FAO Singr: <Thanks for your support. Unfortunately... - PMRGCAuk

PMRGCAuk

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FAO Singr

Primarose
Primarose

<Thanks for your support. Unfortunately I’m not there yet. I’ve lost my life, my looks, my figure and every door to any kind of hopeful future seems to be slamming shut. In the midst of a really bad relapse just now with little or no medical help and I’m really sad to say for the first time in my life I feel I’d rather not wake up. Hoping I’ll get through this. Sorry this all sounds me me me.>

Beware long post!!

So it should be; you, you, you. You have been through hell and back.

I felt like this a year ago. I couldn't even listen to my music or do my sewing, I had no zest for life at all. It was enough for me to cope with living. I hated looking in the mirror, it wasn't me I was seeing it was someone else, can you relate to that?

I couldn't do a proper food shop so I had on-line shopping. I felt that even the smallest tasks were too much for me to cope with. Whatever I did took three times longer and thought to myself how can I cope like this.

I bought some trekkers so that I could at least walk short distances, me legs kept giving away!! Getting up the stairs was like climbing a mountain and not good when you were desperate for a wee!!

I think that I may have been suffering from Post-traumatic stress disorder for a while and maybe you are as well.

My daughter suggested getting counseling to help me through but that was too much of an effort.

Over the months things very gradually improved and I was able to do normal everyday things albeit a lot slower.

You need to give yourself time to come to terms with your illness. We can't do anything about the side effects of the prednisolone which can be as bad as the disease itself.

Think of how you were before this disease got hold of you and that is how you will be eventually, it will take time but hang in there, you are well strong to get through it. Lots of posters in here have done it, you can, I know you can, just like the Little Engine that Could:-

There was a little railroad train with loads and loads of toys

All starting out to find a home with little girls and boys

And as that little railroad train began to chug along

The little engine up in front was heard to sing this song

Choo choo, choo choo, choo choo, choo choo, I feel so good today

Oh, clear the track, oh clickety clack, I?ll go my merry way

The little train went roaring on, so fast, it seemed to fly

Until it reached a mountain rising almost to the sky

The little engine moaned and groaned and huffed and puffed away

But halfway to the top it just gave up and seemed to say

I can't go on, I can't go on, I'm weary as can be

I can't go on, I can't go on, this job is not for me

The toys got out to push but all in vain alas, alack

And then a great big engine came a whistling down the track

They asked if it would kindly pull them up the mountain side

But with a high and mighty sneer it scornfully replied

don't bother me, don't bother me to pull the likes of you

Don't bother me, don't bother me, I've better things to do

The toys all started crying ?cause that engine was so mean

And then there came another one, the smallest ever seen

But though it seemed that she could hardly pull herself along

She hitched on to the train and as she pulled she sang this song

I think I can, I think I can, I think I have a plan

And I can do 'most anything if I only think I can

Then up that great big mountain with the cars all full of toys

And soon they reached the waiting arms of happy girls and boy

And though that ends the story it will do you lots of good

To take a lesson from the little engine that could

Just think you can, just think you can, just have that understood

And very soon you'll start to say, I always knew I could

I knew I could, I knew I could, I knew I could

I knew I could, I knew I could, I knew I could, I knew I could

I love children's songs, Puff the Magic Dragon still brings ear to my eyes.

I now have two skirts and five tote bags sewn and play Led Zepp at full blast.

There is light at the end of the tunnel but if anyone had told me this last year I would have cried or hit them over the head if I'd had the strength.

Hang on to that spirit!!

8 Replies

Love the poem.....and Led Zepp....always music, all helps😀

Hello again, Primarose.

Doing my best to 'hang on to that spirit' - I identify w much of your description. It's not easy, is it.

I'm 22 months in now (GCA). Did have patches of feeling a bit better, during the last year, but seem to have hit a barrier again, and feel as if I'm going backwards. Haven't been out for a month - weak n wobbly, w intermittent jelly legs and unpredictable pains. Wish I had a guarantee that this is only temporary - but who knows?

Left to myself, I might not be bad at 'hanging on'. But I can't do a fraction of what I used to do, and find that 'friends' are losing interest. Even my OH (who isn't too well himself) is losing patience, and keeps telling me to 'go and see your doctor'. Haven't found that particularly helpful, on the whole. And I've been discouraged to find that, once I can't get out n about so much, the friends I used to meet up with are tailing away. That's the most discouraging of all, I think.

But ok, will keep on chugging slowly up the mountain, chasing the light. I will if you will - right?

Hang on in there.

Primarose
Primarose in reply to BonnyQuine

We'll get to the top of the mountain one day as long as there isn't an avalanche!;-)

I know what you mean about friends loosing interest. I met up with my friend of over 30 years now last week, our meetings seem to be far and few between now. All she said was " You're looking well". Maybe I was after doing a polyfilla job to hide the ill bits.:-)

As I said in another post, it would be ideal if we knew how long our illness is going to last.

I've had GCA for 19 months now and and can do most of the things I used to do, so probably fairing better than you at the moment.

When they say that life is a bitch they aren't kidding are they!;-)

Primarose
Primarose in reply to BonnyQuine

What a right berk I am BonnyQuine, my apologies to you, silly idiot (that's me) got the post title wrong it should have been FAO of BonnyQuine not Singr.

That was because we were in that thread and I got a bit confused, serves me right for high-jacking!:-)

I'll call it a senior moment, I am sorry.

BonnyQuine
BonnyQuine in reply to Primarose

No sweat. There aren't many rules, and I, for one, hardly ever know where I am these days, anyway!

They always think we look well. I just say it's the steroids.

Back to 'Always look on the bright side . . . '

:-)

Bonny I've lost so many friends. It hurts. I know people are busy. I know they feel helpless that they can't actually do anything. I know it sucks listening to a grumpy bum. But they were very important to me. It hurts. I got round it a bit by starting my own Facebook group but have been in steroid black mood for a while and not able to find interesting stuff to put on it. Also nothing substitutes a real person. Please can you let me know how you are? I don't know you but honestly.....I do care. Xxx Linda xxxxx

Thanks Daisy. Not functioning well today. Bad night too - think am having a flare. July was a bad month, and this week has been dire.

Going to put my pred back up a bit. Sod side effects! Next week will feel better, fingers crossed.

Hope things improve for you. Remember, for every down there will be an up.

On wards . . . .

Primarose. Please update me. I can't stop thinking and worrying about you. I'm sure I am being neurotic but I want to hear that you are ok. Much love. Linda xxxxx

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