Home Again (post 9)

I was in ICU again for a few days, whenever Emma was on shift she was by my side. She really helped me get the panic attacks under control. As my sleep was rubbish she would put music on creating a lovely atmosphere on the ward . The nurses are so lovely and they were always singing.

I freaked out one of the physio’s, Charlie once when they tried to get me on a chair by laying me flat and sliding me over. The chair wasn’t playing ball and I couldn’t bear being flat as my chest felt so heavy and I couldn’t breathe. I had a full on meltdown and pulled my nasal tube out in the process. The nurse I had at the time was really helpful and calmed me down. She got me to concentrate on something while breathing through my nose. I found saying what I could see did it for me. I would look for say a number 2 and say 2 over and over again. I looked and sounded stupid but it really worked.

I was on the icu ward for a few days, and to be honest I felt fine I spent my days watching the Real housewives of New Jersey This Morning and Loose Women. I started watching The Crown too. That helped with getting some sort of rest.

I think I was in HDU longer than ICU this time. I literally just did as I was told. It was mostly the members of staff arranging me the right support for when I got home. It’s where they sorted out my referrals to UCL for my arm. I had my own room here too which was great as I could have a commode in my room and had some sort of dignity back.

I also got the bladder meds that stopped me from peeing myself whenever I needed to go.

One night I had my window open a little bit and I could hear the labour ward. There was a lady screaming while listening to Tiffany’s I think we’re alone now. It was quite entertaining but obviously not for her!! Then one night the fire alarms went off and a nurse came in to sit with me and got me dressed just in case we needed to evacuate. It turned out to be a false alarm but it passed the time.

I would FaceTime everyone, then eventually I was allowed home again and my whole family came to get me. Emma came to see me off too. Martin as usual bought in Krispy Kreme’s for the nurses.

I was still really hallucinating freaking Martin out, we figured out it was the morphine and the bladder drugs that I had been given also had hallucinations as a side effect. Martin decided that we could cope without the bladder pills he said he would rather clean up wee than watch me talking to people who weren’t there. Then the morphine I could only have if I really needed it, to be honest I’m happy to not have the morphine anyway. (I have added the video of me hallucinating at the bottom of the page).

The catheter nurse came out soon after I was discharged and gave me pads and some tips. I’m now happy to report I’m fully continent unless I bend over too much or have a coughing fit!! A good tip I won’t forget is to hold your wee. It strengthens your pelvic floor muscles. That and the squeezing method.

I had a really good physio called ifeddy and I even got my lovely carer Bernie back! Over the weeks I really started to improve. Kat my respiratory nurse put me on 24 hour oxygen and a bipap machine at night. Then a couple of months in the oxygen was only at night, and as and when I needed it. I had what looked like a little air con unit plugged in the hallway with bright green tubing that stretched the whole length of downstairs. I have bottles too for when I go out and I look like scuba Steve from big daddy. Its now been a few months I only have oxygen as and when I need it, and the bipap machine at night. The unit has gone now too thank god, I honestly thought and felt like we were about to take off! I’m still scuba Steve with the bottles.

Unfortunately we’ve been told now that we will have to start paying towards my care and although I still need it, its had to stop, with both of us unable to work it’s a big chunk of money each month. I miss Bernie loads!

I have Martin and if he’s busy, Izzy is great! I do feel guilty asking them for help. Martin has to wash me, get me dressed and cooks and cuts up my food for me too. He literally does everything for me now, on top of all of the housework. Then any appointments at the doctors or hospital he has to drive me then push me around in the wheelchair.

He’s the best husband ever.

We’re saving for a mobility scooter. I tried one out in Asda the other day and Martin is threatening to get me a crash helmet as I was a bit of a nutter in it. I very nearly took someone out!!

The worst bit about being disabled now is not being treated like an independent human being.

Both Izzy and Martin have had questions for me directed at them, including Martin being asked if I can wear a mask. I mean I hadn’t put my sunflower lanyard on yet but I’m not mute! I can speak for myself.

Disabled doesn’t mean stupid or unable to speak for yourself. People shouldn’t just assume. I’m happy to say this doesn’t happen all the time but it does happen a bit too often. I get full on staring too, if I walk into the coop say, I’ve had people look me up and down mouth open, like I can’t see them. Luckily I just laugh at them now, that’s on them not me.

Anyway, I think that’s it for what happened…

If you have any questions please ask me. I’m happy to answer anything.

I’m going to carry on with my blog but more as like a journal type thing, my experiences going forward.

Thank you so so much for reading!

Bex 💕🌈

(Ps. Hopefully Emma won't mind me using one of her pics I have stolen off twitter!)