axialSpondyloarthritis

My rheumatology department switched me from Imraldi to Yuflyma at the end of January. They're both adalimumab but as they're proteins the structure isn't exactly the same. Having said that they *should* work the same as the active site should be the same. Basically yuflyma is cheaper so it costs the NHS less. I was willing to give it a go as its the same medication, although I knew there was a risk it wouldn't work, and well it hasn't... rant incoming!

The last 2.5 months have been sh*t. I had a flare in January before I switched brands- I was getting about 2 flares a year and this one was expected. It was treated with oral steroids. Tbh this flare wasn't too bad as the Imraldi was still working in the background.

Then I switched to Yulfyma. 5 weeks after the last flare (and last Imraldi dose), bam another flare. Again treated with oral steroids which took a lot longer to work than usual, probably because the Imraldi was very low in my system by this point. Rheumatology agreed I might need to switch back, or it could just be an effect of switching brands, so we'll revisit it at 12 weeks of the new brand (it takes 12 weeks to build up in your system to get the full effects).

Well, now 5 weeks after the last flare I'm in another one 🤦‍♀️ I'll contact rheumatology on Monday, get more steroids and switch back to Imraldi. But that also means facing another 3 months of this flare cycle once I get Imraldi back and that could take a little while.

So I'm facing a minimum of 3 more sh*t months and I'm fed up already. There's also no guarantee Imraldi will still work 😫

That 3 months of known crap health overlaps with the spring qualification series for English and British trampoline gymnastics where I compete in the disability category. How utter *insert string of expletives here*. I've been working so hard for 6 months to prep and build up to the season and make improvements to my routines and now it feels like that's all gone out of the window. I had a crap season in 2019 before the pandemic put a halt on everything, and last year was my first season back that was also marred by an injury and then covid. Can I not just catch a break and have a good season for once? 😡

Oh and did I mention that I've got a 3hr drive tomorrow to work from a different office next week? Why do flares always happen at the worst possible time. 😮‍💨 Next week is going to be hell but at least I'm closer to my rheumatology department.

So yeah 2am, I'm utterly broken, fed up, anxious, low, and at my wits end. I don't know what I can do right now to feel better as I've already tried everything. Oh and did I mention I want sleep? Chronic pain sucks.

Somebody just please make AS piss off now and leave me alone for once 😢

#ChronicIllness #ChronicPain #axialSpondyloarthritis #AnkylosingSpondylitis #Arthritis

I have #IrritableBowelSyndromeIBS which also triggers #Migraine s. When I got diagnosed I was started on the low fodmap diet and after elimination and reintroduction I could eat two of the six of the fodmap groups... and fodmaps are in almost everything. Over the years since I have started reacting to more and more foods. Now I react to all of the fodmaps, and even some in "low" fodmap quantities. I'm also no starch for my #axialSpondyloarthritis (#AnkylosingSpondylitis ). So my diet has become VERY limited.

This week I've identified another new trigger and lost yet another food: strawberries.

It may seem like such a small thing, but my heart is broken. I love strawberries and they have been a staple in my diet since I developed IBS. Now for some reason I'm reacting to them, even in a low fodmap quantity 💔

I struggle enough with food as it is. There is so much I can't have it's hard to find food I can eat without consequences and I'm bored of what I can eat. Strawberries were one of the few foods I still enjoyed and looked forward to eating. Now it feels like there are no treats left.

I miss food.

This is just another loss on the #ChronicIllness journey. And I will grieve for this one as I have all the others. And when I am done I will pick myself up and move forwards, because there's nothing else I can do 😞

(I've been working with a functional medicine practitioner for nearly a year to try and improve my gut health and be able to eat more foods long term, which may be why this setback is quite so deeply emotionally painful.)

And need a rant. Feel free to scroll by while I have a little pity party.

My #axialSpondyloarthritis flared a couple of weeks ago. Primarily in my neck causing headaches but also in all the other usual spots. So I'm on a steroid taper to treat the flare. That was going well until I had two nights of IBS attacks and migraines Sunday and Monday. Now my head hurts from AS again 😫 It feels like my head is in a vice and the base of my skull is being hit with a mallet ☠ I'm just so tired. Sleepy tired and tired of my head hurting. Tired of trying to push through and work. Tired of the pain and struggle. I just want my head to stop hurting!!!!!!

#ChronicIllness #ChronicPain #ChronicFatigue #Arthritis #AnkylosingSpondylitis #IrritableBowelSyndromeIBS #Migraine #Headache

What do you do that makes something a little harder for you, but easier/better for others? And is it worth it?

For example, I'm sometimes up in the night with IBS attacks and migraines. Sometimes I want a hot water bottle, but my partner sleeps lightly and wakes up to the sound of the kettle then struggles to fall back asleep. So tonight I tried making a hot water bottle by boiling water on the hob, pouring it into a jug and then into my hot water bottle. It was harder, took longer, and required more concentration. But I think the extra effort for me is worth it for not waking him.

Another example might be not asking for a meeting to be moved when it starts earlier than you usually do. For me that makes me more stressed out in the morning as I'm rushing more, and also means I have to cut my morning walk short, or skip it entirely. Reflecting on it: totally not worth it. In fact I now tend to ask to move meetings instead of suffering through.

Share your experiences and reflections with me ❤

#ChronicIllness #ChronicPain #ChronicFatigue #Arthritis #AnkylosingSpondylitis #axialSpondyloarthritis #IrritableBowelSyndromeIBS #Migraine #CheckInWithMe

Had a bad night last night thanks to IBS. Tonight I'm awake and downstairs at 2am thanks to AS. Also still got a headache. I feel like I've had a headache for weeks now. I'm so tired and have work tomorrow. Plus I only just had my big kicker medication (a biologic for AS) on Friday that I take fortnightly. I just want to feel better now please 😢

I want to sleep through the night
I want to fall asleep easily
I want to not increase my meds
I want to know how to help myself best (that one made me cry yesterday morning as IBS/migraine/headache wasn't done with me when I woke up)
I want to be able to exercise when I want
I want to be able to think. And think clearly
I want to stop struggling

I suppose all I can do is keep putting one foot in front of the other. Keep plodding along and listening to my body and doing what it asks of me. But oh, how emotionally tiring that is today.

Keep plodding along fellow fighters ❤

#ChronicPain #ChronicIllness #ChronicFatigue #Arthritis #AnkylosingSpondylitis #axialSpondyloarthritis #IrritableBowelSyndromeIBS #Migraine #Headache

I feel panicky right now. Its been a weird emotional roller coaster day so far and it's not even lunchtime yet...

I had a TERRIBLE night thanks to #axialSpondyloarthritis - I was up for several hours trying to lessen the pain and then when I went back to bed I still couldn't sleep because I still hurt too much. Also not entirely sure whether my overnight headache was from AS or a migraine 🤷‍♀️ So I'm tired and in a lot of pain still (although less than overnight!). I was also really stiff when I got up this morning. Thankfully I had a really nice walk after breakfast: it was frosty and beautiful ❄ My TENS unit is what allowed me to get out and walk and I managed to stretch gently afterwards and get rid of most of the stiffness.

Next I had a zoom meeting at work which went well. Apparently my brain was the most awake out of everyone there 😂 A lot of us are suffering from holiday brain!

Then I started doing my actual work and asked some questions in the wrong channel and got told (nicely) where I'm supposed to ask. So now I feel all crazy panicky eventhough I can logically see that I'm smart, I'm doing well at my job, and I simply made a mistake because I didn't know something- I'm helping out a different team at the moment so new to how they work.

Also I've had a lot more tramadol than usual in the last 24hrs so I'm feeling very talkative- I don't get high anymore just talkative 😂 I wonder whether that's making my brain run at a million miles an hour which is causing some of the anxiety 🤔

I just want my mind and body to calm down and realise I'm not in danger and I don't need to fight flee or freeze

#ChronicPain #ChronicIllness #ChronicFatigue #Arthritis #AnkylosingSpondylitis #Anxiety #IrritableBowelSyndromeIBS #Migraine

Oh dear. I've put my main medication, adalimumab, on hold as I started getting a sore throat last week and possibly going down with something. Adalimumab is an immune suppressant and my rheumatologist says to stop taking it if ill. I was due adalimumab on Friday (it's taken fortnightly). Well I had an awful night last night: woke up in pain twice (at 2330 and again at 0300) and had to get up and get ice, take meds and move about/stretch/massage both times. I also think I had an IBS attack and migraine the first time too 🥴 Today my work consists of reading and understanding a specification and I'm tired and fatigued. Let's just say that's not going to go so well. Its 11am and I just had my first fatigue crash of the day: lying on the floor unable to move while my body reboots. It's going to be a long long day and an even longer week 😴

#AnkylosingSpondylitis #ChronicPain #ChronicIllness #ChronicFatigue #axialSpondyloarthritis #IrritableBowelSyndromeIBS #Migraine #Immunocompromised

I feel pretty hopeless at the moment. Like there is no light at the end of the dark covid tunnel. Covid cases here in the UK have been bad since everything opened up in the summer. I am still mostly isolating at home due to being immune suppressed from a medication I use for my arthritis. (Side note: it's easy for people to say "it's OK to go out" but when it's your own life and health on the line, well it's an entirely different matter isn't it.)

I am VERY fortunate to have an understanding workplace. I work solely from home and it's not a problem at all. They also offer a lot of great benefits, one of which I made use of today. We have access to a free helpline that can connect us with a counsellor. I accessed that service today and it was so helpful. I'm no longer crying the entire time. I still feel trapped in the dark tunnel but now I know there is always someone I can talk to. Plus I'm getting some counselling sessions with someone starting soon. I need to grieve for the life I had before covid because I'll never get to go back to that. I don't know whether I'll get to go back to training trampolining or not. I really hope one day I can, but I worry that all the time I've had away means my body won't be able to handle it anymore.

Chronic illness is a never ending grief cycle for one reason or another. And its okay to ask for help.

If you need help today, I hope you can access it.

#ChronicIllness #ChronicPain #Arthritis #AnkylosingSpondylitis #axialSpondyloarthritis #IrritableBowelSyndromeIBS #Migraine #MentalHealth

Current feeling: "My f***s have runneth dry"
(Warning: this video is explicit)
youtu.be/TXK03FHVsHk

This is actually a GOOD thing!!! I've been working with a hypnotherapist about a few issues, the root of which are being bullied as a kid at school (multiple schools and various ages). Tonight I've had a breakthrough (thanks to journalling) and quite frankly aimed at the bullies:

F*** you. You are small minded and I did not and will not play your games. I walked away then and I walk away now. You can not and will not EVER control or hurt me ever again. I am above you as I always have been. I am valid and valued just as I am. 🖕

#MentalHealth #Recovery #ChronicIllness #ChronicPain #ChronicFatigue #Arthritis #AnkylosingSpondylitis #axialSpondyloarthritis #IrritableBowelSyndromeIBS