Carers: What would we do without them? And what do we do when we get a bad one?

So Monday is going to be a big day.... I have new carers coming in... Again.

I have been through 2 care agencies already and now I am onto my 'long term' team, who will be with me for 12 weeks.... Because THAT to the disability world is 'Long Term'.... Yeh, thats what I thought too....

SO yes, first I had my emergency care team, they were with me for 2 weeks, then I had my START rehabilitation team whose goal was to stay with me for 6 weeks..... they have lasted 2. They have given up and are going home... no i'm joking really, they did my assessment and have realised I cannot be rehabilitated in my current condition... Well NO SHIZZLE SHERLOCK!! Seriously they were lovely ladies, bar one -if you're reading you know who you are and what you did!!- but the whole system is mental, and I mean more mental than I am right this second. I have Paralysis from the hips down, and I have mild to severe (apparently according the ME Association) M.E, and they actually thought they could 'rehabilitate' me within a few weeks.... I laughed at the concept a time or too and the carers laughed along side me, because we ALL knew it was ridiculous. How can you rehabilitate – oh my gawd I sound like a repeat offender being let out on parole or something- someone with M.E or Conversion Disorder in 6 weeks, or in actual fact- EVER?

If the medical profession hasn't found a cure/proper diagnosis system/ or actually anything to do with ME OR Conversion Disorder, then what were my council thinking when they sent a Rehab team around? I mean come on, seriously??

The first day they came in I was greeted - woken out of a dead sleep by a stranger would be more apt - by a woman I shall call.... Daisy. And she proceeded to tell me exactly what THEY were going to do TO ME. The expectations they had FOR ME. And the goals that I was to MEET by the end of their assessment and rehabilitation period (6weeks). I tried to explain to this woman, as politely as I could to a total and utter stranger that I had been woken up to find standing over me in my home, that I would try my hardest to meet those goals but that I would inevitably have good days and bad days.... to which her reply was... DRUM ROLL PLEASE... 'So you're not even going to try then?'... She was one of those special people i think who doesn't understand, want to understand or even care about what ME actually is and does to people.

Well we did not have a great carer/client relationship from there on out really, she wouldnt take the time to understand my conditions, saying it was a WASTE of HER time, and that she would treat me as if I was a normal patient, a fully functioning, non fatigued, non everything patient....

This was my reaction:

Bless her, she tried. But as you may have gathered from my threads, if someone does something that I believe is wrong I am right on the phone, email, smoke signal and telling someone higher up about it.

I dont believe in letting people who are doing something wrong get away with it. The last straw was her leaving me in my wheelchair for 4 hours, unable to go anywhere, do anything, or transfer myself back into my bed. It nearly killed me for many reasons, the main two being; a) if I had fallen asleep (as those with ME are prone to do <insert sarcasm here>) then I would have fallen out of my chair and probably not woken up – probably leading to a hospital visit for suspected head injuries, and b) because I had to keep myself awake, on a BAD DAY, when all I wanted was to relax and nap and do whatever I can to get myself through to the next morning.... but nope, she knew better. Then I knew better when my social worker just happened to get a phone call, who then just happened to make a phone to what just Might have been her boss, asking for her to be taken off my rotation.... Bye bye Daisy.

So yes, on Monday I start with another Care agency, for 12 weeks so that I can start advertising for a Personal Assistant who will be both my carer and my companion/taxi to places I want to go to that I can't get to now.... The park to give my Pippin a run, to the garden to feel some fresh air and sunlight, or heck if i'm having a flipping EXCELLENT day maybe to the cinema.... Cause thats the way I roll people!

So, I am looking forward to meeting these new people who are going to be looking after me, my life basically in their hands, and I hope we get on alright. After all these people are helping me live my life, yes at the moment all my energy is going on dissertation writing but thats still living!! But the boss of the new care agency might have got a phone call already from someone sounding like myself, asking them to come fully informed of both my conditions and that if they did we would get on like a house on fire.... Awesome Sauce alround me thinks!!

Monday is a big Day!! But also a sad day because the lovely carers that I have had from the Rehab team are leaving and along with them goes Gerda (Freida), 'Toilet Sheila' ( I ay or may not have fallen asleep and scared the crap out of her), Emily Dickenson (because I could never remember her real surname), my old nanny/carer Audrey- who still knows how I like my hair brushed and head rubbed to calm me down-, Barbara (margaret), Esmerelda (imelda), Angela and Caroline( whose name I could only remember because I just watched season 2 of The Vampire Diaries :S). They have worked tirelessly and with complete and utter compassion that I just want to grab them all and give them a HUGE hug... because they were fantastic!! And I am sad to see them go, Because your carers become such a huge part of your lives and its only when things change or they are gone that you realise just how hard life is without them, I defintely don't think I could stay as up beat as I am, most of the time, without them:(

So yeh i'm talking about employed carers, but I havent even scratched the surface on familial carers!! But I think thats another Blog post!

Oh by the way peeps of Blog reading land... we Totally got to over 700 reads total last night!! Well Done and keep up the good work!!