Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group So frustrated at the little things

Today I went to see a friend who is in hospital.
The train trip was only half the distance I used to travel regularly (just over an hr) and it almost killed me. 2/3 of the way there and I start crying as the pain is so bad, people are looking at me strangely.
Something so little I didnt even have to do anything and it hurt so much. Not that long ago I wont have even given the trip a second thought I would have just jumped on the train and off I go.
And yesterday at the kids nipper champs. It only went for half a day and I did take it realy easy yet when we got home I slept for ages as I was so worn out. And then of corse it only made me stiffer and therefore more pain grr.
Ok so yeah not feeling real good today.

Didnt help that the friend I went to see I find out that when they did the op they didnt end up doing the historectomy because instead of a 4mm tumor they found she was riddled with cancer. I feel guilty winging about my pain when she is having to deal with that.

Ok will stop babling now and no I haven't said sorry so I am getting better.

Im finding the fatigue hard to cope with at the moment although Im not in a lot of pain I just feel so tired all the time.If im sitting in my recliner were Im most comfortable I constantly nod of. It really gets on my nerves I just want the energy to stay awake and do more.I never used to be like this I suppose it could be the long winter we have had this year thats brought it on. I hope now spring is here and the weather is getting better I will find more energy to do things.
So your not alone in feeling so tired.

Kevin

Thanks Kevin.
I honestly dont know what is worse sometimes. The pain or the constant fatigue. Or that the fatigue causes sleep and sleep causes pain grrr vicious circle.
And now my nrain doesn't want to work, I can't spell and heck son't even want to think about grammer.

Oh and can anyone tell me if they have problems with speach at all.
I have found lateky I go to say something and the words get all muddled and I have to stop and think about what I am going to say and then do it slowly. Anyone else experience this?

Its funny you saying about speech I used to suffer like that I coudnt say certain words and they would all come out wrong.Dont know why I dont seem to get it now days thought it was just me being Im so weird ha ha.


Kevin

I can relate, too. I think the reason I have gained 20lbs this past year is because I was eating to try to get through the day with the horrible fatigue. I don't feel like I can nap when I'm home with just the 4 and 5 yo and when the older ones get home from school, they need me. 'Course, napping would increase the stiffness, so I feel damned if I do and damned if I don't. My AS was untreated for years and I beat myself up for not having the energy and stamina that my friends had. Looking back, I see that it is "just" the overwhelming fatigue that accompanies AS.

Hi there, I'm so sorry to hear about your friend.

I would suggest that if you have to take long trips, get up and walk about or stretch a bit to ease the strain on your body. When you're on a train (or plane) people do look at you a little oddly, but I figure that's their problem, not mine. You do what you need to in order to accomplish your goal. OK?

Don't feel guilty about moaning about pain, and please don't compare yourself to your friend. She has had an awful diagnosis, to be sure, but your pain is your pain. You have to live with it every moment of every day. Frankly, if you want to whinge a bit, go right ahead.

Hugs,

I can really understand about the train trip. I had to go to an awards program for my 2 DGDs and when we got there, I found that we had to sit in bleachers. I was in so much pain, just trying to sit still and not disturb anyone. I finally took off my coat, rolled it up and sat on it for some padding. I would have brought a cushion if I had known we had to sit on bleachers.
Donna

Thanks Kat for the hugs. My friend was so amazed that I made the trip just to see her and that made it al worth it to know that it meant so much to her.

Kevin wierd the words thing I realy hope this doesnt last as talking is my fav past time

Donna I hear what you are saying about sitting on bad seats I honestly think some cruel twisted little man is behind every bad back breaking seat.

And boy was I tired when I typed my last post. Honestly had no idea the typos I made and no it was not intentional for effect.

I wonder is it possible to tare a muscle just from walking.
My right thigh is killing me.

Yes I suppose it is possible but unlikely.When Im bad the pain in my thighs is terrible a deep burning pain with a sharp stab now and again.

Kevin