me, me, me

[Dorsetcharlie]

Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.

I am about to be really honest...really, really honest. Sadly, it's probably just going to sound like a moan but this blog is about sharing the reality of our journey. So here it is.

In the last 403 days I feel like I have become a non person. Every part of my life is about someone else. Every decision made is based on what is best for that person. I am looked at with suspicion, pity and irritation by health care professionals who seem to think that I should know what I'm doing. I don't.

I get up on a Sunday morning, make a cup of tea and shuffle in my PJ's in to the lounge to watch the Andrew Marr show to find that a Health Care Assistant has put Top Gear on...again. Oh, and they're sat in my spot on the sofa.

I make plans for Christmas dinner with my family which then get debated based on whether Jake will cope by people who will all have lovely, peaceful and private time at their house...HELLO, IT'S MY CHRISTMAS TOO!

I am expected to be able to plan every conversation in advance, anticipating topics and having images available. News flash - this is not possible. I am expected to be able to attend any meeting at the drop of a hat and to understand all the medical jargon and options and make sensible decisions.

I can't go where I want for lunch, decide it's a beautiful day for a walk at the beach, sit quietly on my own in a room, pop into Tesco's for some milk or have a lie in.

Recently a Consultant even tried to say it was my fault that Jake's medication hadn't been reviewed. Seriously, how much are they paying you?!

I have to be a wife, an advocate, a financial manager, a mediator, a housekeeper, a proposal manager (yes, I still have a job). This means I am failing as a friend, sister, daughter, auntie, daughter in law, colleague.

At this point I would like to say that I love my husband more than anyone or anything else in the world. I couldn't imagine my life without him and not putting him first is absolutely a non choice for me. That's the easy bit.

I am only human though and, although it probably sounds childish and selfish, I am finding always coming second, whilst being expected to be a constant and devoted advocate and champion, a little difficult.

My switch is always 'on'. I'm a bit worried that the fuse may blow.

Read more about our journey here: hopegoesupanddown.blogspot.com

[brighton88]

I do sympathise with you, as way back in 2007 when I was deep in recovery, I was constantly exhusted by home helps who would either not come and say they had, or come and do what they wanted, not what I needed done. Only exception was one male carer, who seemed to have a routine, that ended with sitting down with me to check in. I think that sadly this area is so poorly paid and over worked, those in need can be left out of the planning. When there is a relative on hand it sounds as though you get the brunt of it all, sorry to hear your story. I had a social worker who wrote and signed a care plan for me without even meeting me

[zainey-lainey]

if someone said describe a cold....the symtoms are common.. if someone said describe a brain illness the answer would include what you have wrote. but becoase brain ijuries are not a common illness Know one gets it!!!

if you can talk and walk then theres nout wrong with you to others- when it suits them!! ... but then when it comes to other things your not capable!!!. That coz they dont have the time or patience to let you try..

Brain disorder equals "your not right in the head" so folks take advantage,,,

i could so relate to what you have shared with us hun. and everyone else on here. so moan away coz we get it.... and thats why we are here for you. x

[brighton88]

so true

[Hidden]

Oh yes Charlie, and about bloody time you realised you're part of it too. It takes a long time for it to kick in. This is going to sound daft but this is progress - you have just made a huge leap in the healing process honey. Realising that there is now a big future ahead, coming to terms with what it means to Jake is big - but now you're realising it's your life too. GOOD FOR YOU!! You need to stand up for yourself a bit more, tell them that it's Jake that's ill but it's your life too and they need to start considering that too. I guess this is all part of you 'making time for yourself' from your last post, well good! Fantastic even! I'm sure I'm not the only one who has sat here reading this post nodding in agreement. Yes, this is all about Jake's injury and he comes first, but he's not the only consideration, you have to allow yourself some leeway in all this, make sure that his care plan involves you and your needs. We have a very quiet Christmas now but I make sure we 'do' the family thing as well, not all at once on the day because it's too much for him to cope with but we have evening/days where we have a quiet meal at friends/relatives houses to cover everyone so I get to see everyone and hubby doesn't get too stressed. You'll get there hon, it'll work out - but you know what? Getting it out of your system on here is a really positive thing, well done, I'm really proud of you x

[TwoCakes]

Hello Dorset Charlie. It does not sound like a moan, your comments are perfectly reasonable and understandable. I am a friend of a person with TBI and have been stunned by the patronising and unprofessional attitude of many of the medical and social care staff towards my friend's next of kin. I've written a 3 page complaint letter but my friend's family are too scared to proceed thinking it will worsen care. It's terrible that people who are giving so much feel this way. You keep speaking up for yourself, it's good to hear!