Heya,

Sorry I haven't been around much! I’m in stupid pain and putting up with RSD. Hope you are all ok!

Well, my cripple equipment has now arrived and I'm really pleased with the bed - it's awesome - as well as the normal things you expect a hospital bed to do (rise up/ lower to get at the right height for someone to dress you, back up/ down, feet up/ down) it also has tilt - and so, I can tilt forwards or backwards up to 30 degrees! It means if I'm tilted I can now see out of the window, I can see the TV, I can have conversations with people instead of trying to talk whilst flat! and it means I can set the stars up (thanks Artist!). I am now living in the sitting room which is better because I am now more involved in what is going on and am now longer isolated away in my bedroom. YAY! even mum agreed that me being in here is not as bad as she thought. As before though I got quiet at my side of the house it meant I could go hours without seeing anyone which is annoying if you fall out of bed!

Unfortunately the paralysis is still here and I'm just going to accept it's RSD and start trying to pull my life together again. Have also decided I am going to go away this summer and I don't care where, so I am now busy planning a great holiday! I don't know where to go yet, but hopefully somewhere warm!!

My care is still screwed up. I am currently being looked after by my sisters’ boyfriend (Ben 2) who I have only met about 10 times, but he has taken time off so he can stay home with me. (Mum has gone away to a gardening show up in Birmingham and left me to the care of my sister for 2 days). He is lovely but I'm not sure I want to share everything personal in my life with him. I am so upset with my sister, mum specifically asked Char to keep the 2 days she was away off so that she could stay at home with me. Instead Char worked a late shift yesterday and an early today and is baby sitting this evening so instead leaving me with Ben who has never known anyone disabled at all and is after all my sisters’ boyfriend that I barely know!! Char is expecting me to be happy that he is willing to try and feed me or lift me or dress me. Yesterday I insisted she got me changed and because I winced when she grabbed my leg she left me hanging in the hoist whilst she had a temper tantrum and went “fine, if that’s how you’re going to be I won’t help” and stormed off. That WONDEFUL behaviour gave me a pressure sore and I’m SO cross about it. She has just made me feel so useless and just a pain in the **** that nobody wants to have to deal with. She won’t respect that I’m a vegan and cooked meat last night, then said it didn’t matter because she couldn’t be bothered to feed me anyway. So Ben had to sort it out. And she has taken my car without asking me. When she got me into bed last night she didn’t bother with any of the positions I am supposed to be in and just removed the sling and left, nothing like being stuck on the side with the pressure issue anyway and unable to move, not even with my head on a pillow and with me half way down the bed. I know it’s stupid but she has managed to make me feel stupid, really disabled, guilty of asking for any assistance, vulnerable towards her moods (which are totally uncontrolled), she has made me feel pathetic, stupid, a waste of space, a frustration to be hid away. I HATE being dependent on people so much, but when she does things like this it just gets to me. Before the last month or so I have rarely cried, only from either extreme frustration or extreme pain but now it feels like I am having tears of frustration and pain almost daily (unbelievable for me). It’s obvious that she doesn’t care, so why is she bothering. It’s not like I want to live my life like this either. I just wish some days I could give her this for a day or two, so she’d know what it feels like to be scared, to need to move, but to be locked into a body of pain and concrete which twists out of control whenever it feels like it. To learn how it feels to know you can’t fight back and that everyone has total and utter control over you – they get you up, put you down, carry you around, drop you, the could murder you and you couldn’t do a thing about it. You are a brain already buried in a coffin of a useless body. To feel that you are such a burden and are ruining everyone’s lives and knowing that if you weren’t there then they would be happier. Knowing that, at least with her, she would get no choices, nothing she wished for would be respected, nothing she asked for would occur. She would be given the minimum care to stay alive and then shoved wherever.

Molls: LOL, well you are sure beating my sister Char! and carers always need chocolate to keep going! No-one exciting has got to see my freshly healed lap yet dammit!. How is the total fish diet going?? (S), I spent loads of money on tapes and books at the weekend. Also I have re-found the joy of Radio - especially 4 and 7! How are you doing?

Artist: are the storms still that bad? Hope they calm down soon! hell and damnation, that's not even close to how I frustrated I am! See PM dr soon so am planning on begging for an epidural, I mean if I was a horse or one of my animals I would have been put down by now, so drs should be realising how bad it is and actually treating it.

Kathy d: Hi, thanks! How do you not go insane spending so long in bed? I can’t handle it I get so bored and frustrated. I am on low dose oral Ketamine as my “main” painkiller (like you guys take Vicodin or Percocet etc) and I find it works very well for me, I’m no where near pain free but it does help and has helped with the sensitivity. I have almost no movement from the neck down and so I have to be transferred by hoist at the moment. At home I can’t get into the bathroom but we are waiting for a tilt in space/ head rest/ postural support commode thing which can go over the toilet until the extension is built on. (I am going to have my own bathroom with hoist access so it will be so much easier then). Who is doing your ketamine therapy?

IHH – as ever babes! Thanks!

Imahotep – that’s what I’m doing! I’m currently planning my entire world trip and where I’d go in every country!

Moonstar – thanks honey! Can the CPAP be improved for you or is it something that will take time? I know when I had HBOT I HATED the masks so much because they were so constrictive. Do you feel better/ clearer headed since getting it and being able to get 3 hours good sleep? Hope you are ok!

Sandel – Thanks Sandel! How hard was it to learn about dream wave? I like the idea of keeping a blog, that would be pretty interesting and actually I would love to go back to writing. I wrote most of a book a couple of summers ago and then got frustrated with it and deleted it. You are right about a hobby being any thing I am interested in… Hope you are ok!

Thanks everyone for all your help and advice! All my love and hugs and sorry about the moaning!

Frogga xxxxxxxxxxxxxxx