This is my first Blog. I’ve never done this before, often thought about it but thought ‘what’s the point no one will read it’.. But I’ve got to a stage in life where Tweeting in Twitterworld or posting on Facebook waiting for a ‘like’ just so you know you are not completely alone isn’t helping.
I have a long term illness. It’s not an illness that fits into a neat box or can be given a nice snappy one world title. This is not meant to dismiss anyone with a long term illness. It’s just mines a weird one. But then it’s great to be unique isn’t it? I’ve always liked being an ‘individual ‘ hated assumptions about the sort of person I am.
I’m just… Well I’m just me … Like you dear reader are …. Well…..
I’m also a vain ole bat who likes to put on the slap make sure the hairs ok… But this is misleading to even Doctors because no one realises this is my Armour, my Confidence Shield to keep myself upbeat. I don’t do it for anyone but myself …. Well maybe for the hubster who really doesn’t need to see a ‘snarly haired limp lettuce in pj’s ‘every day of his life.
That’s not the woman he married. That woman could dance on the tables, sing embarrassingly in pubs, shop til she dropped, work hard, play hard.
She’s still here inside , dancing laughing singing but , as the saying goes the mind is willing the body’s a crock of shit.. Well perhaps not quite that but every day I wake now I think ‘Today’s the day I will be me again’ but I’m older I don’t bounce back like I should and it’s happening less and less.
I had a great social life but when you have to cancel evenings out a lot the people who stick with you are whittled down to single figures.
These are your true friends.
We live in a ‘busy’ world a world where we rush to work, rush to play, rush to pop money in a charity chiggers tin then rush away again. Say things like I must ring this person visit that person if only I wasn’t so ‘busy’
I have the refrain ‘when you are better I will do this or do that with you” said to me regularly but what is not being absorbed is that after 12 years of my ‘limp lettuce illness’ it’s not going away. I have fought and continue to fight for help with an illness that has no research funding because there’s so few with it. And yet it’s a real physical illness, I know 5 cardiologist and heart surgery can’t be wrong but the drugs don’t work as the song goes and it’s not going away.
So ‘busy” doesn’t help.
I’m not stupid I know people have to work. My husband and I own our own small business. Thank god for the Laptop, IPad The World Wide Wait etc so I can work from bed or sofa to help pay the mortgage etc etc.
But folks the illness ain’t going away. The people are.
I’m not really Eeyotre, I’m Tigger. I’m cup half full (unless it’s a weekend when it’s glasses half full).
When I was a child I didn’t foresee this …. I have dreams goals plans but I’m trapped. I can still laugh think offer friends emotional support because I try not to let my Illness define me.
I paint – not interior decorating painting but Art. I get stuck into history discussion forums for that is my love is history. I bash away with my wee fingers at keyboards and boy do I fight to stay visible.
But the drugs don’t work. The house is empty. The heart is hurting physically and emotionally. It needs feeding with ‘busy’ people; their lives their company . 20 minutes 10 even …. ‘Pop by do ‘ I say …
Remember it could be you.
We all need the sight sound of humanity.
Don’t be ‘busy” be there…..