3 hospital visits in 8 days.

2:30pm

Wednesday 8th may 2019

I’ve been taken to hospital 3 times in 8 days? Yep you read that right.

Quite frankly I’m not sure how I’m awake so apologies if I don’t make sense sometimes.

Yesterday (tuesday) I was taken to hospital by ambulance for the 3rd time in 8 days. All because of tic fits (tic attacks), on the 30th April I wrote I was having 2 a day. Now its more, I had 5 on Sunday (the 5th may) and 3 Monday. Yesterday I had only 1 but it’s not as great as it sounds because it lasted for 12 HOURS. 8am til 8:30pm. It’s the worst tic fit I’ve had to date and I’ve been having them since April 2016.

It started at my dad’s where I was discharged the night before (Monday I was taken to hospital too) and the paramedics got to us at 12 noon. They gave me gas and air and I downed a full bottle. (Impressive I know right) It made no difference. They again werent allowed to give me midazolam or diazepam because I was conscious. So around 4pm I stopped for a couple of seconds (after peeing all over my dad’s spare bed) so they tried to get me into the ambulance, about 4 steps down my dad’s 20 ish front steps I got the deck and started fitting again. So they had to get a second crew (again) to get me down the steps and into the ambulance, not an easy task as I was convulsing.

Got to the hospital, spent 5 hours in the corridor convulsing. My mum came to be with me after she finished work. No meds were given to help with pain or to help stop it. (I repeatedly asked for pain meds) Around 10pm they decided because my tic fit had stopped for now I should go home. But come back in if it starts again. No offence but I think I’d rather stay overnight instead of using a fourth ambulance. Surely that makes more sense right? Apparently not according to them.

So we’re home again. Fed up and in pain. Told to speak to my neurologist about an emergency appointment and to come back if I start fitting again. Although I’m not sure what for as they did nothing but put me in the corridor for half a dozen hours. (Well 5 but close enough) Really fed up with tourettes at the moment.

But we’ll keep fighting and keep moving forward. Actually scrap that, we’re going to sit here and cry but we’ll survive and for now that’s enough.

With love through tears

Alanis x

Another day another hospital visit

So I’ve just got back from my mum’s stayed at her overnight because she picked me up from the hospital early this morning (3am).

I was feeling like I was breathing in acid last night (all burning down my throat and into my lungs when breathing) so I rang my on site support worker and she came up to help with the call to 111 the non emergency NHS advice number. We rang then and they said they’d get a nurse to ring me back. The nurse rang back saying they could book me an appointment for 11pm (was around 9 at this point) but I couldn’t get there. So I had to wait for another nurse to ring me back.

While waiting for the second nurse to call me back I fell off my sofa and started having a tic fit on this floor. Went down like a sack of  shit and hit the deck. My support worker was still there and she rang an ambulance but she couldn’t leave me like that and I was feeling unwell anyway.

The ambulance came quite quickly and was there within 15 mins of it starting. They were with me for 3 1/2 hours and eventually when it wasn’t stopping, I was in a ton of pain and still convulsing they decided I needed to go to the hospital so one of them went to request another crew to get me down the stairs safely and the other one put a cannula into my hand (not an easy task as I have shit veins and was flipping around on the floor like a boneless fish.) I was very impressed as he did it on the first attempt. Although they weren’t allowed to give me any pain meds because of my breathing issues when I was having paralysis tics (I don’t breathe when I’m having them) and they couldn’t give me any diazepam to make it stop because I was still responsive. So really it was pointless. Really frustrating (for them and me), they were lovely and I tried to keep smiling or at least not crying but in the end I did end up in tears. I was in agony and I just couldn’t stop.

They were so helpful and I appreciated that they were honest that they’d never seen one before and didn’t know what to do.

They had to strap me in really tight to the evacuation chair to get my out of my flat and into the ambulance, this was very triggering but I knew it was necessary and I just wanted it to be over.

So we were in the ambulance in the way to hospital and I kept just saying please tell me they’ll do something to help, I can’t do this anymore.

Got to the hospital was at the ambulance reception for about 15 minutes , they were debating about whether to send me to resusitation or not because of how high my heart rate had been for so long. They couldn’t get a reading on my blood pressure but I was breaking blood vessels it was that high.  In the end I didn’t end up in resus I ended up in a corridor of a&e along with around 20 other people in a row on beds. Still convulsing.

I was transferred onto the hospital bed off the ambulance bed. I felt quite vulnerable and alone. And of course very pained and exhausted.

About an hour later my body’s convulsing slow and eventually stopped. A single tear escaped down my cheek It was done, finally. I couldn’t even lift my head as I didn’t have the energy. (I had been convulsing for 4 1/2 hours. Anyone would be exhausted after that) I laid there for about 15 minutes paralyzed with fatigue, when I had finally recovered enough to lift my head I called my mum. I used Facebook call as I had no phone service. She was asleep but got dressed and left for the hospital.

I discharged myself as I knew I’d just be there for a few more hours have nothing done and be let home. So I thought I’d skip a few hours of pointless waiting. Plus I was being very noisy and people were staring at me.

They took my cannula out and I went to my mum’s for the night.

I’ve just really had enough of these fits, the past few weeks I’ve been having on average 2 a day. And every couple of days I’ll have a severe one. I need something to at least reduce them. Going to speak to my doctor tomorrow about a meds increase of something, anything that can be done to help.

Also going to speak to my care coordinator in the morning about an emergency alarm like a pendant alarm so that I can get help when I need it.

Still no six pack from all the crunches I do when I’m fitting. I really do deserve one.