This all sounds very intense, I am glad your partner's sister was able to come and help you both. I hope that you don't need to go to A&E or have a hospital admission, but I am glad you have a lot of support and your GP is on the case. I think you're managing all this incredibly well, and hopefully you won't have to manage quite so much very soon.
'It's an impossible choice ... I'll just have to hope that when I flip the coin it somehow explodes and kills me.'
"You're not scared of climbing mountains. You're scared that you can't make them move."
Thanks Lio. I feel like I am only just managing, like I am at full stress capacity and easily spilling over. But I am managing and that's something to be proud of. Hoping I will have less to deal with soon too. I am so grateful for the year and half of therapy I did May 2021 to November 2022, would not be able to manage without the skills I learned and the bits we worked on.
I get on really well with my partner sister and she understands the mental health side of things so it's been good sitting with her chatting. Combo of chatting with her, having a plan with GP and knowing partner is getting some rest means while I am still having asthma symptoms the anxiety side is more under control.
Last edited by long road : 15-08-2023 at 05:42 PM.
It's hard for me to let people in, even when we both need help. But I managed to today, pushed myself because it's rare that my partner breaks down like this, so I knew it was serious. And I am glad I did. His sister is going to come over again tomorrow afternoon to check up on us. And make us dinner again.
They tried to take me to AMU rather than A&E but AMU is packed. As is A&E with ambulances crewing in he corridor. I got checked out in back of ambulance and cleared to sit in A&E waiting room so I don't have to be in corridor and ambulances crew could head off to next person. I am not feeling well at all. Heart rate is super high. Breathing has been worse but yeah. Here I am back again.
Got very drowsy and wasn't responding to partner so he went and told reception and they put the big alarm on.
Woke up to people checking on me. Got taken for obs, had some more inhaler and a Covid test just in case although she said that looked negative just needs to 'cook' a bit more just in case. But hasn't come back and made me mask up so looks like still don't have Covid.
Not just tired of dealing with this I am physically drowsy and completely exhausted. Current average wait to get seen is 5 hours. We got into waiting room from ambulance about 2 hours ago. So 3 hours to go unless I get worse.
Don't want to wait three hours but don't want to get worse either. The NHS needs help it's overwhelmed and apparently this is fairly normal these days.
So the scary bit was while I was half there / half not but not having a non epileptic seizure (felt different and my hearing was in and out) and family was on phone to ambulance the operator told them to pull me flat and do mouth to mouth breaths and a few compressions at which point managed to drag myself awake a tiny bit and squeeze a hand. Because my breathing was barely there and I seemed unconscious. Don't blame ambulance operator they do what screen suggests but yeah. May have acquired some more trauma.
And it made me flash back to my first non epileptic seizure when noone knew what was going on and I had people run around and defibrillator pads and being stabbed with IVs and all that.
And also was wonderinh if it was going to go silent and pitch black and that would be it and I would be dead. And yeah feelings, feelings I don't have space to deal with right now.
I really need to talk to my old therapist when the breathing is under control. I am keeping it together mentally but barely. If I wasn't so tired I would be trying to self harm just to express it all.
Last edited by long road : 17-08-2023 at 01:40 AM.
no good words that sounds so so scary. hope you are able to get the care you need and get home as soon as possible. trying to contact your old therapist human sounds like a really good idea.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
I got discharged from A&E at quarter to 1 in the morning. And managed like four and a half hours sleep in my own bed (took a while to settle having got home). Just woke up, would love some more sleep but not sure it's going to happen.
I want to get referral to old therapist but it seems best to try and get breathing under control first.
I'm glad that at the very least you got to sleep in your own bed. Hopefully the appointments today go well, and you begin to get some relief - it all sounds so incredibly overwhelming.
Keep looking after yourself, I know it must be so difficult.
'It's an impossible choice ... I'll just have to hope that when I flip the coin it somehow explodes and kills me.'
"You're not scared of climbing mountains. You're scared that you can't make them move."
Yeah both at same time is too much to handle. Also its hard to do lots of talk therapy when you are really short of breath. Want to try and get out of acute flare and sort of under control first.
Summary of medical adventures today:
Saw Nurse Practioner for the fourth time in a week at 11:40 am and she sent me back to SDEC unit at hospital. Had a load more tests at hospital another ECG, more bloods and another chest x-ray. Plus regular obs.
Saw an advanced clinical practioner(an allied health professional in same band as a mid level doctor) while in SDEC, she really took the time to look at the whole picture. Also saw an AMU consultant.
Consultant didn't have all the answers, as she can't work out exactly what is causing asthma to flare so I still need to see respiratory specialists, but have an extra referral to respiratory physiotherapy to help me manage my symptoms. Meds have been sorted, got some anti stomach acid ones plus staying on steroids and this time coming off them very slowly will be reducing dose by xmg a week for next 5 weeks at which point I hopefully get to come off entirely.
And wait and see respiratory outpatients to see if we can pinpoint exact cause and whether we need to change around my regular medication.
Bqck home again and feeling more listened to, in control and have a bit more confidence I can stay out of hospital this time as we have a proper treatment plan and long term referrals, rather than just have some steroids and come back if it's worse. And they have done a proper discharge summary letter and sent it to my GP. So it's all recorded properly and should be able to get repeat prescriptions as necessary.
Trying to nap but steroids are keeping me wired. Hopefully as I very slowly step down steroids I will slowly get more sleep. Think I have averaged 6 hours sleep a night for the last 10 days with no naps possible. Some nights as little as 4 hours.
Thankfully all professionals agree don't to go up to the Ymg dose of steroids which make me hallucinate. But steroids are definitely having a mental health impact.
I feel like when I get out of acute phase my feelings are going to hit like a tonne of bricks.
Last edited by long road : 17-08-2023 at 06:10 PM.
Reason: Trying to make it make more sense
Can't sleep because lungs won't quite settle enough. But not ill enough that I have to seek extra help again for now. I am more tired than it feels possible to be and all my limbs are heavy.
But got to keep breathing, it's kind of essential after all. I am however finding it very hard to relax. Which probably doesn't help the sleep thing
no good words but we will likely be up a bit still. so if you want to picture us virtually sitting with you until some more uk folks get up, feel free.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
