Fed up...
 

Hey all...

Well, I'm fed up!

Ok.. for newbies. I have full body RSD, am 21, at uni and am in an electric wheelchair. I had an accident 3 months ago where I fell from my wheelchair and landed on my head, causing severe spine problems and making me lose all use in my arms and hands. I'd started to get a tiny bit of use and movement back in my right arm but it's gone now and it's just died. It's horrible. My jaw and face are so tight I can barely even suck/ eat yoghurt. The migraines are continuous, the visual problems are making me almost unable to see and with double/ triple vision. The dystonia is now causing my whole body to shake and my feet are curling into themselves more and more (will get more pics, but they are now balling themselves in) and my hips are setting. We discovered I now have no spinal movement and it's so infuriating.

Everything is burning so much, my blood pressure is through the floor etc we are trying to keep me out of bed so I don't go back to bedbounf but, as Ness knows, it is very tough!

To top it all my mother just doesn't get it, she tries so hard but she just keeps thinking I can think myself better or something, which is infuriating!! It's not my fault I got ill... but she doesn't get it.

AgGGHHH!!!!

So mums bitching at me and I have no use from my head down and now my eyes, brain and jaw have given up. This is a nightmare!! AGH!!

Love ya

Froggsy xxxxxxxxxxxxxxxxxxx

Sending you lots of love and hugs, my dear! xxxxxxxx

I know it- all too well! Grr... and absolutely nothing you can do about it! :( I hate that people think I can just get better out of nowhere too...

Love ya!! :hug: :hug: :hug:

What can be said ?? "sorry".... on top of all you've been dealt, now head injury w/ the terrible symptoms of severe headaches, visuals, etc. and more to your central nervous system. It is Horrible.

I 've been (trying) to deal w/ affects of TBI, that exacerbated Pain disorders, Neuro stuff & more.... too much to get into. ( you don't need to hear my problems now )

My heart & prayers go out to you. Hope someone can help you w/ all .... and that well meaning others, family, your mom , etc. don't continue to add to your problems.


Blessings...

have you seen dr/neruo for this?? traumatic head/brain injury are very difficult but medical intervention may help w/ some symptoms --like headaches. The visual problems may require a Neuro specialist , as well as other problems manfesting.

If there's anything I can do, please let me know. There are somethings that have helped my TBi & the resulting post concussive problems.....
some things get better w/ time, but often not before something else gets worse.. it can be very MADening . I went thru lots of anger, & much that others couldn't understand ( I didn't either) but I am getting better...slowly...


all you're going thru is a nitemare... I pray you'll soon find some resolution & relief....you so Deserve!!

*

Hi Frogga,
 

I'm sorry to hear you are having such bad days. It seems like when it rains, it pours.

I hope as Pono says you are seeing your Drs. Maybe they will find something that will help you with what you are going through.

I haven't delt with the attitude problems for a long time. My Dr. had my daughter to come in with me and he told her what shape I was in and how to help me through it. That was about 4 years ago and since then she has become my caregiver. She does good with helping me.

I think it's funny that people can see others in wheelchairs and on oxygen and bedridden but don't think that their friends or family could be one of those sick people.

Feel better soon. You do know you have that trip to think about.

Ada

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