What things do you do now
 

that you did before your RSDS? When Inhishands asked about hobbies it brought up what I was wanting to ask about.

What things do you do now that you did before RSDS?

Do you go to Church?

Do you take walks with your mate?

Do you go hiking with your mate or just by yourself?

Do you take rides to enjoy the scenery?

Do you go on picnics?

Do you go window shopping?

Do you go grocery shopping?

Do you spend the day with your kids or grandkids doing things?

Do you go to peoples houses for any length of time such as parties or get togethers?

Do you take trips to other states?

Do you go hunting or fishing?

Do you go camping?

Do you play games with your kids or grandkids such as throwing the ball or racing or hide n seek?

Do you go on picnics?

Do you hold down a job, full or part time?

Do you go to school?

Do you sat and read a whole book without falling asleep or giving up because you can't keep your mind on it?

Do you write letters that need to be written?

Do you pay bills?

Do you deal with money problems over the phone yourself?

Do you deal with bill collectors with no stress?

Do you deal with problems of any type with no stress?

Do you ride bikes?

Do you ride horses?

Do you clean your own house or have the energy or getup and go to do it?

Do you do your own laundry?

Do you work in your yard?

Do you spend time with your mate and are you able to enjoy it and concentrate on it?

Can you be intimate with your mate? This is personal but it is just one of the normal things in life that I found hard to do due to my health?

Do you drive yourself to the Dr?

Do you drive yourself anywhere you go?

Do you go to nightclubs or dances?

Do you have nights out with your mates?



I really don't expect any of you to answer all of these questions. These are just some of the things I am really interested in having some input on.

As I told you before in March I am having a VNS put in due to depression and I am so hoping that it will open the door for me to do some of the things I did before I got RSD and TOS.

I was just talking to my PCP and he uses the word unique when he describes me. I always say I'm abnormal, he hates for me to say that, but I feel that way. My Neurologist describes me as a walking miracle, I just think I'm a lost cause.

I just wanted to know how many of you are living somewhat of a normal life in the ways I mentioned above or ever thought about it. I might depress you by getting you to think about it but at least it will get you guys to strain your brains. Just kidding.

It just really bothers me that I am the way I am. Bill took care of me for the last 19 years but after the RSD and TOS I was so much worse and my depression was so much worse.

I just wanted to know if any of you feel the same way I do about things you can't do that you use to do.

Thanks to all of you for the love and support I get here. All of you help keep me going. If I'm down I can come here and read and talk to you. We need that support.

Ada

Good topic Ada
 

Ok. Well, that is a long list with very few that apply to me.

I won't say the things I can't do. That is a long list.
But almost all those things on the list are things I can't do...llike fix a meal or ADL's or wash hair.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Things I can do now (without help) that I did before:

* I can wash my face with disposable baby washcloths, soak my arms/feet
in warm water & Epsom salts.
* walk around my house.
* occasionally read the same page of a book three times or more.
* watch TV for short periods.
* Mostly can deal with problems w/o too much stress.
* Go to church with my husband.
* We can go out to eat a few times/year, but mostly take out.
* Talk on phone wearing a headset
* Computer using Dragon Naturally Speaking
* Sleep :wink:

If I think of more as I go through my day tomorrow, I'll add on ...Thanks! Hope

Hi Hope,
 

Thanks for the reply.

I thought about this after I posted last night and I realized there are several out there that may not even be able to bathe or do their hair. Sorry for leaving that out.

Ada

My problem is that the things that cause the most trouble don't usually cause trouble until later. It makes me afraid to try to do much of anything.

Before I was in robust good health except for a trick back and awful sinuses.

Please understand that most of these things I do not due, strickly because they are not comfortable for me. Many of these I am assisted with help.

Do you take walks. With DD only in good warm weather

Do you take rides. When I feel up to it, the car is not always comfortable, ad gas is expensive in NY

Do you go on picnics. Maybe in the spring

Do you go grocery shopping, usually once a week on a good day, do not like it though and I am always assisted because I cannot push the cart and lift many items.

Do you spend the day with your kids. Yes but adapted to how I can now, vrs before I was sick.

Get togethers? Only with people who understand my conditions and where it would be acceptable to lay down (Family mostly).

Do you go camping? Yes but my DH has to totally handle packing, setup, teardown & cooking and all that fun stuff that everyone hates about going. It pains me that there is little I can do to help.

Do you play games with your kids. Only board or cards as I feel I can

Do you hold down a job. I am trying to get back to work, but now I am not sure I will ever be able to. I am 100% disabled at this point.

Do you write letters that need to be written? No because writing is very painful and basically unreadable. Thank goodness for DD or would not have lists.

Do you pay bills? Yes, via internet

Do you deal with money problems over the phone yourself? Yes, but If it is too complicated, I may defer to DH.

Do you deal with problems of any type with no stress? Nope, problems are stress and stress is pain.

Do you clean your own house or have the energy or getup and go to do it? I do what I can and my family handles the rest.

Do you do your own laundry? As I can sometimes assisted sometimes not, depends on pain and resting inbetween.

All things like going out and being close are uncommfortable for me. I do not like anyone near my arms at all. Touching is usually a deffinate no no. Thank goodness my family understands all of this and are as compassionate as possible about it.

Just my 2 cents, Rain :hug:

I am living deprived
 

Gee that big list is my use toos. The only things I do now is work on peoples computers, and very slow at that. Also create websites, research online businesses, a post to you all.

hi ada......
 

i have several 'used too's' but am usually focusing on what i 'can' do..........like spending time with emily.....(and there is a new one on the way...yipeeee )

i grew up on skates........... ice and roller.....loved to skate.........now i no longer can, but i enjoy watching emily ice skate.........skiing was another one i loved....water,and snow...but those are totally out of the question.............

i consider myself very fortunate, as my rsd pain is tolerable...i do however, watch what i do, as i have more pain from the fibro........

however, frank is really going to have a long list of used too's.......

with three homes to keep up, he used to do it 'all' repairs, painting, anything that needed to be done....(he is a good handy man...lol ) but with this new injury, his rsd have really taken hold of him.......he used to be able to continue working as a cop, but not now...............
he used to play football, softball, bowl, hunt, fish, ski, if it was a sport, he did it......... however, now he sits at home watching tv, with a pillow propped under his arm, and suffers immensley.........
his career will be gone, as they already told him he could no longer be a cop.....
i try to encourage him to stay positive, and dwell on what he CAN do, but that list is limited.......he is a strong guy, so i know he will find something that he will be able to do....i just hope that they can get him SOME relief from this pain.............his meds are doing absolutely NOTHING........

so there ya have it in a nut shell....lafff

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

Thanks for the replies.
 

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!! :hug:

Can't do much anymore - life is not the same
 

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

Hi all,
 

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