Hello Everyone,

I hit my two year mark, and I'm having some trouble. The permanent damage still isn't going away. The nerve.

After two years, my "symptoms" seem to be winning out. Nothing has gotten better in a while, and I know I'm lucky I can do all that I can etc., but I am struggling with the permanence of this. I read that someone mentioned 5 years for "recovery" from the whole ordeal. That actually seems reasonable.

I'm struggling with this...day in and day out. A lot of that likely has to do with having a busy life with work and two young kids, and things will settle out in a few months with work. But, does anyone have any advice on simply accepting the permanence and making the best of it? I'm trying, but I'm struggling.

I generally look like an able bodied person. But every once in a while I'll just freaking fall over! I actually nearly bit the dust at a packed Flyers/Capitols hockey game while going to my seat (did not spill the beer). Or my crazy legs will spasm under a table in a meeting, etc. People just don't know, so it feels odd.

This actually is kind of funny to write. I fell in a park today in front of a group of people. It was a totally flat path...it looked like a sniper got me!

I don't know. I'm just all out of sorts. Been away from my family too much and my legs have decided to become the consistency of linguini. I just don't really have anyone that really understands this. Thanks for having this site. Generally panning for words on encouragement

Yours truly.

Hey Lucky,

I have a lot of respect for those who can walk, but who are on the limit. Obviously nobody knows what they are going through, and the pressure is really on to function normally, which is quite impossible.

In a way it is much easier to be complete, in the chair, as I am. In that case people really know they are dealing with a gimp and are ready to cut some slack.

Good luck, buddy. Be true to yourself. And remember that the accident could have been the end of you. What you have now is a special extension. Make the most of it. But don't be too hard on yourself.

You'll be allright in the end.

Best Regards,

Gordon

I agree with gordonr. I suppose you get people who don't know any better figguring you're drunk too, huh

Thanks to both. That is a good way to look at things. Yeah, it's just a lonely feeling. I understand why people don't understand. But I guess if I can come to an acceptance, which I think I am a bit, I won't really care if they understand. I do need to get back to rehabbing. I feel like complete sh#t right now. Freaking thing has to be like a pendulum, doesn't it?! Thanks again. I'll try to pick it up. I've been being a "dumb SCI".

Same happened to me at a Piston's game.

I'm just past my two-year mark as well and this is the first time I've had to job hunt in a chair. I know the economy is bad, but still...I've had several interviews but nothing comes of them. My last one was through an agency who told me that the client didn't want me but wanted them to send more candidates. I thought the interview went well, and I know my experience is adequate, etc. Anyway, that's what I'm struggling with.

As for being out and about, I use my chair most of the time. If I'm just walking a short distance I use my cane, but anything like the grocery store or home improvement store I use the chair.

I guess my attitude is that I want to make the most of what I have left. If I take it easy (using my chair, etc.) I can do more. I don't think our attitudes should change just because we're more limited than before. We had limitations before our SCI, we just have to adjust to a new set of rules.

Hi CrazyLucky,
I really don't have any advice to offer, only empathy. It sounds like your situation is one where you just can't predict what's going to happen day-to-day - which can perhaps be even more frustrating than having a "worse" disability. I mean, being able to walk is fabulous, and knowing you can't walk is something that can be adapted to (she says cavalierly, being AB), but not knowing what your legs are going to do in the next ten minutes must be quite the head-trip.

My boyfriend have a running joke about being "out of sorts." Sometimes when he has bad days he may say he's not out of them completely, but he's definitely running low. I usually promise to pick up a supply on my way home from work. It's a stupid little joke but it's just one more way to get through those low spots.

Here's hoping this is just another bump in the road for you, and you get back on it walking, falling, rolling, crawling, whatever needs to be done.

Plus I'm jealous...you went to a Caps/Flyers game??? I haven't been to a decent fight-on-ice since the Skipjacks left Bawlamer (my home town - left in '87).

Good luck!

-Janet

CrazyLucky,

I don't walk really- I can only creep along with canes, so I'm not in your shoes. But years ago I had a friend with Muscular Dystrophy whose life was much like yours. On good days he might be up on a roof while I spotted for him from the ground, holding onto a safety rope with his left hand while placing AND driving a nail with the right. I never saw anyone do the things he did. On a bad day he would go to a meeting and be at the table long after everyone else had gone because his legs were locked up in spasm. No one understood, nor did he really- life was unpredictable.


Meet each day as a warrior must: You do what you are called to do, and pick up the pieces of yourself when it doesn't work. never apologize. Intend each step with courage, knowing it may or may not work. Being like others would be a pretense and a curse.

Wind to your wings.

Pat

Hey Lucky

Good work on saving the beer! The two year marker is a Standard Issue difficult time. Pretty understandable if you think about it. Up to that point, you've been so busy just learning about the changes, your new-style body's needs and failings, the emotions of it, how it affects you, how it affects others, how it affects your relationship with others, information, denial, confusion, god... where does it end...

... Two Years you kinda sorted a lot, found a rhythm worked out who's on board, and that unexpectedly leaves you with time to think about you, SCI and as you put it: permanence. And that's a BIG deal to consider. Don't even think about giving yourself a hard time for not coping better or any of that line of thought. You're normal, and the good news is that if you're normal and other people have also had the same 2 year emotions, and got through them, then you will too.

For a while, days are gonna be hard, but don't confuse that with days are always going to be hard. Your bad day today is just your bad today. And if it continues to tomorrow, so be it. But be assured that that heavy feeling will change, with patience. Just keep doing what you've got to do and let the days take care of themselves.

What I learnt, and that made ALL the difference, is understanding (myself, others, how the world & emotions work) and logic. The difference between my lowest moments (where I felt half my former self) and my highest moments (where felt twice as good as any other man) was entirely mental and down to understanding of myself: because nothing physical had changed: I was still paralysed, still doing the same work, still surrounded by the same people, etc..

I cannot understate the difference that learning breathing exercises can make. (sorry for repeating myself on here) It's not a very exciting discipline, and can be tiresome to get into it (we're only talking 10 minutes a day or so). But there are so many distractions in a day that we lose sight of what's important. Self-focus is the only time you give your mind the time it needs to work through these things without letting emotions interfere. Easy to rubbish, but easier to rubbish if you've tried it properly for at least two weeks, and it doesn't work. Can talk more about it if interested.

Stick at it, Buddy.

Guido

Guido,
I like what you said about not confusing hard days with days always being hard. That's a good point. I like the way you think. It seems like a place I'm working toward. Thanks to everyone for the comments as well. This has been really helpful to read. The unpredictability gets tiresome sometimes. Lately I haven't had anytime to do what's necessary to keep myself feeling well, and so it's really been dragging. I'm going to take some of this advice and chew on it for a few days. Thanks for helping me work through the funk.

Hi. It's my two year anniversary also, and I could have written your post myself. I've fallen twice in the last week- once at my daughter's house, and once at the gas station. Luckily just bruises, but it really made me think about where I'm at in life. It is unpredictable. I still find myself thinking "but I'm not supposed to be handicapped." I walk with a cane most of the time, but sometimes use the chair for longer excursions, and people do have a hard time understanding how I can walk sometimes, and sometimes I can't. I think the biggest factor for me right now is knowing that even though I applied for and got my old job back, the occupational health doctors have nixed me working at all. I naively thought I'd be able to go "back to normal."
Thanks to everyone who posted here-- yours words could have been written for me.

Sandy