Heya...

newest issue is...

I have no equipment! Social services apparently thought I would somehow manage to be able to carry the hoists down with me and my bed - I pointed out that as it was it took my mums van, half my friends Jeep and my car to get all MY stuff home and my wheelchairs without working out how to fit an electric hospital bed, pressure mattress, hoist, slings and all the other rubbish that makes up my life into the car.

So. As my care has fallen through it now means I have no carers, mum is at work full time AND no equipment meaning that I can't get any carers in to work for me unless I am happy to be bed and bed pan bound until social services can provide me with the equipment that I am supposed to have. (I can't really be lifted at the moment because of the paralysis and my shoulder and as I'm not supposed to be lifted anyway because I'm 100% unable to weightbear with two destroyed ankles and osteoporosis no agency carers are allowed to lift me). Therefore I am now spending 18 hours or more a day in bed which is horrible if you can't turn or move at all independently, I am getting so frustrated especially as I'm in "my" bed - a water bed, which I just can't move at all on. I was in tears by the time mum came home through the frustration of being really uncomfortable and knowing that I have now got (another) pressure sore because of being in bed on the wrong mattress for too long. Agh!!!! It is so frustrating.

I keep telling myself to pull myself together and just get on with it but it's so hard. My shoulder is still not right and even having it strapped is really painful, I am going to ask my neurologist if he can check it when I see him next week because it has now risen about 3 inches higher than the other shoulder and collar bone. Stupid pain is so frustrating I just want to scream from it. However, on the good side, the burns I got from the heat bag - no dressings needed anymore!! they have healed okish! WOOHOO!! at least that's one thing I'm rid of!

The paralysis is continuing - I am still pretty scared by it but am trying to move on with it. I'm not going to let it continue to destroy my life. I think I'm just going to have to accept that this is what my body is doing at the moment, and although it's unfair, and horrible, and scary the only way to control it is to try and get used to it and retain as much independence as I possibly can - but that's going to be hard until I can get proper care in.

With the carers it's strange. I guess I hadn't really realised to what degree I had deterioated or how much help I need. I'd always told myself that I had 24 hour carers when I was at uni because I was away from home, I can't transfer/ go to the bathroom/ feed myself/ dress myself/ wash myself/ cook etc and so they'd be doing the "mum" bit with abit of care. However, suddenly I realise it's so much more and it takes up so much time. I have to be turned at night, repositioned in my wheelchair, have my splints on and off and on and off and on and off.......... meds, stretches, physio, someone with me whenever I leave the house. It's even more so now when I realise I can't change a radio station because I don't have environmental controls at home. I can't answer the phone, I can't let people in, I can't control the animals. It's scary realising how much this has impacted me and my life and I guess I mentally gloss over it, but being at home really make me realise.

Also - any suggestions. I am bored to tears. I can't use videogames or hold books (not until I move into the other bed). I spend alot of time "resting" because of the stupid migraines (Still have the amazingly horrible sunglasses to go with the horrible migraines!) and have some books on CD which are copied to my hard drive so I can turn them on independently. If I have my headset on then I can use the computer. But that's it. So - any ideas for trying to break the monotony of pain and the frustration and just... general AGH levels! I really need some form of hobby or something (shudder, the thought of turning into someone with...... HOBBIES! scary thought!).

Also, I need some thoughts on how to survive this weekend - Mum is working two 12 hour shifts (8am - 8pm both days) and I will be on my own (as no hoists delivered). So any ideas how I will manage? at the moment it looks like we may end up just having to catheterise me for the weekend or something.

Molly: as ever, thanks babe! S's fits are very similar to mine and I agree - they are horrible! My sister hasn't been home since I got here and is too much in "love" with new boyfriend to care that I am stuck in bed for 18 hours at a time because she can't be bothered to drive the 8 miles to our house to get me sorted. It's VERY frustrating!

Liz - thanks babe - your walking stick sounds awesome!! one of my wheelchairs is barbie pink - hey, disability isn't a must, it's a fashion choice (well. that's how I choose to look at it!). I had pair of amazing bright green crutches when I was on them and they ROCKED! they were so cool! Also my splints have always been painted by artistic mates so they look awesome! What type of dog have you got? I know what it's like - I have 2 dogs and now 4 cats and they all think that slobber helps!!!! they are so perceptive though! I just wish that they didn't think that by sitting on the most painful part, or licking it, would be the most helpful.

Artist - meant to say this - with taking the tablets with alcohol we were attempting to make them work more effectively without increasing the meds because of the ketamine issue. However, it always makes me feel horrendous the next day and makes the spasms/ cramps/ pain worse - but at times you need something to increase the potency.

Thanks Moonstar - how are you? did you get the CPAP in the end? I really hope they managed to help you with your sleeping problems.

Mary - Thanks! I use all of you lot as inspiration to kick me in the butt mentally when I get lazy or if I am being miserable about the RSD. For any of us to do anything at all is amazing, the fact that many of us manage to have semi normal lives is just amazing!

IHH - what is there to say? love you babes and hope things improve for you soon, thanks for being there!

All my love and hugs and thanks

Frogga xxxxxxxxxxxxxx

Wot?! You've blown my cover! Now you know that my friend with RSD has a terrible "carer" who staggers around in pain, can't walk half the time, has no energy, and is miserably depressed. And eats all the chocolate.

As for this weekend: You must call your mates and say H.E.L.P. What sort of help? 1. Get van and haul your equipment from uni to mum's house. 2. Haul their selves to your mum's house for Sat/Sun. 3. Overnight mail 20 books/music on CD. This is NOT a time for pride. You have a nice freshly healed lap to show off and display.
xoxoxoxo

Hey Frogga,

Just a quickie to say Hell and Damnation to your bedridden state, I'll try and think of ways of passing the time. BUT we've got major storms here, lasting for the next week they say - so I'm darting in and out of the net as the storm rolls over. Lightening blew out out the ethernet port on my favourite laptop last week (drat!!) - so I'm taking no chances!

I suppose your mates are now dispersed all over the UK, are they? Hmmm.

OK, big thunderclaps, be back later xxxx
all the best, huggies..

Dear Frogga,
Boy, you are really having a bad day. I know the toilet thing can be tough to do properly especially if your balance is off. Maybe you could get some type of commode toilet to keep in your bedroom and just hang in there until your balance gets back.I had Lidocaine IV done in June 2006 and I couldn't even lift my head off the pillow because later I fainted and could not leave my bed for 5 days. I used a comode and I hated it but it was the best thing for me to do since everytime I got up I would start to pass out because my blood pressure was too low. I am on the waiting list at the doctors for the Ketamine IV in-patient procedure,which I hear is supposed to be much toughier than the Lidocaine procedure. Are the pills you take now a follow-up to the Ketamine IV treatment you had previously?? Just curious so I know what to look for when I get it done within the next 6 months to a year.

I feel for you being in bed so much because I have just spent about 2 1/2 years in bed too. I've just learned that I can't do a thing about it so I make the best out of everything. I find humor and prayers get me through this RSD nightmare. You have to keep your mind focused on getting better and being stronger. I now say to heck with everyone else and do the best I can each day. Sure there are days I want to jump off a bridge from the pain...but there are no bridges around here and I can't even drive a car to get there:.) So, I keep moving on. I pray that your days are getting better as I pray for everyone on this web site.
Take care,
Kathy d.

((((HUGE HUGS)))) and lots of love back to you!!

Things better start improving soon for you!! I wish I could send you some spoons... but I am barely making it through each day... wish the extra spoons would just appear in our hands!


Sorry about the way things have been going! You are so strong- stay that way. You are such a sweet person through all this rubbish and you always try to help others even though you are in a ton of pain. Sending lots of love!

You might try investigating something using the net.

The net is a poor tool for many such things and this just makes it more challenging.

hi my friend...so very sorry that things are not going great for you these days..i am sending you all the strength i can tonight--you are not in an easy situation --it really sucks to have to depend on others the way we do--but somehow we seem to get thru each difficult and painful day-can't say how we do..but we do..yes i did get my cpap machine..it isn't working as well as i had wished..but i am at least getting 3 hrs a night before ripping it off my face..i seem to be sweating so badly that my tie-dyed t-shirt seeped thru and stained my pillow all pretty colors..
wish i was closer to come and entertain you while you are stuck in the bed--i will try to think of some games to help..but my brain doesn't seem to be there for thinking much these days..mindless tv is what i seem to space off into--
i will write some more tomorrow..rain is on it's way and pain is extremely high..wishing you a peaceful night--moonstar

hello..
How about a hobby like web$ight designing?
I took a dreamweaver cource last year that I realy enjoyed.. there are online classes too..

Here is an example of an online cource offered here in Canada for people with disabilitys.. I havent yeat

http://www.cssd-web.org/

I hope things improve for you soon frogga and I must say that I admire your attitude emensly hon and I have read and been inspired by your posts and your adventures at the uni.. have you thought of mabie writing about your experiences say to magazines and school papers? some of your elevator miss-adventures for example made my toes curl.. and they don't do that.. people need eye openers.

Say a hobby idea that can broaden awareness of RSD.. many hobies can be something that you feel passionate about, say one that incorporates some of that drive you have.. that in itself can make the day an adventure for you..

*a blog where you can express yourself and yes help some other people adjust to their situations too.. see there is no reason you cannot help people as you have planned.. this way too*

A hoby is what ever peaks yr interest .

Big soft hugs

Sandra
Pssst.. Have a spoon or 2 on me.

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

I just wanted to say hi and to let you know I am thinking of you.

You know you really need to follow your Drs. orders to go to the hospital to be taken care of. Maybe they will be able to give you some help that the Drs. can't in their office.

I'm sorry that things are getting worse for you and hope you start feeling better really soon.

Ada