[jane]

Right this is the first bash at writing down how I feel.

I knew that the surgery could make me worse off I had it explained to me in graphic detail, and I suppose I just blindly hoped that wouldn’t happen, or didn’t completely consider the ramifications.

Waking up after the surgery only being able to move 1 arm was bloody scary. I hated being in hospital, hated having bed baths, not being able to use my body and not being able to do things for myself. If I hadn’t been able to phone people or people visited then I don’t know what I would have done. I just wanted to be home, hoping that things would return to normal then, or I would just cope – How wrong I was!

I came home and then realised what I can’t do – simple things like making a cup of tea were totally out the question. Having to ask for everything doing was horrible and I don’t thing people realised how I hated it. Then my daughter started having problems at school and I tried to stop asking her to do stuff, which then meant I didn’t get basic things done. Friends suggested I used microwave meals, but I hate them and would rather go hungry so I did.

Six months on – some movement is there, I am more confident that my left foot is touching ground even though I can’t feel it. But that is it as regards recovery, I still don’t have feeling in my right side, I still can’t tell if I am weeing! I can tell my bladder is full but can’t tell I am emptying it. Bowls are crap – to pardon the pun. I can’t even tell if I am farting. Sensation in the sexual department isn’t great but there is some. But that isn’t what people see - they see me walking better; hobbling without crutches so assume I am a load better I AM NOT.

Then of course there is people’s attitudes, especially when I am in the wheelchair – they don’t speak to you. It is horrible.

And, I feel like I am not pulling my weight at work, that other people think I aren’t doing things. That I am not helping myself. That basically I am a failure, a waste of space.

I hate this. But I have to pretend to everyone that I am coping, am happy and put on the nice smiley Jane face. Again I hate it. Occasionally I try to tell people how I feel but I can tell they don’t really want to know. I know I need some kind of counselling / psychotherapy but I don’t trust anyone and finding the right person just seems too hard work.

I am so tired.

I know it is early days and I have come a long way but it isn’t what I wanted, I wanted 7 days in hospital and to come out ok (better in fact) not worse.

I suppose I am selfish.

Outside I smile, inside I scream!

[Coach]

Smiling outside some is a good idea but your wanting to scream isn't selfish. You're legitimately overwhelmed and there's always the possibility that you're clinically depressed. I assume you don't want to do antidepressants, especially since you obviously have some valid reasons to be depressed, but it might be worth considering; if you use them sensibly you can avoid becoming habituated. A therapist is a great idea. Having someone who's paid to listen to your unhappinesses avoids your over-dumping on friends and family. And there's us here on the board, who thrive on helping people function effectively and get back to the point where they're doing for others as much as is being done for them. We almost all need too much help for comfort. Finding a responsive therapist is of course difficult, but another thing using one does, even if you have a few false starts, is give you a better sense that you have options. Your still unhappy, but you're trying something new to get it together, you're DOING something.

There may be cattiness and cruelty at work, but there's also almost bound to be admiration that you're functioning in the workplace at all. Some people will not bother to imagine being in your place, but some will, and if you can resist snapping YOU HAVE NO IDEA there's hope--shucks, there's hope even if you do snap now and then.

Having the operation make you worse must have been a brutal experience. And hating microwaves doesn't help. I've cooked myself two grilled cheese on the stove in the past 42+ years--one was better than the other, both recent--but I warm cans of soup in the microwave like a champ. I hope today improves and tomorrow's better.

[marzie]

Every thought and emotion you are having I had and still do at times. After being away from home for almost a month (2 wks in hospital and 2 wks in rehab), I thought (hoped) that going home would make everything better. I was not ready for how overwhelming and daunting it would be to be back in familiar surroundings as a completely different person physically. I was a stranger in my own life. I was still in a neck brace, afo, and wheelchair. Friends and neighbors had to come around and make meals for me. My son was just starting high school and had to take on responsibilities that made me feel so guilty and hate myself sometimes. It took me a year to finally accept that I needed to talk to a professional and I did go to counseling for almost a year. It did help. Intense physical therapy also helped.
I know what you mean about peoples reactions to the wheelchair, they look at you as though you have something contagious. Either that or you just become invisible. But that is their problem, not yours.
Days when I found myself standing on the edge of that dark abyss, I would start writing letters to myself, every thought and feeling I was having. Sometimes I would write to my injury, as though I were writing to someone I was really angry at. May sound silly, but it did help get me through some of those dark moments.
God knows, you have every right and reason to feel like you do, but it's hard work to talk to yourself every second of every day, trying to get up the energy to plod along. You become emotionally exhausted.
I hope some of this will help you. If nothing else, please know you are not alone, you have us.

[Joed]

Those are both great posts, guys. Well said, well said.

There is a sense of not feeling familiar in your own skin after returning home from a SCI. An alienation from your own self...and that can be very unsettling. And it seems to really come to the forefront upon returning home to familiar surroundings. Daunting is a good word, marzie.

2-1/2 yrs. post-injury, I can say that I don't have those intense feelings much anymore. I'll have days when it rears up, but for the most part, I fuddle along okay.

Jane....you've expressed yourself quite honestly and everything you've said is valid. I don't know much, but I can say with certainty that it won't always be this way. You are still very early in your recovery, and life has a way of interjecting joy whether we're looking for it or not.

You're still in there. But you're injured, and it will take time for the essence of who you are to find new niches to express itself. I don't want to minimize any of your pain, physical or otherwise, because they are very real taskmasters to be dealt with. I just want to give you some hope that things will not always be like they are now. This is the only true thing I know.

~Prayers and Blessings~

[jane]

Hi thanks for your replies.

Coach, thank you for saying that obviously have some valid reasons to be depressed - i sometimes think because i hacve a history of depression my gp thnks tthat taking some tablets will solve the problem - which i don't think it will.

my physio is finding out if i can see the physcology service at the hospital so that might help .

I just sometimes find it hard. like today - off to church to play my flute (a nice new one i bought yesterday but i can't play as well as i used to) then i have 2 more services this afternoon and evening which i will enjoy but will get very tired. and i want to have the energy i used to - and doing the happy smiley bit.



thanks for your replies

This post has been edited by jane: 12 February 2006 - 01:28 PM