Hi. I usually post on the pn site but sending thoughts and hugs. I'm 28 but my mom is my support system and we have done family therapy which helped with communication. Could you do something like that? A feeling is a feeling and your allowed to have any. Did you tell your mom how it makes you feel?I know it won't take away from your pain but may help the coping issue. I think sometimes family wants us to be well so much that there way of coping with this is to make it seem easier then it is way easier. Kind of like a protection from them to not feel so much fear.I'm sorry and wish I had more to offer. Please hang in there.

my thoughts and prayers are with you froggie ... boy you are getting it good right now. support of family is so important and usually in short supply so i hear you there ... do you have any GOOD support people who really HEAR you? i hope so. joan

Hey Nessy...

Thanks hunny! I will get back to you!!!

Love ya tons!!!
xxxxxxxxxx

Hey Pono

Thanks babe! Are you ok? What happened? Sounds like you had a rough ride! The TBI sucked! I don't know whether I did much damage to my brain - it was more my spine that seems to have died - basically I was ill and fell side ways out of my wheelchair and landed on the base of my neck/ head and became temporarily paralysed from the neck down. I regained a tiny amount of movement in my right hand but it' gone. The worst thing I find is the mood changes. I don't have a good doctor and in the UK it is very hard to get treated well! My doctors will treat me if I go into hospital but as I am already hoist dependent etc and I get worse every time I go in mum and I have refused for me to go back in to hospital. It's so silly.

I long to find a magic cure but I know there is none out there. Any help you could give would be wonderful I just hate so much losing my freedom to some stupid thing with 3 letters !!! and being totally paralysed is so annoying! you can't do anything - I haven't been able to use my arms for much since 18 months ago, I lost the use to feed myself or type etc but since then I have got worse and worse and am now just not able to use them. AGHH!! oh well

Thanks so much for listening!!!

Love ya tons

Froggsy xxxxxxxx

Hey Ada,

It is rough but things always improve.

The attitude thing is just my mum doesn't want me to get worse. I sometimes think that without her I would have got worse alot faster - she has always been so strict about never giving up or giving in to pain or disability - her point is it's just part of my life and I need to learn to live with it. However I just wish that she would realise I don't LIKE being fed, I don't like having a commode or my bum wiped etc. Her attitude (and my sisters) both stink about things like this. I just wish I could get it through to her. I know that she is cross because she just can't handle this anymore but still.....

grrrr

love

Frogga xxxxxxxx

Hey Daniella

I love your name! how are you?

We had abit of family therapy - I guess it's that my mum is a nurse and she just wants me to get better and I'm not! and it drives her nuts. She just wants me to be back to me and can't forgive herself that i'm not. She keeps thinking if she'd have kept me walking, if she'd have done this. If she'd have done that then would thinks have changed - but they haven't. It's just so, SO tough and people just don't realise how hard it is on caregivers.

It just doesn't help when you are the person on the other end of her being annoying.

Communication - I have tried asking nicely, asking my carer instead, having tantrums and all of that but she still gets so frustrated.

I wish she could understand what it's like to be in a body that just doesn't move any more. It's so so hard.

Much love

Frogga xxxxxxxxxxx

Dear Joan.

Thanks!!! The problem is that people just don't understand. They listen but they don't hear me because they don't WANT to hear me because they might hear something that they don't want to hear from me. They are scared I'll say something bad or that I might upset their sensibilities or that they will have to admit that things change and that people get worse.

My friends at uni are good and some of my carers are brilliant. It's just that when my mum was 3 her dad developed TB of the spine and was unable to move for 3 years, then a couple of years later her mother broke her spine and was bed bound for nearlly ten and then in a wheelchair before finally managing crutches. My mum cared for granny for years before marrying and having me and my sister. In December my grandmother died of lung cancer and mum had nursed her through the last 10 years, and especially the last year of her life. Now she is doing it with me - I'm not dying, but she is nursing me. At Christmas she had two hoist dependent wheelchair users in the living room in the house and was trying to dress, feed, turn and sort us both out every day. (was funny though with her feeding me and then turning to granny and feeding her.. in an odd way!).

Well.. it's 10. 40pm and my sister works at the local nursing home - and as a special treat I am going to steal their hoist and have a bath... aren't I lucky??! so see you all when I get back!!!

Love ya tons and thankyou all!!

Froggsy xxxxxxxxxxx

Hi Frogga,


I have been watching your story with so much empathy since I joined this site. I do have many of your symptoms which have been assumed are my CRPS but I am concerned that there has not been a resolution to the problems that have arisen after your fall.
As pono said your symptoms are indicative of a brain or spinal cord injury and the nurse in me makes me wonder whether the assumption on behalf of the doctors that this is your CRPS gone crazy has overshadowed the fact that there maybe something else happening that could be rectified.
Of course I don't know what tests and investigations they have done on you and I maybe talking way out of line so please forgive me but to read about all the symptoms you are having now and not say something just doesn't sit well with my profession.
I so hope that something can be found that can be treated and give you your life back to some degree because the way that you are expected to be living at the moment seems so unfair.
Thinking of you
Tayla

Hey Tayla

The RSD sucks doesn't it!? It is so infuriating! I was worried about SCI's as well - but my "amazing" mother - who specialised in orthopaedics in the army, just got an army nurse to check I was ok (HAHAHA - can you move you feet? no I haven't been able to move them in 5 years, Oh. Ok. You're fine then).

Because of the dystonia everyone just imagines it's that. I know I should go and get it sorted but I'm frustrated with it. I don't know if it's some form of SCI or whether it's just RSD as the symptoms are similar to RSD - just worse!!!

Agh!!! Well, I see my neuro in September so I will probaly go and see him if nothing better comes up.... fingers crossed I will improve because this is driving me nuts and the migraines are pretty horrendous as well! oh well!!!

Much love and jump in any time! thanks so much

Love

Frogga xxxxxxx

Frogga,

AWWWW hon, I wish there was something I could do. If I was still in Germany I would hop a flight and pester you some. You should see your doc about it, if you haven't yet. You know...sometimes, as a mom, you get angry because you can't fix your kids. I'm sure she is also feeling guilty. (It's what moms do best lol). It's hard for us to discover that we can't cure all the ills with just a kiss and an ice cream. Just remember, we are your family, friends, and we have the best and biggest ears made just for listening.
Hugs and love
Mary