A lot has gone on this week. It seems I really am improving. After going to the hospital for a scan last week, on Monday I went into the living room and watched Penguins: A Spy in the Huddle on BBC 1 (Penguins! Robotic Penguins with spy cameras! David Tennant narrating!) and was in there for a couple of hours. On Wednesday I watched a documentary in bed on my computer.
Wednesday afternoon Johan and I were discussing him going into Newcastle to pick up a few items the next day if the weather improved, as it was too icy to attempt it right then but he wanted to go out. A few hours later, Johan was having real trouble with his balance, and he felt quite weak. I demanded he get on my bed with me until it passed and we watched the documentary together. He was going to change my pad but when he tried to fetch one and the wipes he fell, lots. I made him rest a bit, and then he wanted a drink so tried to get to the kitchen to get one. He ended up crawling as his legs wouldn’t hold him but then he couldn’t get any of the bottles of pop so he couldn’t have one. It was about 8pm and I realised he wouldn’t be able to go open the communal door so we cancelled the carer.
A bit later he decided to try and go get something else. This time he basically fell off the bed and couldn’t even crawl. We realised that it was getting serious so after getting back on the bed (which was really difficult for him but he just about managed it) I asked Twitter what to do, as although I had a care call alarm using it means I become non-verbal (it’s stupidly loud) and I can’t use the phone as I can’t hear or speak properly on it. Twitter agreed he needed to be seen to urgently (he was also really dizzy and starting to become rather out of it by this point) and I was able to text 999 for an ambulance, which was interesting. They asked the same questions as they would over the phone, and it finished when the ambulance arrived.
The ambulance people (I get confuzzled between paramedic and technician so will call them that) were sensible and when we didn’t answer our buzzer to open the communal door (which I mentioned by text we’d not be able to do) they tried the other ones until someone opened it. Luckily our door was unlocked so they could get in. They did some basic tests, which were normal, then asked if Johan wanted to go to hospital. At this point I was really worried so said it would be best. Johan didn’t argue (he’s terrified of hospitals so I knew he really was ill then). Because of the icy conditions they weren’t able to carry him out (or use a wheelchair as the ramp was just ice) but they said they’d support him with walking.
Before leaving one of the ambulance men rang the emergency duty social worker to let them know Johan was going into hospital, and I’d need some help that night before I could sleep, things like a pad change (pretty urgent at that point), medication (which Johan wasn’t well enough to give me and was due after they left anyway), a drink as my hydrant was low, and stuff like that. They promised to contact someone and send someone out. The ambulance man was good and told them I’d not be able to phone, but gave them my mobile number so they could text.
They took Johan to hospital, leaving my flat door unlocked so whoever came would be able to get in, just after 10pm. I was a bit scared but more worried about Johan at this point. Johan didn’t have his phone as I forgot to make sure he had it and he was too out of it to remember. My sister Meggy was in A+E already when he arrived though (she has gallstones at the moment) and let me know on Facebook she’d seen him come in so I knew he was there safely. At around 1am I got a phonecall on my mobile, which I couldn’t reach to respond to,and the noise and anxiety it caused meant I could no longer speak. I didn’t get any text messages as promised.
I hunted out the text number for the emergency duty team (which took a long time as the website is really difficult to navigate now) and sent them a text message explaining what had happened, and that I still needed help. I got no response to that, either. By 3am I knew that Johan had been admitted as it was well over 4 hours since he’d gone into A+E, and it was what I was expecting anyway.
Around 4am I attempted to press the care call button as I was getting desperate (having had no medication since about 6.30pm, I had nothing to drink and a really dry mouth, my pad was so saturated I’d taken it off, and having wet the mat on the bed as my bladder had spasmed and I didn’t know I was peeing until I felt it going down my leg). Unfortunately I was doing really badly and no matter how hard I tried, I didn’t have the strength to push it. A bit useless then.
I put a call out on Twitter for some help as I wasn’t coping. Luckily Penni was feeling very brave and phoned the emergency duty team again. This time they said they’d ask the district nurses to come around and help me. I got a phone call on the landline this time (which is in the living room, and I can’t use anyway) but nothing else. Indigo Jo was now awake and offered to ring up again, which he did. He chased them up, they claimed they’d visited earlier but couldn’t get in the communal door (and they certainly hadn’t tried asking one of the other flats, as they’d rang no bells as I can hear 3 of 4 clearly and the fourth when it’s quiet). He kept chasing them and eventually he got told I was next to be visited.
Eventually the district nurses arrived. They rang one of the other flats to be let in after getting no response from my bell. When they got there they were apologetic that they’d taken so long. They were surprised I’d been waiting all night, as they only got the referral at about 5am (when Penni had phoned). They changed my pad, got me a drink, gave me my medication, offered me food and promised I’d get another visit soon and they’d arrange respite. They took my keys as well so they could get in easily. Indigo Jo offered to phone the hospital so Johan would know I was okay now and that I was going to go into a care home, which made me feel better as I knew he’d be worried, and meant I got an update on how he was doing.
I managed to nap a bit, and my favourite carer arrived as normal at 10am. She’d asked one of the other flats to let her in as she knew something was up when we didn’t respond to the bell. I explained a little what had been going on (I was typing on my tablet and as it’s broken it kept stopping, which was annoying) and she was worried. I wasn’t feeling up to anything so she went and sorted things in the kitchen, wrote in the book and after checking I was okay, left again.
After more of a nap (I was tired), the district nurses arrived again, with the duty social worker. They sorted out my medication and things, and then offered me a place in a care home around the corner from where I lived. After a quick Google to check it wasn’t run by the same people as the first care home I went to (it wasn’t), I agreed. They sorted out all my stuff, and I got into my wheelchair with a bit of help and after a few struggles trying to get it to tilt was settled in it. One of the nurses took my stuff up to the care home in their car, and the social worker and the other nurse took me in my wheelchair up to the care home.
The social worker was pushing me, and struggled a lot with the hill on the way (it’s pretty steep, but Johan would have managed it the day before). When we got to the care home things got sorted. The room I have had a normal single bed in it, but when I mentioned that I fall out of them and needed rails they said they’d replace it with a profiling (hospital style) bed. While they were sorting the bed out I got a little tour of the care home, and spoke to the social worker about things for a bit. They managed fine with me typing on my tablet, and were keen to make sure I was okay. The social worker left after a bit (he was nice) and my bed was ready so they hoisted me in. It was weird being hoisted and as I was having a bad day anyway and had been in my chair too long I started having a jerking attack, which one of the carers thought was a fit (it looks like one, but I had head control so I shook my head to say it wasn’t).
Once I was in bed they did everything they could to make me comfortable and make sure I was okay. I rested for a bit (and my speech came back), then sorted out asking someone to get stuff to Johan and fetch a couple of items I needed but had forgotten. Louise was able to help, and she came and sorted everything for me and Johan. She was brilliant and it meant Johan had his phone again so I could talk to him and see how he was. By this point he was feeling okay but his legs still didn’t work. He’d had a lumber puncture and was to have an MRI scan.
Things have been as okay as possible since. The care home staff are brilliant- they really want to do everything they can to make me comfortable, they ask me closed questions, and have made it really clear that if they can help in any way, they want to. The one thing they hadn’t told me was that the bed had an air flow pressure relieving mattress, where different parts of it inflate and deflate to move you slightly to prevent pressure sores. The first time it moved I was wondering what on earth it was, but I worked it out. It’s a little noisy but I can cope during the day and wear ear plugs at night when I want to sleep, and it is comfortable and for the first time in months I’ve not had sore hips from being on my side.
Johan is doing okay. He hated being stuck in bed, so asked about getting a wheelchair. They didn’t have any self propelling ones, so as my sister Becca had agreed to help me today she took my old, slightly broken up one for him to use. He’s glad to have the independence back, as he hated not being able to go to the toilet or anything. He had his MRI and all the results he’s had back so far, including the MRI, are normal so they’ve no idea what’s wrong. His legs are incredibly weak- he can barely move them and they won’t hold him up at all, but all feeling and stuff is normal. I get the same thing but that’s due to my ME, and he’s not got anything like that. It looks like he’ll be referred to a specialist neurologist which will probably be in the RVI in Newcastle. We don’t know how long he’ll be in hospital, but if his legs don’t improve soon we’ll have to make some changes at home, will need more care for both of us and things. It’ll be okay though whatever happens, though we both are praying he’ll be able to walk again soon.
Becca was brilliant. She’s going to spend a bit of time at our flat, so she can help us out for a little bit as it’s close to both the care home and the hospital. She brought my post (nothing really important) and as I had a really good day (the best since I first relapsed in November) she took me to visit Johan in hospital. That was brilliant for both of us, and we even managed to visit the restaurant For a beginner, she’s pretty good at managing my chair as well, especially as it’s really long and heavy.
We have learnt a few things from this. We’re going to try and sort stuff out while I’m in respite, as that’s easiest. We definitely need a key safe, and a better way of dealing with an emergency. Care home staff can be good. Hospital food isn’t that bad. Johan can tolerate needles if he has no choice. The big thing for me is how helpless I felt being left overnight- if I’d not been able to communicate with my tablet I dread to think what would have happened, as being non-verbal or unable to use the phone meant they didn’t help me as early as they should have, and I literally couldn’t do anything else to help myself. If I don’t have help, I go without a drink, a pad change, medication as I can’t do it (believe me, I tried). That’s what severe ME can be like.
We’ve had loads of support from friends on both Twitter and Facebook, and I’ve not been able to respond to most individually yet but we’re both really grateful. Loads of offers of help and if we’d not had it, I don’t know what would have happened. It’s been amazing. Thank you.