It's been a long time but things are getting bad - Page 19

long road · 05-09-2023, 06:49 AM

So I am in hospital with my asthma. It has been challenging mentally. I haven't broken down to hard but obviously it's a trauma trigger. And I have been having a load of non epileptic seizures which is probably how my body is processing the stress.

Really hoping I can get referral back to my psychologist sorted soon.

Good thing about hospital admission is I should get to see the respiratory specialists and get a plan in place to hopefully get this flare under control. When they said they wanted to admit me I wa sanxiois about coming in. But I was also anxious about being at home and potentially needing to ring more ambulances etc. If I get a new treatment plan out of this the distress of being on hospital will have been worth it.

long road · 05-09-2023, 07:30 PM

Being discharged. Had a load of tests and met a really awesome respiratory physio. She talked through a load of bits with me and has given me some bits to do now will call me a week on Wednesday and then see me outpatients.

Haven't got a date for respiratory nurse appointment but have been promised it will be before I complete taper of steroids. And that we will discuss new meds to try for long term management. And can also try and get physio to chase nurses if necessary.

Alas for my mental health I am back on the higher dose of steroids that I started on four weeks ago. So much mania and little sleep in my near future.

But hopefully better asthma control in the long term.

Going to ring GP tomorrow to check in.

Auror. · 05-09-2023, 07:59 PM

thinking of you. glad you have some better support in place. how are you feeling about all of the plans? are you okay with them?

long road · 05-09-2023, 08:29 PM

It was really tough being in hospital again. Had a lot of non epileptic seizures fell out of bed multiple times and a couple of times before they got me crash mats to land on. I am covered in bruises. Mentally I held it together and didn't start rocking, or crying but I almost broke into tears a few times. I coped better becausee partner handed over to nurses how to deal with seizures and I advocated for myself. But I am sure emotional load is going to hit like a tonne of bricks soon.

So happy to be home and have a plan. But it was rough. I wish I had exact appointments rather than promise to call at some point on Wednesday and see me in clinic in a few weeks. But the treatment ideas seem sound. Nervous about affect of steroids on mental health but know my lungs need them.

tamobhuuta · 06-09-2023, 10:07 AM

Just dropping by with hugs.

long road · 06-09-2023, 12:17 PM

Thanks for the hugs. Much appreciated.

Said in general chat that I have an appointment booked with Practise Nurse and my named GP Dr A on Friday afternoon so we can check things are still stable before the weekend. And I think I am going to mention the mental health side of things in that appointment and ask Dr A if he can do the referral to my neuropsychologist then, rather than waiting for routine appointment.

I coped with this hospitlal stay ok and it was a lot less traumatic than last time but it was pretty hard going. And there is definitely emotion there that I can't access right now because brain has locked it down to try and keep me safe. Like my unconscious is in survival mode or something and doesn't think I can handle it right now. So would be really good if I could talk to my psychologist before mind decides to dump that emotion out and I hit the inevitable overwhelmed/ distressed point.

Really hoping asthma behaves in the short term before Fridays appointment. It's okiah now, definitely well enough to be at home but also definitely still ill. Lungs feel fragile like the littlest things can set them off. Nurse has said that if at any point it feels worse before Friday but not ambulance territory to call the surgery and she will get me an appointment to come see her in person that morning /afternoon.

I have a good Team at GP surgery and it looks like I am going to have a good team at hospital in the respiratory outpatients. I want to be happy about finally having a plan beyond just mangin the acute phase and waiting to be seen. But I am still finding myself on edge about if I am going to need to call another ambulance or escalate in any way. Still a load of anxiety. And a bit afraid to hope too hard that things will get solved when asthma is a chronic condition and I haven't met my whole treatment team yet or found out if I qualify for biologics which are the new line of asthma treatments.

one_step_closer · 06-09-2023, 03:22 PM

Please do mention the MH side of things on Friday, you deserve support with all the things that are going on right now. I know it's so much and I'm sorry you're still struggling. I can understand that you're still anxious and not wanting to put too much hope in the things that are planned for you. I don't know if there is a way not to feel these things when this has been going on for so long. Sorry I have no good advice but keep posting if it helps to get things out and be as kind to yourself as you can.

long road · 06-09-2023, 03:53 PM

Thanks Lindsay writing it down and knowing people have read it and are thinking of me helps a little bit. Also find posting here and 'talking' to you guys sometimes helps me to open up to my partner when I am struggling, as my thoughts are more organised.

Been manic, restless and anxious since just before lunch. Channeled some of the pseudo energy into writing lists of what I want to talk about in various upcoming appointments ( neuro rehab OT phonecall tomorrow, nurse/GP Friday and respiratory physio phonecall next Wednesday). Was hoping writing it out and organising my racing thoughts might help calm me down but it doesn't seem to have helped much. Does mean if my brain is gone in any of those appointments I should be able to remember everything I want to ask though as have a checklist.

Going to try listening to music and resting now. But not holding out much help I can stick to it.

long road · 06-09-2023, 05:05 PM

Frustrated. Lay down (propped up on 3 pillows) to listen to music and chill but got the opposite, I did sort of relax for a little bit but after 45 minutes started feeling short of breath and quite tense. Breathing pattern seems to have gotten out of whack and possibly have been unconsciously hyperventilating as have some of the symptoms of that. Heart is going fast along with being short of breath. Taken some inhaler and it doesn't feel like a full on attack but I definitely feel worse than this morning and when I left hospital.

Have phoned GP surgery asked to speak to Nurse but she was just leaving so has said to receptionist to ask duty doctor to call me. So waiting for that call and hoping GP doesn't say go back to hospital and especially not to sit in A&E.

long road · 06-09-2023, 05:40 PM

Spoken to GP. Have been told to take my inhaler more. Repeat peak flow and when she calls back on 10 minutes or so we will form a plan. She is borderline on sending me back up to the hospital.

I don't want to go but I will if I have to.

Auror. · 06-09-2023, 05:52 PM

fingers crossed you can stay home but proud of you for being willing to go back if you have to

long road · 06-09-2023, 06:49 PM

Narrowly avoided hospital. Have some very strict and clear guidelines of when I have to call 999. And also advice that if I am worried in any way it's perfectly ok to just call an ambulance or got to A&E to get assessed because they would rather see me and me not actually need them than me not call and end up getting worse to the point my attack is life threatening and possibly dying. She was quite blunt about that.

I am just fed up of hospitals and how much worse they are making FND. So trying to avoid if I can do so safely. A&E is super stressful and an exhausting place to be. And it will do my FND the opposite of good to be there. Will go / call 999 if any of her warning signs are met or I feel I am having a full on attack though. Not going to mess around with possibility of death cos right now I may be stressed as fuck but I don't actually want to die.

long road · 06-09-2023, 10:05 PM

So I had another attack. Called 999, had two nebulisers with paramedics at home and was still wheezy. So paramedics brought me in to hospital. Managed to avoid A&E though and got brought straight to AMU and the medical triage unit. So at least it's more chill as on a ward.

Auror. · 07-09-2023, 02:48 AM

we hope they are nice and can help so you can get home soon

one_step_closer · 07-09-2023, 10:03 AM

Hope you get all the help you need and get home soon. <3

long road · 07-09-2023, 04:24 PM

Been discharged again just got home. But this time I have a follow up appointment with consultant tomorrow morning at 11am to check me over before the weekend and review. Because asthma keeps stabilising and then flaring again off and on.

one_step_closer · 07-09-2023, 06:56 PM

Sounds so exhausting and distressing, Jen. I hope you have a peaceful evening and night and the appointment tomorrow is helpful.

long road · 07-09-2023, 08:55 PM

I think the reason they keep discharging me so early each time is because my FND is massively triggered by being in hospital and is much better controlled at home. Like usually with asthma that had been this up and down they would say stay in a few more days see how it goes but as soon as I am stable for 12 hours or so they are letting me home to manage fall risk / distress level. Have had many many non epileptic seizures during admissions looking at roughly 4 on Monday, 16 on Tuesday and 3 Wednesday night and 10 today at hospital.Compared with 0-2 during periods at home on Sunday and on Tuesday night into Wednesday evening and 0 this evening since I got home.

So they are trying their best to treat me outside of hospital as long as it is safe for me. Have consultant outpatient appointment tomorrow morning. Then GP and nurses combined appointment tomorrow afternoon. So being regularly reviewed.

Have to monitor asthma and have clear guidelines on what constitutes an asthma attack and when I should call 999 again if things worsen before tomorrow's appointment.

Seizures have resulted in me ending up falling out of bed or bashing into side railswhile in hospital as well as falling while in bathroom on ward this morning and hitting my head. So far seem to have avoided serious injury but am covered in bruises, cuts and grazes. Also am under a 72 hour monitor for head injury symptoms thing where if I get any of certain symptoms we have to go to A&E and get a CT scan.

Also had some urinary issues to monitor that are FND related.

Happier at home form a mental / FND perspective but have low tolerance for seeking extra help.

Going to ask in Nurse/GP appointment about referral back to my therapist. Because with how asthma is I really need some extra strategies for dealing with FND when in a triggering environment such as hospital, because right now there are times I need to be admitted to manage my breathing.

Managed to sleep for three hours or so this evening which has helped. Just going to have a light supper and do my evening meds in next hour or so. Then try and sleep some more if my body lets me. Got maybe 10 minutes sleep total last night and then an hour or two after lunch before I was discharged.

Auror. · 07-09-2023, 09:02 PM

hoping you can get some rest and definitely that you are able to ask about therapist human. sounds much needed.

long road · 07-09-2023, 10:52 PM

I have been finding this all very distressing and scary but my emotions have been shut down. I am aware I am scared but don't really feel it. Just don't feel safe. Been finding very hard to engage with emotion think it's mostly going into FND symptoms/ I am dissociating from it / I am repressing it for now during crisis point and once finally get asthma under control I may hit meltdown.

Really hope can get referral. And I rally hope my therapist can review me soon.