When we received the letter it stated that he would have to be on his own(!). Obviously, with his anxiety issues, agoraphobia, seizures and panic attacks, I was not happy about this. Neither was hubby! And after several emails and phone calls, we eventually got to speak to someone at the sleep clinic, which was at papworth hospital.
They said they had not been made aware of any of hubby’s problems or even that he had a carer. After some discussion of what really happens to hubby, they agreed to put us into a side room off the ward and brought in a fold up bed so that I could stay with him.
I don’t know about you guys but I hate hospitals. So, as you can imagine, I was anxious about having to spend a night in one. But I am hubby’s carer and there is no one else able to go with him or care for him. So it’s left to me and I have to put hubby 1st, which is sometimes hard to do. Seriously though, I really do hate going to hospitals. It’s bad enough when hubby has to go to hospital for various different appointments, but I’ve been to hospital a few times for my own health problems since I was a kid.
Ok rant over :-)
28th January was the date of the sleep clinic and I think I was more anxious than hubby. When we got to the hospital there was nowhere to park. It was so bloody busy and typical we had left the wheelchair at home (hubby hates it). We eventually found a temporary parking space and made our way to the main reception and checked in. We asked the receptionist about parking nearer the ward and she said it was because of the time of day.
We drove over to the ward … 3 disabled space, all taken … then over to the nearest car park … nothing! We eventually found a “parking space” (basically a gap between a parked car and a barrier) barely wide enough for the car (never mind opening the doors) but was fairly close to where we needed to go. Hubby was gasping for breath and nearly collapsed when we got to the ward desk and we had to check in again. While we were waiting I could see that hubby was getting anxious and needed to sit down. The receptionist noticed this too and got us to go to the day room and wait in there for someone to show us to our room. It’s very rare for other people to notice when hubby is having a spell and it’s nice when people do. It makes my job a bit easier! :-)
So, we waited in the day room for what seemed like forever - especially when hubby started to have a panic attack! I did what I normally do and told him to focus on me.
Eventually a hospital porter came and showed us to our room, which to my horror looked just like a normal hospital room and there was only one single bed in there. The room was tiny and the bedding on hubby’s bed was really not fit for purpose. Oh well, that’s the NHS for you. That said, at least we HAVE an NHS, not like any other country in the world … but for how long.
Anyway, we settled ourselves in and had some hospital food ……….. I’m not going to say another word about the food, but those of you that have had the pleasure of hospital food will understand what I’m not saying … lol
Before we knew it, it was time for hubby to be fitted with some fancy headgear. I’m glad it wasn’t me that had to wear it and sleep in it. I’ve got to admit, I did find hubby’s new headgear very funny - so I had to take a picture of it and tweet it. The face hubby is pulling in the picture is just so funny and says it all.
One of the people that was attaching hubby’s headgear said there was a spare bed in a different part of the hospital if I wanted it. I was puzzled by this because the whole point of me staying with hubby is because I’m his carer and he needs me with him. Anyway I explained to them that me being somewhere else would not make sense at all and defeat the reason I was there………………
This left me feeling somewhat angry and puzzled, but maybe they didn’t realize that just because I’m his wife surely I can’t also be his carer? But they were made aware of this and the other nurses seemed to know … oh well.
Time For Bed Said Zebedee
Bed time and hubby was all tucked in, video camera running, breathing flow meter was metering and brain scanning thingy was scanning. Not being tired, hubby got out his portable DVD player while I lay down to try and sleep … but annoyingly it chose that exact moment to stop working. He couldn’t read his books on his phone because it would interfere with the equipment, so he had no choice but to go to bed early (it was about midnight). Strangely hubby slept well that night, better than he has in ages. And he fell asleep in 8 minutes according to the computer. Me on the other hand, I did not. I kept waking up to check on hubby. I had to sleep in what they call a cot (basically a fold up bed), this could have been one of the reasons I didn’t sleep at all. I’m so used to being next to hubby and can usually sense if he’s having some kind of spell.
The Day After The Night Before
Both me and hubby woke up very early the next morning and I had to get a nurse to give us some more water as we were both really dehydrated. I asked if they could get someone to remove hubby’s headgear so he could shower, but the sleep clinic team/doctors wanted hubby to spend the day doing nap tests. I just wanted to eat and come home(!), but obviously I also had to stay…………bugger! :-)
For whatever reason the women that set up the 1st nap test ordered me out of the room. She didn’t even give me a chance to explain that I was hubby’s carer. So I anxiously sat in the day room and went on Twitter and Facebook and had a bit of a chat with some people. Before I knew it hubby was standing next to me … and guess what? Yep, he’d had a seizure while he was having his nap.
This was the point of me being there in case this sort of thing happened!! Grrrrr
But even though it wasn’t my fault that I had to leave hubby alone, I still felt guilty and could only imagined how scared hubby would have felt :-(
Anyway, I’m not going to bore you with what happened with the rest of the nap tests, except that hubby did have a few more seizures.
To Dream A Dream
As much as I hated being at the sleep clinic/hospital, it was worthwhile. Hubby seemed to have stumped the doctor and he will be invited back for further study. He appears to have some symptoms of narcolepsy, but some that completely contradict a diagnosis of narcolepsy.
Normally he suffers from severe insomnia (usually he’s up to 3am, 4am, sometimes he will just stay up all night), but at the clinic he went to bed at around midnight and fell asleep in 8 minutes. He slept without waking for 6½ hrs ... but never once reached REM/dream sleep (the human brain usually runs on a 40 minute-ish sleep cycle - light sleep, deep sleep, dream sleep and round again every 40 minutes or so).
During the nap tests throughout the day, Hubby had to lie down and try to relax/fall asleep for 20 minutes or so. Normally people don't reach dream/REM sleep while napping (day dreams don't count). But, just to be different, Hubby jumped straight into dream sleep all 4 times - without even realising he was asleep!!!
Apparently this is not right :-)
He also shows signs of cataplexy, which would explain some of his falls. Cataplexy is the sudden loss of muscle tone in arms and/or legs that causes falling. It can also cause non-epileptic seizures, which as you all know he’s been getting for a while. It can also cause loss of muscle tone in the face causing difficulty with speech. Cataplexy happens in 70% of all cases of narcolepsy and is extremely rare without it, although it can happen when people come off of/go onto high doses of antidepressants.
Sooooo, ….. the doctor was very interested and wants to do some follow ups. Trust me to be married to someone that has strange sleep patterns.
Take care of each other,