Hello again dear Reader … Well second blog underway today after much thought.. Well actually not deeply planned thoughts as if I’m writing that Opus that’s been trapped inside my creativity ,but the scary ones about someone you love who is obviously not well but won’t hear you begging them to listen.
The illness I have which as you know is a ‘deliciously ‘ unsolvable one, is stopping me from being physically there for this person I love. I can offer shed loads of verbal advice, by phone email text and occasionally face to face but what do you do when you see someone getting more and more confused, in denial etc etc… I’ve lived with the horror of Suicide ,one Parent with Alzheimer’s , cared for a dear dear Son with M!E. – all of which I would willingly do again for the love of them.
Love never stops not true true love.
When you have ill relatives you get swept up in coping helping supporting..
That’s as it should be. No question.
You , and, if you have a partner/husband /wife/ significant other …covering my bases here with today’s myriad of titles… spend your life apart from working juggling trying to do the best you can ,yet somehow it never feels enough, the guilt and worry goes off the Richter Scale.
The person I love and am watching now is floundering ; they have been through so much in their lives , a fiction book wouldn’t cover it, but how do you know when to truly and completely Step in… Stepping in , not in number 10 hobnail boots , but preserving dignity which MUST be a given for all humans and most especially those who have reared us.
I have been hete before..
What’s that I hear you say? I should know the drill, where to go for support , what to do next shouldn’t I?
Well dear Reader it’s not as simple as that because it depends entirely on their personality their rightful need for independence.
It depends on how you can get to them for help.
It depends on trying to keep a marriage together,you love each other but you get so emotionally exhausted.
when you sit down after a long long day of not seeing your other half, if you have one, you need to catch up, sort work, sort life and for a minute just ‘be’.
These things have to be taken into consideration.
Seemed to do it so well before… Older now in poor health.
The thing is this person I love with all my heart has had a terrible year emotionally and they are exhausted but they are no longer young. Outwardly they look young but when you REALLY know them you know things aren’t right… So what do you do if you are housebound to help?
Well you get on the phone to organisations etc but they can listen offer advice but unless that person goes to see them themselves can do no more,
What do you do when you see that dear dear person so forgetful so muddled and yet still coping in some ways so not considered in need of help.
When you can’t physically get there yourself because you have had two operations ….
What do you do when they give you a ticking off that you haven’t rung ( you have rung or texted ever day by the way) when they tell you they have rung your number but YOUR phone isn’t working …it is by the way.
I may be whittering ,indeed you may have logged off or dropped off… But the dilemma is a mountain it makes conflict with your better half when you are both trying to keep your head above water… To pay the bills etc etc … Balance theirs, go to hospital for operations, procedures constantly.
You quietly ring their GP but you know something they can’t talk to you about your nearest and dearest understandably… But they can and have shouted at you for not bringing them in for an appointment even when you start the conversation… ‘ I have just had heart surgery back op so am immobile, …’
I used to have a sibling but they committed suicide so now you are the only child the lynchpin the safety net .. And you’re own net has such massive holes a killer whale could swim through them.
The truth is there are no easy solutions . You just want to look after them but they are cross lonely struggling and won’t admit it,
So dear Reader if you are still awake any thoughts? Do you have empathy for this conundrum….
Bloody tough isn’t it.
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…..