how do you cope when the morale is at its lowest?

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manuella26

Edited on 25/06/2018 at 13:41

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manuella26

Last activity on 19/07/2021 at 16:20

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8 comments posted | 7 in the Living with ankylosing spondylitis group

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Hi I'm new to this forum. Was diagnosed 6 months ago, now on naproxen.

At times I feel so down, with no one to talk to, because they don't understand. They think its just back pain and everybody gets it so I just gave up trying to explain. ain wakes me up at night, makes it hard to get up in the morning, I had to cut back on all the activities I used to have.

How do you guys cope with all that? What do you do to keep the mood up and not to sink into depression? How hard does it get, later on?

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Scouserdog

27/06/2018 at 23:08

Scouserdog

Last activity on 21/04/2025 at 07:43

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I am 71 and pretty much housebound. I live alone and my friends have mostly disappeared. It helps to talk to other people with this on Facebook because basically they are the only people who understand the pain levels, the exhaustion and the grief for the expected life that you have lost.

I used to love walking and playing with my dogs, taking them sheep herding, travelling, wandering around antique shops and markets, gardening, cooking and entertaining, teaching English to migrants, volunteering in dog rescue and other community groups. All these have had to go and I have not found anything to replace them.

It is so hard to see people doing the things you liked to do but cannot any longer. I feel as though I have been given a life sentence of home imprisonment with extra pain for a crime I did not commit.

how do you cope when the morale is at its lowest? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/how-do-you-cope-when-the-morale-is-at-its-lowe-2422 2018-06-27 23:08:26

GloriaG

28/06/2018 at 12:18

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GloriaG

Last activity on 28/02/2023 at 00:50

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Hello everyone, I do understand how this all feels, the loneliness and the lack of understanding from friends and family. They are healthy and don't believe this could happen to anyone in their right mind and once a dear friend said to me, "how are you,you old faker". That did it for me, and I have been just about a recluse ever since. Until I got the idea of writing a book not just any book and not really about my woes, just thoughts on life and how it twists and turns so cruelly. for so many people. I rarely leave the house and when I do I go somewhere nobody knows me and don't see me in my wheelchair, or with my walking frame, I used to be a medical practitioner, which seems to make the whole thing worse. I just want it all to end but I still have one teenager at home who doesn't seem to understand that I don't really want other teenagers in my home for "sleepovers". I just want to hide. Love to you all...G

JosephineO

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12/11/2018 at 10:32

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JosephineO

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989 comments posted | 32 in the Living with ankylosing spondylitis group

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@GloriaG @Scouserdog‍ @manuella26‍ I hope you are all doing well, any updates?

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Josephine, Community Manager

Scouserdog

12/11/2018 at 11:47

Scouserdog

Last activity on 21/04/2025 at 07:43

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My life is still hell with no prospects of improvement.

JosephineO

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12/11/2018 at 12:13

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JosephineO

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@Scouserdog Hi,

I'm very sorry to hear that you're still suffering, have you subscribed to our discussion group, "living with chronic pain"? Here is the link, you might find it useful as we have written about apps that help with pain and different aspects of pain management.

I hope it helps xx

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GloriaG

20/11/2018 at 00:21

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GloriaG

Last activity on 28/02/2023 at 00:50

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@GloriaG Hello, I understand this situation, it's a lonely life with AS. People don't know what to say, so they tend to disappear so they don't have to be a part of it at all. This hurts so much. The trust one had in ones best friends is lost. I wonder what was a best friend...was there one at all !! ever. So I wrote a book, part a true story and part fantasy, to cover what I had hoped life would give me.

Sometimes it hurts to write it down but there are times when it was very therapeutic. Try it, it might help someone somewhere.

how do you cope when the morale is at its lowest?

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