Hey Ada,

interesting thread....

Without help I can
use my computer (as long as the carer has decided to set it up and put my headset on)
use my electric wheelchair

erm I think that's it...... (I am a quad - so I suppose being able to do those 2 are good things)

Things I can do with help from mates/ carers:
basic stuff like dress, wash, transfer, go to the bathroom, eat (sometimes) etc
Go out for walks
Go out to dinner/ clubs/ cinema/ bars
Shopping - sometimes - too scared of being touched, and HATE being looked at like I'm from outer space and then talking to the people over my head!!!!
Go to lectures, write essays, read books, write stories,
Go to concerts and plays
Help cook (well... tell people what to cook is a better expression i suppose)

Basically on my own I can't do anything - but with great mates and carers there is pretty much nothing I can't do.. (well, apart from use my body!) oh well.

On the subject of hobbies - I love reading (but can't hold the EVIL book) and hanging with my friends - it's brill, if I need to lie down or just need to stay still or something they are fine and either come and sit on my bed and talk or just hang out in my room... and my boys also come and give me a hand... (durning the "you will go on bed rest" times they used to pick me up and carry me to someone else's bed so I could look at a different ceiling! LOL...

Rxxxxxxxxxxxxxx

The reason I wanted to do this thread is because in March I am getting a VNS for depression. I am hoping it helps with some of the things I can't do. I often wondered which things go with the illnesses we have and which go with the depression.

I have trouble just leaving the house. I only leave it for dr. appts. and otherwise can't go to the store or even for walks at times. I also deal with the suicdial tendencies really bad. I had them all of my life but they did get worse after I got sick.

I'm scared about this but I'm excited too. I cried for 2 days after I found out that my insurance had ok'd it. I just couldn't get past the fact that Bill wasn't here to enjoy it with me if it works.

It's so hard to tell what symptoms and problems go with what. I do see most all of you are the same as I with the normalcy in life. Like Claudia, I enjoy my Grandson's but they come here to me. They will be here today and stay until Tuesday. Thank God they still haven't outgrown me. LOL Devin had a basketball game today and I was going to go but they called and moved it from 12 to 10 and I wasn't ready to go. Secretly I was glad, I was having trouble making myself go out the door to go anyway. Do any of you deal with this problem?

I am thankful for what I do have in my life but I really get frustrated with not being able to do some things for myself. Susan now picks up my meds and groceries where Bill use to do it.

Guys just say some prayers for me that this VNS will help me at least with some of my issues.

I'm sorry that all of you go through this too. I know what my life is like so I actually know what most of you are going through. Some worse then others.

Thanks,
Ada

Things I still do that I did before RSD...

I still walk my dog

make my bed

walk (not as much... rather, not nearly as much, but still...)

use the computer (probably more... since now I research RSD and talk to others with RSD)

use my hands/ arms to do simple everyday things- eat, wash a few dishes, pick up things around the house, etc. My biggest everyday thing that I am able to do is move the laundry)

sculpt with sculpey clay (this is something maybe someone else with RSD might like to do)

run over to the neighbor's house for 20 minutes (not really run! I'm far from that)

go to church some Sundays

dress/ shower myself

read (a LOT less than I used to)



As you all know, everything is a chore... everything is hard. The things I listed here are so painful that I usually cry trying to accomplish them. But, I can still do them.

Ada, please know you are in my thoughts and prayers! I really hope that the VNS works for you!!

Before RSD - I could do almost anything I wanted I had some limitations because I already had FM. However, it was mostly in my face, upper body, Trigger Pt. inj. were a God send to put it into remission often. . However, since the epidural for mergalgia paresthetic I am extremely limited. Also, since the IV push in my rt. hand I am even worse.
I can no longer walk the dog, walk even a block. I just walk around the house. I can go to the store for 20-30 min. at times but often pay the price later. I can drive sometimes - but the FM is now in my knees and ankels and it is painful to drive at times.
I am pretty much housebound -thus I am on the computer a lot. Yet - I suffer for that as my hand, wrist and entire arm as well as my upper back hurt after being on the computer.
Life is not the same and I am very depressed. Used to be running everywhere, traveling abroad, etc. by myself. Now I have lost my independence and am in chronic pain all the time with no meds to help me..
By the way - I listed some ideas for meds I found on this site and others on the medications forum. Would you mind checking those out to see if anyone has used any of them and gotten any help.
Best wishes
Sydney

Thanks for the replies. I am amazed at how an illness can take away a persons personal life like the RSD does. I know other people have other medical problems but they still seem to be able to get out and go and do things that we can't seem to do. We have no sembelence of normal life at all.

I just wonder if any of us will ever get some of the normalcy back.

I'm wondering about the ones in remission. I know there are some on here. Have any of you got back to doing what should be normal everyday things.

Ada

Sometimes normality is realising and accepting that there are new boundaries that weren't there before the RSD and the pain.

I wouldn't say I'm jumping for joy about the amount of things I have lost.. but, I have learnt that thre are other ways to try and compensate for the RSD and pain. YES I still think this is all unfair, YES I absoloutly hate it. But being 21 I am likely to have years of pain and disability ahead of me, and I REFUSE to spend my whole life stuck in the house in bed.

Changing to try and accept that just because I WANT (desperately) to be normal it doesn't mean that I will become normal - in fact the frustration and stress usually end up making me worse... I am incredibly lucky to have a very supportive group of friends who have accepted me and who understand my limitiations.. It's bizzare, but through them understanding, it means that I can do so much more - as they are all there to help me if I need it.

I can no longer do the activities I loved doing, but new things have opened up. I now write articles, do small bits of media stuff and help to teach about disability. I am a full time student and am lucky to have brilliant mates - who don't mind hanging in my room with me in bed if I can't sit up for a while.

I am luckier than a lot of you. I have 24 hour care and support as well as brilliant friends and some cool technology. This means that more of my energy can go on studying and doing stuff instead of on concentrating on trying to get out of bed, dress myself or worry about cleaning the house or going shopping. Also, in some ways because my level of disability is very obvious it means I rarely have to deal with other people saying such useful things as "but it's ONLY pain etc".

That's just my thoughts on normality and RSD..

Love

Frxxxx