Back

Patients Ankylosing spondylitis

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

63 views
1 support
7 comments

manuella26

Edited on 25/06/2018 at 13:41

Good advisor

manuella26

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

Joined in 2018

8 comments posted | 7 in the Ankylosing spondylitis Forum

Rewards

Good Advisor
Messenger
Explorer
Evaluator

View profileView Add a friendAdd Write

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?

All comments

Scouserdog

27/06/2018 at 23:08

Scouserdog

Last activity on 24/07/2020 at 11:35

Joined in 2018

15 comments posted | 12 in the Ankylosing spondylitis Forum

Rewards

Contributor
Explorer

View profileView Add a friendAdd Write

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/ankylosing-spondylitis/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

Good advisor

GloriaG

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

Joined in 2018

107 comments posted | 47 in the Ankylosing spondylitis Forum

4 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Friend

View profileView Add a friendAdd Write

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

Community manager

12/11/2018 at 10:32

Good advisor

JosephineO

Community manager

Last activity on 15/07/2024 at 09:21

Joined in 2018

989 comments posted | 32 in the Ankylosing spondylitis Forum

6 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator
Friend

View profileView Add a friendAdd Write

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

See the signature

Josephine, Community Manager

Scouserdog

12/11/2018 at 11:47

Scouserdog

Last activity on 24/07/2020 at 11:35

Joined in 2018

15 comments posted | 12 in the Ankylosing spondylitis Forum

Rewards

Contributor
Explorer

View profileView Add a friendAdd Write

My life is still hell with no prospects of improvement.

JosephineO

Community manager

12/11/2018 at 12:13

Good advisor

JosephineO

Community manager

Last activity on 15/07/2024 at 09:21

Joined in 2018

989 comments posted | 32 in the Ankylosing spondylitis Forum

6 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator
Friend

View profileView Add a friendAdd Write

@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

See the signature

Josephine, Community Manager

GloriaG

20/11/2018 at 00:21

Good advisor

GloriaG

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

Joined in 2018

107 comments posted | 47 in the Ankylosing spondylitis Forum

4 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Friend

View profileView Add a friendAdd Write

@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.

Members are also commenting on...

Articles to discover...

18/03/2024 | News

How does ankylosing spondylitis affect the bones?

11/03/2024 | Nutrition

The effects of diet on ankylosing spondylitis

12/01/2024 | Advice

Who should be on your ankylosing spondylitis (AS) healthcare team?

25/08/2023 | News

The benefits of physical activity in the management of ankylosing spondylitis

29/10/2018 | Testimonial

Using cannabis for ankylosing spondylitis

08/03/2018 | Testimonial

Living life to the fullest despite ankylosing spondylitis

25/04/2017 | Testimonial

Managing rheumatoid arthritis and ankylosing spondylitis

24/10/2019 | Advice

What is biologic therapy? A focused look at inflammatory diseases

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

All comments

Give your opinion

Members are also commenting on...

Articles to discover...

Medication fact sheets - patient opinions...