It's been a long time but things are getting bad

[long road]

Aww thanks. Nice to have virtual company.

I have got up and had breakfast and am part way through meds

Hope you get some good sleep soon though.

[long road]

Steroids definitely make me somewhat manic. My blood is fizzing and thoughts are racing. Hopeful the mania fades as the day goes on its usually worse in the morning as I have just taken my daily steroid dose.

Have the zoomies and so badly want to do some kind of physical activity. However my lungs would not thank me so trying really hard to occupy myself with low impact activities. Done a load of life admin this morning. Means more cognitive load which isn't best for my FND but it's best way to use this manic energy and hopefully avoid an asthma attack in the process.

Anyone got any tips for dealing with mania? It's not something I really experience unless I am on steroids so not really sure what to do with it.

Also apologies for how rambly I have been in general chat the words are just flowing out and my filter is mostly gone.

[one_step_closer]

Can you listen to some up tempo music, if that's the right description?

[long road]

I actually tried that on autopilot. Listened to music from around 8am through to 12:30pm. Looking back I do think it helped a little. So thanks for suggesting so I can do it on purpose next time.

Still a bit wired / manic but a wave of exhaustion has hit have come to bed to attempt to rest propped up on many pillows, going to listen to a podcast or an audiobook. Don't think it will be easy to stay put though. And wil be even harder to nap.

[one_step_closer]

Did you manage to nap or even just get some rest?

[long road]

Got about an hour of rest listening to podcast and lying propped up. But couldn't settle to sleep.

Then had anxiety get triggered because I found out partner's sister has caught a cough / cold virus thing (thankfully Covid negative so far) and that's the last thing my lungs need right now. Not seen her since Wednesday and she got symptoms today but she did do a couple of breaths if mouth to mouth on Wednesday so if she had it then there's a good chance I do/ will develop it.

Called the asthma UK helpline which has helped reassure me a bit and trying not to worry about something I cant control. I could have picked up dozens of viruses just from going to the hospital so much in the last week anyway. But then noone from hospital basically kissed me (it also weird that partners sister has basically kissed me even though it was a medical thing). But there is still a chance I won't get it.

Longer more rambly version avaliable in my RV but no pressure to read it.

It is definitely harder to calm down when on steroids and slightly manic anyway.

[long road]

Finding it even harder to relax and trust my lungs today after feeling really good all morning/ afternoon yesterday but having to call an ambulance again at dinnertime. Just feeling anxious I am going to have another attack and wnd up with more ambulances and hospital trips and just so much stress.

Although at least this time I avoided hospital. Paramedics gave me a nebuliser, which stabilised things, then they monitored me for an hour or so and then left me at home to sleep in my own bed. Really appreciated them doing that rather than saying I ought to go to A&E just to be safe. Felt more comfortable being left as well as have treatment plan from Thursday.

It was a slightly less severe attack this time so progress! But yeah still not the best / most encouraging sign.

Had a bit of a cry while they were here letting out some of the extra stress of last 2 weeks and sharing a bit about the medical trauma.

Have made a big medical to do list to ring up and ask GP surgery about on Monday. Will probably try and see the nurse practioner I have seen 4 times on last 10 days again. She is really nice, great bedside manner and listens well

[Auror.]

is the nebuliser a thing you can do yourself at home? that sounds useful!

thinking of you.

[long road]

So a few people who have been officially diagnosed with severe asthma and need them every day get nebulisers to use at home. But with my asthma if I am bad enough to need a nebuliser they want me to be reviewed by a medical professional in case I need extra intervention on top. As attacks are usually a rare occurrence for me and as my oxygen levels can go down and heart rate go up very high.

Luckily I live 5 minutes drive from my local hospital. And kind of luckily asthma is a category 1 call which means the ambulance aim to be here in 7 minutes or less. Only kind of because it's a category 1 call because of how dangerous it can be.

But it does mean if I need treatment I can get it super quickly.

Thanks for the thoughts, I am currently just about keeping things under control still using my reliever at regular intervals but haven't had a full on attack today

[one_step_closer]

Keep going you wonderful person. You deserve some peace.

[long road]

Things have been better breathing wise last few days, still not well but better.

Tomorrow however is the day I step down the amount of steroids I am taking. And even though GP thought me having an attack on step down day last week was a coincidence I am nervous and a bit scared.

Also FND is so annoying today so many muscle twitches and spasms.

[Auror.]

we hope it goes okay and doesn't make things worse. it does sound so scary, no wonder you are nervous about it.

muscle twitches sound v unpleasant. we hope they pass soon. <3

[long road]

Thanks Camden.

Taken the lower dose this morning, last time I lowered the dose started to feel worse by mid afternoon/early evening so if I get through today ok then I think I can relax.

Turns out struggling to breathe is scary. I always forget how scary until I am in a flare up again as my brain doesn't fully record the fear or forgets it or something. Apart from during flashbacks then I get fear full throttle.

Muscles twitches are very unfun. Ended up getting really painful by bedtime so I took my strong painkillers. Which had the nice unintended side effect of me falling asleep just before 11 so got 7 and a half hours sleep.

*Touch wood* but so far both muscles and lungs appear to be behaving this morning

[one_step_closer]

I hope you continue to feel a bit better today and can relax a little at least. Thinking of you.

[long road]

I think I might be ok. Had a little flare up of symptoms this afternoon but not a full on attack.

Can't shake the fear though. Maybe I will be able to if I get through tonight without ambulances.

My parents are coming to visit from tomorrow and despite the fact I have had asthma my whole life they have never been around me when I have had a serious attack before as didn't need ambulances until after I had moved away from home. So nervous about them potentially seeing me that ill. But looking forward to parent hugs

[Auror.]

sending love your way

[Accidentally Abstract]

Glad you've been okay so far on the lower dose and hope tonight is uneventful and you get hugs from your parents tomorrow!

[tamobhuuta]

I hope you have a lovely time with your parents today.

[long road]

Thanks guys.

Parents should be here sometime after 1pm. They will be staying until Sunday Morning. So pretty much 3 full days of time together.

Also to add that current dose of steroids is much less mentally spicy. Mania/zoomies is reduced for sure.

And asthma while still not under control is definitely better than 2weeks ago when I started steroids and this time a week ago when I last ended up in hospital.

[Accidentally Abstract]

Glad things are improving somewhat, hope it continues! 3 full days together sounds really nice. :)