those odd better days with both hands 😀 xx

Leave a Reply

Your email address will not be published. Required fields are marked *