Ankylosing Spondylitis

I had a really bad setback today. I got really depressed, and didnt have a reason for feeling so hopeless. I felt inconvenient, and lonely, even though no one said or did anything. And no one needed to. Healing isnt linear, and I know I'm going to have flare ups(whether that be POTs, Arthritis, or just depression), no matter how much prevention I do. And it's hard to deal with, but it didnt ruin my day, or up-end my progress. Instead I went out, and did something fun. I still feel kinda bad, but I know it's just a little road block. I dunno.

#POTS #AutonomicDysfunction #MentalHealth #Depression #Arthritis #AnkylosingSpondylitis

Last Friday, in the early hours, my pet bunny passed away. She was with me for eight years. I miss her so much. We rushed her to the emergency vet as she was struggling to breathe. We had to euthanize her because she was living with a congenital heart disease and her heart had swollen and started crushing her lungs. She had adapted slowly over the years and then suddenly she was out of time. I hope she is hopping over the rainbow bridge 💔💗🐰 and joining all my other bunnies there too. I've had pet bunnies my whole life. I really really miss her. It's been so hard to clean out her hutch and her things without her here.

To top it all off I overslept due to not sleeping well (was crying the whole night) and then I was late to work (really late).

Some colleagues had flown up from Cape Town and from Ireland for a workshop and I was late to meet them. Horrible first in person impression....

Then the following week Monday my period started. On top of this at the conference venue they served gluten, sugar and milk at almost every meal. My IBS started flaring from Tuesday onwards...

I was late again twice that week. I'm not proud of that.

Finally on Friday I was really early to the workshop. But this time the conference served peanuts inside their creamed spinach for lunch. Triggering a whole peanut poisoning episode... I left work early in a rush and a panic to get to an EpiPen at home (also not great - as it was the last day of the workshop and we had to say goodbye to our foreign colleagues). Not great for my work performance honestly.

This is why I have a remote job. I can manage my conditions remotely, even when there are many uncontrollable stressors like my bunny dying... But if you add going into an unfamiliar conference venue everyday where they just poison you nonstop...

Yeah I feel totally shit after this week... Physically and mentally...

How do I CBT this?

#prurigonodularis #AnkylosingSpondylitis #PsoriaticArthritis #Grief #MajorDepressiveDisorder #GeneralizedAnxietyDisorder @ @ @

Has anyone had experience with a pain pump. I am scheduled to get one implanted but a little nervous about it as many meds just do not help me. #AnkylosingSpondylitis #Arthritis #RheumatoidArthritis

Hello everyone, I hope you’re all doing well. Because of ankylosing spondylitis and the medications for it, is it common to feel constantly exhausted and struggle to finish work on time? How do you manage frequent delays and cancellations? #AnkylosingSpondylitis #ChronicFatigue #Uveitis #MentalHealth

I just got on the waitlist for a disability advocate and I’m also looking into a power assist add-on for my wheelchair. I’m waiting on a phone call from both agencies. #AnkylosingSpondylitis

Recently, the gastrointestinal issues that I had dealt with since March 2024, have returned with a vengeance. I am finding it harder to eat solid foods. Although I have a medicine that makes it easier to process foods, I still cannot eat normally and can’t eat a full meal. Every time I eat, I have sharp abdominal pains. I’ve been wondering if I should ask my GI doctor to temporarily put me on a feeding tube to give my colon a break and maybe heal a bit more.

#AnkylosingSpondylitis