Change is something I love when I have full control over how, what and when it happens. I’m a little bit of a control freak and either 100% wing it or will plan something within an inch of my life. Change however that flies at me left right and center and is beyond my control I don’t like, not one bit.
In 2012 I spontaneously decided to move to Australia, booked the tickets and a matter of months later I was boarding a plane to move to the other side of the world on limitless adventures with my daughter and then partner – at this time I just had widespread pain with some worsened joints… this had barely changed much as they were issues that slowly appeared when I was young. I didn’t have to think about much apart from what I wanted to do and when I wanted to do it. My options were so minutely limited I didn’t even pay attention to how much independence I had.
As I said back then the pain was normal, manageable and nothing out of the ordinary it barely held me back as I knew no different. I just plodded along with the same generalized pain – I still had bad days but they were much more few and far between, I bounced back then and usually put it down to over doing it.
Fast forward 5 years life is a whole different ball game. I never in my life thought risking having a bath alone would land me in hospital. I didn’t think I’d be having to ask people to open packets of crisps and bottles of drinks because it hurts my hands. It’s a huge change and a very hard pill to swallow.
This post however is not meant to be me ranting on and feeling sorry for myself it’s far from it it’s me trying to explain that stubbornness and feeling like a burden in these situations is completely normal to anyone else going through this. Who wouldn’t feel this way after losing over 50% or more of your capabilities and independence? Who wouldn’t be frustrated that the things they never used to have to think about make them need to nap or take medication just to cope?
Heck I know I’m doing great by just getting up every morning and doing the best I can. I’ve learned to roll with it and I’m still learning now. There is no miracle cure yet for chronic illness – hence why it’s chronic. So some days I just have to realize how big an achievement it was that I showered and got dressed, other days I can be proud I done much more even if that’s still only doing small things to some people as to me its huge. I need to start realizing what I am achieving and being proud of myself again.
I need to stop pushing past my limits and causing more pain to make myself feel ‘normal’ or useful because the reality is my illness doesn’t make me useless – pitying myself and dwelling on what I can’t do, over doing things and making myself bed bound and crying, does however make me useless. I need to learn my limitations – retrain my brain and its going to be a long process but I have my team behind me every step of the way. We all have those certain reasons why we carry on so focus on that and remember why you’re getting up and not giving up because the reality is. Somewhere out there someone would kill to still be in my shoes.
I know it’s hard for my loved ones as I can be a ball of anxiety feeling like the world’s biggest burden (and like to shout this at them at 3am like a loony telling them to leave me) but like they keep assuring me if they didn’t want to do it they wouldn’t be here.
This honesty shows in the simple acts they do second nature like opening drinks before I even ask them to, hanging out the washing when I haven’t realized and stupid little things like forgetting why I use the disabled toilet on nights out because I can’t cope with stairs. Because to me this shows they treat me no different and is all second nature to them because they care – they don’t look at me as disabled they just look at me as Amy the same girl they met all those years ago.
If there’s a few important things I’ve learned from being different is that you can’t do it alone, don’t push people away because you think they will be better off, don’t make a big deal of them doing the little things for you because half the time there not even thinking about it so why should you dwell on something they don’t even think twice about.
Most importantly don’t give up, accept the help, embrace the support and love those people with all your heart because the reality is these people are the reason you carry on and they are on your team 100% behind you because they want to be.
You only get one chance in life, these are the cards you’ve been dealt – they may not be the ones you were originally planned or hoped for when they were being dealt out but they are the ones you have now. So learn how to play your hand the best way you can.