Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group life...?

I'm feeling pretty low right now. I'm hurtin' and I'm depressed. I'm in a tired cycle cuz of this and fibromyalgia. I'm waiting to get enbrel, which I hope will help turn my life around.

That's my main problem. I have no life. This pain dicates all. And the weather dictates the level of pain. I live on the west coast of Canada. The wet coast. The weather for the last month or two has been teasing me with glimpses of lovely hot, then rain. back and forth. I'm going nuts from the pain and my inability to get on top of it.

I sleep too much, and I never feel rested. I spend so much time alone. I've just come to terms with the fact that I have to kibosh my friend Ang - my last best friend to go. She doesn't seem to want to hang with me, and it breaks my heart so I can;t make the effort anymore.

That was whingy, but I had to get it off my chest. I was wondering if anyone has any helpful tricks to getting out of bed?

-Vans

Plain old will power. Right now I could be in there snoozing but I MADE myself get up at 6:30. One little baby step at a time. Have you talked with your dr. about this? It could be that you need an anti-depressnt. I imagine if we took a poll, most of us would be on an anti-depressant.

I understand about your friends disappearing. That also happened to me in 1987 when I had to go on disabiity. People, as a whole, can't understand chronic illness. What they understand is that people get sick and then they get bettr or they die. They have no concept about what it is like to feel bad and hurt day after day.

What I chose was to not talk about my situation except where it is safe (like this forum). You soon learn who truly wants to know how you are and those with whom "How are you?" is like saying "hello". This goes for family members also. I had even had one of my children tell me I focus too much on myself and my illness (like if I don't I can't get out of bed):o) I just know she has no idea what it is like. So-o-o I just never ever mention to anyone how I feel except for 2 very dear friends.

I hope you have a glorious day today. Put on some good music. Find a good book if it is a bad day. I hope you feel good enough to get out. If I just get out for a little while every day it helps me.

Hugs from Oklahoma
Possi

hi Vans, I'd have to echo Possi on the will power, i'm in pain every day, i'm so tired i feel dizzy half the time, my stomach is a mess and all i want to do is lay in bed....but i don't, i get up at 6:30 every day and commute into work, i'm too scared not to and i can't let this be all there is to my life. It is soooo hard though.

I too have lost a few friends over the last few years, or realised to my dismay that people i thought were great friends are really just ok friends and i've pulled back. Like Possi I know who I can moan too about all of this and who can't take it or can't be bothered to try and understand.

Last year it all did get on top of me however and i ended up on anti-depressants for a while, I also starting seeing a counsellor who i saw weekly for 6 months, and I let my GP sign me off work for 5 weeks - the combination of all 3 helped enormously and i would definitely recommend talking to your doctor.

You need to find something to get you out of bed if you're not able to work, i know this sounds daft but in the past when i've felt like that i've got into a TV show (i love TV) thats on in the morning and it gives me an incentive to get up and watch it....then i'm up...just something small that worked for me.

Sounds to me like you have it figured out, Sarah. No one can do this for us but we can be here to hold each other up.

It gets hard sometimes. This waiting on the Parkinson's diagnosis could keep me in bed if I dwelled on it but hubby keeps saying "wait to worry". Most things we worry about never happen.

It was amazing to me which friends stayed and which went away. The ones that left weren't really friends any way.
The ones that stayed are my lifeline. I cherish them.

We will all get through this and life can be good. Life IS good. Every day we just have to make the most of it and live it like its the last.

Hugs to you both.
Possi

vans... surely someone has told you to roll out of bed... i'm having a trapeze (one of those hanging triangles they put on top of your hospital beds) installed in my bedroom. i've always been amazed at what i can do with one of those.

unfortunately a lot of us can understand the depression... how are we supposed to feel?

you are in my thoughts!

beddy bye hugs,
teddi

If I do not get out of bed the dog will pee on the floor.
The horses will starve.
The cats will start climbing the window screens and yowling for Friskies.
The husband will start climbing the window screens and ...you get my drift.
My body will go into rigor mortis if I spend more than 6 hours in bed. I cannot WAIT to get up in the morning just to stop that from happening.

I don't get up fast but I can't stand laying there.

I AGREE....will power...believe me been there and still there....I have to really make my self get-up... I take notes on what I need to try to do the next day...make phone calls...house needs...appts etc.....you just have to try a little harder..I take potassium also..take breaks too...Sending you plenty of hugs ....take care

ditto!

hi Vans!

This is something I struggle with almost daily. Thankfully I have a large group of support groups on the internet that help to get me out of the bed daily. I also have kitties and a husband who also help to get me out of bed. There was a time that I was in bed 5 days a week but I found that the same thing as all the others have said works the best: will power. I let myself linger in bed for as long as I could until I realized that if i didn't get out of bed I was going to whither away into nothing.

As for the friend's thing, I also lost a majority of my friends because of it. Not many of my friends were willing to deal with what goes along with a wheelchair, gimp, cane, etc and in the long run, it's ok because I now have friends that I know I can trust to help out when things go bad.

Fee free to private message me anytime, if you are on AIM let me know what your aim name is.Some days I spend hours just talking to friends on the net because there aren't any real life ones around. Plus, most of the friends I used to have, were the kind that wouldn't ever come to my house, so it was easy to see who was willing to come here and still be a friend.

Its a tough road, but you are definitley not alone, specially if you are able to reach out and ask for help here.

tela