Archive for July, 2008

Day 1169 – 1175. Monday 1st July to Sunday 6th July 2008

Awful week generally with some good bits.

Monday and Rachel (OT) came over and kp made a loaf of bread (with her left hand). It looked and smelled great. No comment on the taste.

Tuesday and kp (and I) attended a medico-legal appointment in the centre of Newcastle for the ongoing legal case. The consultant wanted to see me first and then kp (on her own). He saw me for about 3/4 hour, and then kp for about two. kp’s sleep is still to pot, and after 2 hours of tests she was done in. The tests weren’t complete, so he is going to have to reschedule for another date to complete the tests.

Wednesday and we both went for our counselling sessions. I enjoyed mine much more this week, probably feeling more relaxed with the psychologist, but I still remain sceptical, but certainly talking, being heard and thinking about things from a different angle are all helping me.

kp’s went well too. One of the things that the medico-legal neuro-consultant had said previously to me (and Karen) was that it is too much for a person with a head injury to be expected to go the whole day without any rest, which is what she was trying to do to correct her poor sleeping patterns. He suggested breaking the day into 3 chunks (morning, afternoon and evening) and in each of the chunks ensuring that there is some physical and some mental activity AND some rest. This “felt” right to me and kp. We mentioned this to kp’s psychologist Jane and she agreed that the other well-practiced method wasn’t reaping benefits for kp and to scrap it as kp was getting too down over it.

Another of the things that Jane had suggested is that kp ensures she has a DAY OFF each week. This is a day without ANY rehab and it is for kp to do what she wants with, ie visit family in Middlesbrough etc etc… This was music to our ears.

The medico-legal neuro-chap also had suggested kp attend a sleep clinic so I expect something will come of that in the future.

We went for a Subway sandwich for lunch before kp went to her physio session (taxi) and I returned to work. Steve (physio) had kp doing exercises at the gym, one of which was the bike.

kp has been on the bike before, but it always left her in too much pain with her needing to take morphine tablets to keep on top of it.

This time was the same if not worse and this was the start of a hellish end to the week for Karen. Not all of the following is related to the Bike exercises, but the week just went downhill from this point onwards.

The following day Syd (Case Manager) came for a couple of hours for a catch-up. kp’s pain was on the increase and she was popping the morphine tablets.

We had been trying separate beds for a couple of nights to see if it improves kp’s sleep and it did a little probably because she could watch tv in bed (or read) without disturbing me and it was easier to just fall asleep.

Thursday night, kp didn’t feel just right and was scared to sleep on her own (very unlike kp). She had had a headache / migraine since the bike exercises.

The following day (friday) and we had a 10am medical appointment in Newcastle.  kp was all showered and ready to go and just as I got the car out, she decided that she didn’t feel upto going. I cancelled the appointment and all the taxis which were going to take her back home, so I could go into work. Bonus for the lads at work, ‘cos they weren’t expecting me until 12pm

She went to bed for the rest of the day needing a dark room. She had some of the best sleep for ages (which was great !).

That night, I was due to go out with the lads from work for Nigel, John and my leaving doo. We had it all planned down to the taxis, Nigel staying at our house etc etc….

Work was REALLY busy. One of the lads was on holiday – things were going wrong with a few customers IT solutions and then at about 3.30pm I got a call from a customer whose credit card processing system had been hacked. 30 minutes later as I tried to juggle lots of IT balls, kp rang. She was in tears. She was vomiting and a few other issues were making the matter 10x worse. kp is a pro-vomiter. She could vomit for Britain and not even bat an eye-lid, so for kp to be upset, things must be really bad !

I had to go ! I phoned my boss and he took the “hacking” problem off my hands which was great and then I dashed home. kp was in a right state when I got home. She was very frigtened about everything that was happening. One of her concerns was that all of the sickness/migraine stuff was down to the problems that have been predicted (to her endocrine system) because of all the morphine she takes.

My gut was that she had caught some virus and the pain was leftover from the bike exercises. I put her to bed and gave her what I thought were the right meds to sort her out. Certainly, things were better in a dark room.

She remained frightened and didn’t want me to attend the leaving doo, which is very unlike kp. She normally just battles on. Of course, I wouldn’t have gone anyway with her in this state.

I cancelled my attendance at the night out.

The weekend that ensued was awful. kp remained rock bottom mentally and physically, not eating and very down. She was in the bedroom 90% of the weekend until 1pm Sunday. We tried anti-migraine tablets (Hemicraneal) which normally sort kp out. We tried Solpadeine (which I use and they guarantee a headache goes for me), but nothing worked, and kp’s worry escalated. I had suggested a few times that we get the Doctor out, but kp wasn’t having it. She has an understandable big fear of doctors/hospitals now. This morning, I had a brainwave. Let’s try aspirin. And SUCCESS ! They have improved the headache to what kp calls a “normal headache”.

The relief is tangible around the house. The house felt really low, but now we are talking about watching the Wimbledon Final. Wahey !! I hope and think we may have turned a corner !

She has also eaten (and kept stuff down) for the first time (for a few days). It may only be a bowl of cornflakes, but it’s a start and it’s inside kp, not down the loo !

So, pretty awful week (or it feels it).

On the work front (for me), it’s come to the time where appointments are getting in the way of work, so we have come to a suitable arrangement which suits both sides.  I am leaving the full-time employ of my company. They have been great with time off but it’s just getting a bit too much for them now, and although I am leaving full-time employment with them, I feel sure they will use me as a contractor and it also allows me to work for other companies on a contract basis, which suits our circumstances better.

So, bad week overall, but a happier week in sight.

Day 1176 to 1182. Monday 7th July to Sunday 13th July 2008.

Well, much better week this week. kp was on fire yesterday (Saturday) and was picking ME up !!

Monday – NOWT ! kp had her first day off which she thoroughly enjoyed !

Tuesday – Marie, the dog walker, was on holiday this week (apart from monday), so we had arranged for Adele to come up every day so she could take the dogs with kp. It worked out well. In the afternoon, kp went to physio at the local recreation centre with Steve (the physio). I think she said she did treadmill and bike and enjoyed it as per usual.

Wednesday – We went to see Jane and Steve (our psychologists). One of my favourite sessions so far (for me) and loads of things slotted into place. Karen enjoyed hers too. I am quietly surprised at how helpful they have been to me and I KNOW kp finds them similarly helpful. Following that, we had to hot foot it to Ponteland for an appointment with Dr/Mr Yellowlees (an anaethetist who specialises in Pain Management). He was excellent. We told him all the meds kp was on and in a nutshell he agreed that it was the right stuff. He couldn’t comment on the anti-depressant and suggests we see a Psychiatrist for that. The interesting thing he said was (in response to something kp had said)…..

Mr Yellowlees – “You shouldn’t be taking pain medication (analgesics) to control pain ! You should only be taking them to ensure you can still function”
Well, we hadn’t heard that before so we were intrigued. What he meant was that kp will have SOME pain, but you need to throttle back on the pain meds until the pain is so much that you can’t function as much and then keep it a bit over that amount. He stressed that kp MUST still keep up the rehab and not reduce them so much that it affects that. So, in a nutshell, kp has to gradually (very) reduce the morphine patches (Fentanyl) and the Gabapentin. This has to be done gradually.

So, over the next couple of months, we are going to shave a little off both of them.

Thursday say kp take a taxi to the recreation centre to meet with one of Steve (the physio)’s assistants to do some arm-stretching and other Physio work.

Friday and kp went again to the recreation centre but this time for accupuncture with Steve. The accupuncture was to relax kp and to help the pain. She didn’t have that much faith in it, but was going to give anything a go, but she hasn’t half seemed better on the pain and mood front over the weekend, so maybe it has worked.

When I suggested this to kp, she said “It wouldn’t work so quick”

Saturday and I had a real down day. I can’t 100% put my finger on it, but I was rock bottom. You’ve heard the expression “Got out the wrong side of the bed”. That’s really how it felt. The moment I got out of bed, I felt rough (mentally). I think the thought of booking a holiday for the end of the month (which was the job for the day) was too daunting. I hate arranging holidays. It takes sooooooooooo long to find the right hotel etc etc…….

But even after that was over, I still felt rough and there was NOTHING to assign it to. Everything in our lives is looking up, kp’s feeling good at the moment and positive, so am I about the future, yet I couldn’t pick myself up. I just wanted to go back to sleep.

kp was absolutely brilliant. She was “ON FIRE !”. She was so positive and was making me laugh and everything, but nothing would pull me out.

Anyhow, I woke up this morning feeling 10x better and back to normal. Very strange. It literally is like I got up from the wrong side of the bed and I never have had that before !

kp had a bad sleep last night, not going to bed until about 6am. So she is having an afternoon snooze. She got up about 11am to walk the dogs with me. On the dog walk, which is normally very quiet, we were walking along and then all of a sudden about 100 people (all ages) came towards us (walking) along this narrow path. It was very weird. We were laughing, because none of them had seen our 2 dogs (as the people in front of them blocked the view) and when they saw them, most of them visibly shook at the sight of 2 German Shepherds. Quite a few put their hands down to stroke them then thought better of it. Comical.

So, very good week really. kp and I are both excited about the future.

Day 1183 – 1189. Monday 14th July to Sunday 20th July 2008

An exhausting week, lack of sleep remaining the main issue and starting to cripple kp. Some fun times, some real low points.

Monday and the OT came with an assistant who is going to be taking kp into town and getting her out and about whilst a new support worker is recruited.

Tuesday was due to be physio, but Steve was ill, so it was cancelled. kp was disappointed, but please to have a day off at the same time.

Wednesday was kp’s official day off. She had planned a full day. The friendly local taximan picked her up and took her to the hairdressers to get her nails and hair done. She then got another taxi to take her to see Marie in Middlesbrough. Marie had a new dog called Strike (lurcher) and he went missing once but was found. Well, this time he jumped from a first floor window and has never been seen since. Marie has took in a new dog called Tye. He is a gorgeous (AND STRONG) cross between a German Shepherd and a rottweiler (I think).

He is VERY strong. Michelle also visited Marie’s to see the new dog. Apparently, he nearly pulled Michelle over when they were playing “Tug of War”. And at one point, Tye got a hold of Karen’s coat and both Marie and Michelle were up like the gun had gone off at the 100m sprint, to stop him pulling kp over. kp was very amused.

I went straight to Marie’s from work to pick kp up.

I think kp overdid it a bit on her day off as she was knackered.

Thursday consisted of some muscle stretching exercises with Steve’s assistant (Joanne) and then in the afternoon, she met me at work and we went to our counselling sessions. We then had an appointment at the doctors for a few things. Whilst there, I copped a glance at the computer screen which detailed the cost of Karen’s Fentanyl patches. I was gobsmacked. Each day, we put 2 x 100ug patches on so that’s £40. So, that’s £280 per week !!  Nearly £15,000 a year ! Thank God for the NHS.

Friday and kp had some more accupuncture from Steve and she beat her record on the treadmill at the local fitness centre. Well done kp. That night, Adele brought the kids over (Abby (11) & Louisa (5)) to stay the night.

They were so excited. It’s the first time for at least 3 years that Abby has stayed over, and Louisa never has. I met them from work at the local fun factory. Before, I had got there, kp had took them there (in a taxi) and later she recalled that she was a scared by the experience. Imagine 2 very excited kids entering somewhere with kp, constantly asking kp questions, and then entering this really bustly place with 50000 other kids in there all shouting. It was too much for kp. She couldn’t work it all out. Thankfully, Abby was great. At 11, she has a very caring nature and I get the impression she helped a great deal. Thankfully for kp, they wouldn’t let Abby (at 5ft 1in) into the fun factory, so she made sure kp was ok. Abby was a bit disappointed.

When we got home, Abby wanted to play on the Wii-Fit. She was mad on the Hula-Hoop one and when she got her good score, she wanted me to try and beat it. The Hula-Hoop one involves swivelling your hips and looks very funny. So the girls were amused at my hip-swivveling.

Before the accident, kp enjoyed having the kids over, but they were soooooo noisy, she was keen to get a bit of a break, especially after the fun factory saga, so she went for a bath. Using the bath buddy, she went down herself and I checked she was ok which she was. So then I went to swivel my hips with the kids.

About 15 minutes later (I got really engrossed with trying to beat Abby’s high score), I heard shouting from the bath (Abby heard it too, Louisa didn’t). I ran through to beat greeted with a kp in tears sitting in an emptied bath next to a half-inflated bath buddy.

kp:- I am stuck and noone heard me.

Lots of bawling ensued and I gave her a big hug in the bath and apologised for not paying more attention. I was really kicking myself.

It was absolutely heart-breaking.

It was so noisy with the kids I hadn’t heard her at all.

The bath buddy is working out to be absolute pants. She keeps sliding off when she is halfway out. And that’s what had happened. Without the water in (she had let the water out), she can’t work out how to get back on. So sad !

I got her out of the bath and made sure she was a bit calmed down before kp told me to “get back to the kids“.

kp:- I’ll be fine.

Abby was looking at me in a way that I knew she was aware what had happened….

Abby :- Is everything ok ?

I explained that kp was stuck in the bath and she had got a bit upset.

So, it was a really sad evening. Louisa was colouring in and totally unaware of what had happened.

The following day (Saturday), we were all due to go to “The Forbidden Corner”, but first we had to walk the dogs.

kp had had yet another awful night’s sleep, not coming to bed until about 7am. I got up about 7.30am to find the kids watching TV in the front room, so we went to walk the dogs, kp went to bed.

The kids absolutely loved it and the dogs absolutely loved the fact the kids (and I) went down to the stream with them, something we don’t normally do, ‘cos kp couldn’t get down the bank.

Here is a foto (crap I know) of the kids holding a dog each.


Once back, we got kp up so that we could go to “The Forbidden Corner”. “The Forbidden Corner” is a wonderful place to visit with kids. It’s hard to explain what it is, but it’s like a maze of weird things and lots of things kids and adults would enjoy.  Some scary bits, some hilarious bits. Well worth a visit. It’s near Leyburn so was a canny hike.

We went to pick Adele up first (in Middlesbrough) and kp slept (and snored) pretty much the whole way to Middlesbrough and then to “The Forbidden Corner”.

We had a great time there. kp and I had to stop halfway through as she was too tired. So, we went for a snooze in the car. kp slept the whole way back AS DID THE KIDS !!! Adele and I found it very funny to see both kp and Abby snore in exactly the same way. It was like “Stereo Snoring”.

Very funny.

And the best bit for me was when we got to Adele’s. kp stayed in the car as I helped Adele and the kids into the house with all the stuff in the boot. kp woke up to give them all the kiss.

And by the time we had got to the front-door, Abby looked back to see kp nodding off again.

Abby (shouting at the rest of us) :- Look at Karen, she is falling asleep again.

Well, kp woke up at hearing this and started laughing at herself, which had us all in stitches too.

kp (laughing) :- I can’t even stay awake until you get to your front door !

It was probably one of those things you have to be there for, but I am still smiling now, thinking about it !

We had a quiet Saturday night, turning in quite early, as kp just couldn’t stay awake.

She was up most of the night (as per usual).

Today, we did a short walk, ‘cos she was knackered (especially one of her knees)  after yesterday and she has been asleep on and off most of the day.

So, some real low points generally, but kp is doing her best to remain positive and latching on to the little funny’s that come along. We had planned to book a holiday today for when I leave work, but kp’s been too tired.

Pizza night with a film tonight, so we should have a good night.

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