Very eventful week this week, a couple of real highs, and the lowest of the lows.

Monday was uneventful. We like uneventful, we want more uneventful.

Tuesday, Rachel (the OT) came and discussed, amongst other things, sleeping patterns, how to record anxiety levels etc etc….. Matt (the speech therapist) was due to come straight after Rachel, but as Karen had to take a taxi to my work for her next appointment, we had to postpone him.

When Rachel had left, Karen took the taxi to my work so we could go together to Mr Millner (Plastic Surgeon) to see if there is anything that can be done for Karen’s scars, lumps and bumps. The taxi ride was eventful and had Karen in stitches. The taxi driver started a conversation and it went something like this…………(it won’t be funny when I recall it, but Karen will laugh at this in years to come).

TaxiMan (noticing Karen’s walking stick) :- Do you get DLA (Disability Living Allowance) then ?
kp :- Yes
TaxiMan :- Eeeee, i am having ‘nowt but bother getting my DLA approved. They’re asking me to go for medicals and everything.

Karen was flabbergasted that he was even applying for DLA, ‘cos he was walking fine and driving a cab for his living, but she didn’t say anything.
kp:- Well, they just gave it to me. It was very straightforward.
TaxiMan :- Nah, they’re having me go here, there and everywhere.
kp:- What are you claiming it for ?
TaxiMan :- Fallen Arches.

Karen kept her cool and didn’t laugh until she got out of the taxi and told the story to me in the car trip to the Plastic Surgeons (in Jesmond). Karen was laughing so loud, it was an absolute JOY to see. Real hearty laughter. We were still laughing about it when we got home on the nighttime.

The Plastic Surgeon (Mr Milner) was disorganised, rude, abrupt and unsympathetic. He asked Karen what he could do for her. When I asked him had he not received any pictures, he checked his bag and found about 20 of them showing all the issues. His phone then went off, and he started talking to the caller. He would cut Karen’s conversations short and be generally unsympathetic. We have found this before with some of the exceptional medical people that they tend to be like the archetypal Hospital Consultants. Anyway, he gave her a good examination, and said he would write to the solicitor.

Wednesday saw Steve (the Physio) come. It was a lovely day (weather-wise), so he took Karen for a walk and they had a lovely walk, and Karen covered good distance, going about 2/3rds up a field that Karen had previously walked the dogs up. Very impressive. He also got her to fill up the bird bowl but only using her left hand. She spilt quite a bit, but it was good exercise nonetheless for her weak side. That night, she even cooked tea (which never happens) and it was gorgeous – Cottage Pie. First good meal we had had for ages. That night, she had her first good night’s sleep for as long as I can remember. She slept the whole night with just one trip to the loo. Well done KP !

Thursday – Karen had been getting anxious about her bowels, having had no movement for two weeks. I was pleased at the saving on toilet paper. Her anxiety had been building up over the week, with us gradually upping her bowel medication to try and get her moving again, but still nothing.

Friday, it all came to a head. I got a call at work asking me to come home straight away, she was very weak, and really upset. I was home within 30 minutes – Dr Pollard to the rescue. We have a staged approach to bowel issues. She is on 2 types of pills for the constipation that comes with morphine (Sodium Docusate and Senna (3 of each / night). We had upped this to 4 of each over the past few days. Our second stage is called Movicol. It’s a soluble powder, which kp hates taking and so hadn’t taken any (which in hindsight, she should have done). Stage three, if there are issues, are Glycerin suppositories which have helped before and our emergency medication is called Arachis Oil, which is an enema.

It was enema time, we were beyond suppositories. Dr Pollard administered the treatment and then Karen went to sleep for an hour hoping for some movement. She was ABSOLUTELY exhausted. At the same time as all this was happening, Pip (the neuropsychologist) arrived for an appointment. And then while I was all rubber-gloved up, Steve (the physio) arrived for his appointment. Both had to go. A couple of hours later, there was no movement, so I called the District Nurse out. I had rang the local chemist to get another enema in, and the nurse picked this up and administered it. Karen went back to sleep again. Normally, these enemas work instantly. We didn’t see any movement until about 10.30pm at night, which in itself, is amazing. We were over the moon when there was finally some relief for kp. That night, despite sleeping all day (on and off), she had ANOTHER full night’s sleep. Incredible and very welcome.

We thought that that was the end of kp’s problems that week. How wrong could we be !

The weekend weather was forecast to be gorgeous but cold and they were right. But, it made for great dog walking weather. kp loves walking the dogs with me on the weekend, but she “didn’t feel right”. Her walking was poor and she was walking at an incredibly slow pace (much slowed than usual, and it’s normally about 1mph). But she was adamant she wanted to do the usual weekend walk. She had pains in the leg muscles around the groin area. Half-way to the fields where we let the dogs off the lead, I suggested we go back, but she wouldn’t hear of it and she persevered. She got to the bit where I let the dogs off the lead and just stood stationary watching me throw the dog toy. Normally, she would get involved, but I could tell she was in a lot of pain and discomfort. When asked to describe where the pain was, she just pointed between her knees and groin on the inside of her legs.

We are still not sure what was wrong. She spent much of the rest of Saturday asleep.

Saturday night was not a good night’s sleep.

Today (Sunday), things got a lot worse. She came to bed  about 5.30am this morning and slept until about 9.15am. When she got up, she couldn’t walk unaided. I was having to go in front of her and walk backwards holding both her arms as she took the smallest of steps. She wasn’t sure if it was muscular or a bone issue, but either way, it was crippling.

We tried to work out what could have caused it. Had she slept funny, has her medication changed, had the constipation strains took its toll etc etc…. We couldn’t work it out. It was hospital time for x-rays. Karen really didn’t want to go, so we came to a compromise. She would go back to sleep after taking some Gabapentin and see how she was when she woke up. She DID feel a bit better and the walking was improved. She took some more Gabapentin, and we had a 3-hour snooze (I had walked the dogs during kp’s first sleep), and when she woke up, she felt a lot better. Her walking is nearly back to kp’s normal walk, and we think she is out of the woods here, which is a BIG relief !

What caused it ? We aren’t sure. It could be one of the following or a combination :-

1. Bowel issues caused some muscle strain
2. Lack of Gabapentin (kp hadn’t taken as much this week as she felt it was stopping her sleeping)
3. The long walk with Steve, quite a bit was uphill
4. Sleeping on her left side – she normally sleeps on her right, but she had had TWO good night’s sleep and both of them involved a lot of time sleeping on the left hand side, something she never does !

We will have to keep an eye on it.

So, eventful week. We both hope things improve as the Summer is coming and kp has been enjoying the lighter days, the daffs coming up etc……

Fingers crossed.