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

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.:hug: 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:hug:

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

Dear Frogga
 

Your fed up--OMG---I don't think fed up is strong enough, but all day I have tried to think how I would feel and there are not words:eek: So I lit a candle for you and prayers are being sent to your whole family, may peace and healing surround you all!!!:grouphug: Carose

Dear Frogga -

Just cannot believe how you keep up your humor and all around wits with everything you've been through of late. You continue to amaze.

I don't suppse it's too much to ask whether anyone at the NHS has been able to order an MRI of your cervical spine, or will that have to wait until you seen the neurologist in September?

You're in all our thoughts, but you knew that already.

much love,
Mike

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

Hi Frogga,
 

If my Mom were living today she would be like yours. Mom would be waiting on me hand and foot and it would drive her nuts that I wasn't getting well.

When I stayed with her in 94 when she passed away, I had tumors all in me and at the time we didn't know what was going on. I was so sick, I was trying to take care of her and she would laugh and say,"you're worse off then I am." She would try to cook for me at times and it was like the blind leading the blind. We didn't eat much. Bill was busy building our place so he couldn't take care of us in the day time. Mom always referred to the 10 of us as her babies, even after we were grown. We would go to town with them on Saturdays and she would introduce us as her babies. Well us being in our teens that just didn't sat well. Mom came up here to see me when I was to sick to go see her. It was 1200 miles between us. They never stop worrying about us. Being a Mom now, I know what she went through.

She's really a strong woman to take care of you and your Grandparents like she has. You must be very proud of her.

When you say you're frustrated, I know what you mean there when it comes to sorting out what is going on. I have been there so many times. Now I'm going through it again. I get better for awhile then I start dealing with symptoms and trying to figure out what goes to what. Now with the vomiting, I see my Dr. this evening and talk to him about what's next. I'm sure there will be some test to go through. It is very frustrating to know you have several things going on at once. But I know that when you start feeling better you will be able to get it done. You are very strong willed an that will get you through this rough patch.

I hope you start feeling better soon.

Ada

Oh Sweetie,
I wish I could do something for you. I'm a mom. We moms always want everything to turn out right for our children. We just never seem to give up hope on them.
I sooo much want you to get better! Please keep up your good spirits (which I love).
You are in my thoughts and prayers,
Linmarie
:hug:

How'd the bath go?? It is nice to get one after so many bed baths... isn't it?! Woo hoo!

I will email you when I can... nice to talk with you! You are so dear to me... you already knew that, but I wanted to remind you how special you are!! Thanks for taking me under your wing.

You are doing brilliant... you really are! You help me learn to manage to get through all the same things.

Keep on keepin' on! You'll pull through... try not to go nuts with the migraines, pain and dystonia!

Love you tons, Sweetie! xxxxxxxxx :hug: :hug:

Hi. I'm sorry I'm late to respond. Thanks I'm hanging in there and trying to stay in the moment which is not my strong point. Anyhow as for the mom issue I know it may not change things but still using your voice and saying how you feel. Its not good to keep it bottled. I'm in therapy for myself and have you thought about it? I'm now looking into biofeedback which I did when at the pain program at Cleveland clinic which was so helpful for me. I have such anxiety and found it really helped me calm down. As for friends I can relate. All my friends are running around and I feel left out and behind. They don't understand the mental toll this takes too. I think people forget what even a simple phone call means. Is there something you can do for you to lift your spirtis? I know it doesn't take away from what your going through but any mental lift can make things a little better. Hang in there and if you want an email buddy I'm here.

Hey Carose, you get through it because you have to get through it. There are times when things are really tough and mentally they suck, like at the moment! which is just so frustrating. But I will get through it. I just wish things could be different. I am still so jealous of my normal friends being able to do normal things.

Hope you are doing better

Love ya

froggsy xxxxxxxxxxxxxx

Hey Micheal,

Thanks, you are such a dear!

Come ON!! The NHS won't do an MRI unless I'm in hospital otherwise it's a 2 year wait, even after my grandmother developed lung cancer it was still, STILL a 3 month wait after developing bloody spinal cord compression!! IN HOSPITAL! I have to wait to see this neuro before I can have one... stupid NHS! it drives me nuts...

Are you ok?

Thanks so much. I am just so frustrated and no one will listen to me.

Love

Frogga xxxxx

Thanks Desi, you are great! I do think of this as such a part of my family - one day I hope to meet all or as many of you as possible! It would rock. I just wish things were different. I just want my life to become normal and for things to change. I just want things to go back to how they were - I keep thinking geez I complained when I couldn't walk but had a smll amount of arm movement, but to lose it all... it's just tough! but I suppose life has to go on, I just wish it was different. I especially wish my mum and sisters attitudes would change.

Love ya

Froggsy xxxxxx

Hey Rogue,

How are you keeping? hope you are doing ok? You've been abit quiet?

I think that's what gets me. Mentally I can cope with alot but I can't handle the constant put downs from mum and Charlotte - It infuriates me that if it was the other way round then, being honest, I might resent them a bit but I would understood they need help. I have needed feeding for 2 years now and Char has fed me 3 times, she has stormed off and left me naked if I say anything like that she is hurting me when dressing me, I cried when my did my legs this morning and she stormed off half way through then did them 3 times as hard and is not talking to me because I then spent the rest of the day incandesant with pain and rage. She is also not talking to me over the catheter issue and the wheelchair issue (for another post). AGH! I wish I could make them understand that this is not my choice of life - and they don't live it so they can't understand. I am tempted to move out for the rest of summer. It is so hard living with RSD anyway but they just don't see that there attitude doesn't help. I know mum can't handle me getting worse, but still!!

Love

Frogga xxxxxx

Hey Mary,

How are you doing? If you ever hop over to Germany come and say hi! I think that is one of the biggest problems, mum wants me fixed and blames herself I can't be- she always feels that if she had made me keep walking, keep using crutches, somehow keep feeding myself, worked harder, done more, done more physio, tried more drugs then I would be normal and this would be behind us. But. It's not. Which sucks but is how it is. But she can't accept it. And when she can't the rest of life just... I don't know. I just wish she could understand this. GRRRRR

Love ya

Froggsy

Hey Ada, I don't think I explained very well. Your mum sounds awesome though! Basically my mother is very strict and she does not believe in disability despite everything that has happened. When granny had her spine injury and was bed bound for years mum would carry her downstairs (at the age of 15 or 16), skip school, lay her on a blanket in the garden and then do the gardening under her directions, or build a wall, or repaint the house or do whatever, all with granny lying on a nearby surface somewhere (including at times the kitchen surface, table etc). She doesn't believe in waiting on people and believes if there is anything I can do myself then I should do it. As a quadraplegic there are many things she HAS to do for me but whenever I have been well enough to do stuff she makes me do it, regardless of whether it is faster and less painful for her to do it. We are talking about a woman who doesn't believe in deformities, that will reset my shoulders and knees and hips when they dislocate from the spasms, that nearlly broke my neck trying to break the spasm, that is now planning on strapping me to a spinal board to get me PROPERLY flat. A woman who believed that I could walk even though I was strapped into a frame, held up by her and had someone else kicking my legs forward.

Mum is great and without her I am certain I would be a lot worse, she has done things that drs would never consider doing - like resetting some of my joints, she kept me off an NG tube when everyone said I needed one etc, BUT she is strict as hell about the RSD and NEVER EVER GIVING IN TO ANYTHING.

I am frustrated because all I can move is my eyes.

Worse. When does it calm down? I haven't fed myself in 2 years, I haven't moved my arms in 3 months. I haven't moved my legs in years. When does it calm down so I can get it sorted out?

Love

Frogga xxxxx

Hey LinMarie

How are you? (Love your name by the way). Thanks... I think I am starting to understand that mothers are all built similarly, they all want the best for their kids just they all have different ways of achieving it... Thankyou so much for your love and prayers!!!

Love ya

Froggsy xxxxxx

Hey Ness

I'm so glad your bp etc is up and you are doing better - keep going with the methadone.

I am just so frustrated at the moment and just want my families attitude to change - I am glad it's there, but it is so tough to live in the army 24/7. (Even better both my sister and my mother are partially deaf. Makes life so much easier).

Love ya and will PM you later

Froggsy xxxxxxxx

PS Bath was good..!!!

((((((((((((((((((((((((((((Froggsy))))))))))))))) ))))))))))))))))))))))))))))))))))))))


Just take care of yourself honey:)
You can't save, heal,help, give therapy to , everyone else .You have enough on your plate.
Eventually everyone will find their own way ..I am sure we all have some of these issues with our family members to some degree . But we cannot save the world .We have to take care of ourselves first and somehow when we do that really well - the others seem to fall in line a lot better.
It won't happen overnight but it will happen - now you just be good to YOU :)
That is the most important thing to do right now :)

Peace
GnP

Hey Daniella,

Thanks!!! How are you my dear? Bio is pretty useful isn't it? I'm glad it helped with your anxiety. I am currently planning my holiday which is always cheering it's just the symptoms are kind of bad at the moment and are kind of ruining trying to anything at all. It's hard because I have to have things done like having my legs seperated night time and morning time because of pressure ulcers (my legs twist around each other and I get large pressure ulcers) and all the touching sends me wild for the day, especially if it is done too hard! which it generally is... grrrr... oh well. Was your mum hard at first? many mine is just a SLOW learning....

Love ya

Froggsy xxxxxxxxx

Hey GnP!!

How are you babes?? The problem is because I am reliant for almost everything I need my mum and everyone to be positive because otherwise I can't do anything - if they are frustrated and cross then I am stuck in bed. If they are frustrated and cross then I don't go to the toilet. If they are angry and hurt me when doing the physio or stretches then I am in agony. I am so dependent on people that if they don't do it right then I am screwed!! and unfortunatly it relies on them being willing and in a frame set where they can help. If that makes sense

Love ya

Froggsy xxxxxxx

Hi Frogga,
What happens over there if you presented to an emergency room?
If you presented here with all your symptoms you would have an MRI within hours.:(
I just don't understand how they can ignore such significant neurological pathology and not seek to find the reason. :confused:
Surely it would be cheaper for them to find a cause, treat it if possible than support you as they have to as a quad.
I am so sorry for your predicament--- as a nurse it makes me so angry when I see such shocking treatment.
Thinking of you
Tayla:hug:

Hi Frogga,
 

I am so sorry I missunderstood you. It sounds like you are having a very rough time with your health and your family.

I feel like Tayla does. I don't understand how they hospital and Drs. can just not get some test done on you and try to get you doing better. I don't understand how they can just ignore the shape you are in and leave you like that.

As far as your Mum, what I would hope that she would understand is that you need her help more then anything right now but there might come a time when you can do a lot for yourself once you start getting better. I pray you do. I wish we could look into the future and see you at how you are going to be a few years down the road. I have faith that you will see some better days.

Ada

I'm really so sorry. How do you think your mom and family could help you more? Could you try to ask them to do that for you? I mean in physical and mental support? I think for me and sometimes it doesn't work but telling people my needs and not feeling bad for that. I often fear hurting people's feelings but then I get hurt in the long run. It doesn't mean your not appreciative or love you family because you say what is nothering you. You have so much going on and I'm sure if you were in there shoes you would want to help in the best way you could. I know things with health care are different out of the us. I used to suffer from an eating disorder and the girls I knew out of states had a real hard time finding care and in a timely matter. This may not be possible but is there a way you can send your health records to places in US that may be able to help you more? Ok I'm so clueless but what holiday is coming up for you? Well I'm sending thoughts your way.

Hi Tayla

I guess the thing is that over the years we have got the point where every time I end up in ER I end up in hospital for months and get worse and thus I refuse to be admitted. For me to get an outpatient scan takes FOREVER! I have rung my neuro and asked him to hurry up the appointment because of my shoulder (the dislocation means that my shoulder is now being pulled on to my ribcage - I have EDS and so dislocations are "normal" for me, but it's still abit of a nightmare). However you'd think it would be cheaper and easier to do something wouldn't you? but no - Social services bill isn't paid for by health so why worry! (geez and people wonder why I'm cynical!)

Hope you are ok

love

Frogga xxxxxxxx

Hi Ada,

oh well, mum will pull herself together, she just hates seeing me in this shape and she believes that if she bullies enough then I will be able to get better. She also doesn't like having the carers living in the house. I was supposed to have 2 carers but she agreed to be the second carer so that we only needed one, however she now doesn't want any carers - yet doesn't want to do the caring! It drives me nuts... oh well

love

frogga xxxx

Hey Daniella

How are you? Basically I'm a quadraplegic.

I need turning, dressing, hoisting, washing, hoisting ontot the toilet, my teeth brushed, my face washed, my hair brushed, my physio and stretches done, feeding, transfers to wheelchair from bed, transfers to the car, someone to give me my medication, someone to accompany when I go out, someone to put my splints on when needed etc. My carers do some of that, they dress me, do some of the stretches, some of the splints, feed me, do hair/ teeth but they need a hand with some of the hoisting and physio but mum doesn't want to do it because she truly believes that if I try hard enough I can do it. Yeh, right, now. That would be nice! LOL. Mentally I'm ok with it - yeh, it's definetly not easy, but I can manage somehow.

Holiday - Becksy (a mate and carer) and I are going away on holiday together, we are going inter railing around europe, the new plan is that we go from the UK to holland to berlin, to vienna to slovenia and then fly back over about 10 days. Sounds good huh? It's going to be hard for Becksy but I am probaly going to be catheterised so we won't have to bother with bathroom transfers and we just won't bother with physio other than pressure relief and will just cut back the stuff we are supposed to do to the minimum also I am lucky that she can lift me easily so we aren't bothering with hoists.

Love ya

Froggsy xxxxxxxxx

Great big hug and sympathetic howl....