Archive for January, 2009

Day 1351 to 1357. Monday 29th December to Sunday 4th January 2009

All the following bits in quotes are Karen’s own words.

Sleepwise – “Still really good”, “odd naff ones”
Pain – “Fine”
Mood – “Fine”

The big problem at the moment is “Sweats”. Some of the drugs (2 of them I think) make Karen sweat no matter if she is hot or cold. And she (understandably) hates them. Especially the cold sweats.

Every night, she has to get up at least twice (sometimes more (3x last night)), to change her pyjama top ‘cos they are wringing wet through.

But, it’s not affecting her mood which is great. It really feels like kp is back in the house. :-)

So, uneventful week really. All the treatments are on hold for the Xmas break. I took Karen to get her nails done on Tuesday. Occasionally, she has this problem in her groin area, which affects her walking. She is back to a hobbling pace. And wednesday (after the night’s sleep), she woke up with this groin problem. It meant she had to use the walking stick around the house. That lasted until Saturday morning. Thankfully, it was better in time for the dog walks over the weekend. We both really enjoyed them. And to top off a cracking weekend, she took one of the dogs around to the local shop, all on her lonesome, and really enjoyed it. She had to post some letters, hence the trip.

So, quite a relaxing week. We have tried to plan some holidays for the first 6 months of the year to give kp something to look forward. So far, we have got…..

January – Maffeys in Southampton (booked)
February – “Go somewhere hot”, we haven’t worked out where yet
March – dp to go diving, kp to maybe go somewhere with the girls
April – Nowt planned
May – Spain (booked)
June – Nowt planned

So, not a bad start to the Year.

Veronica (good friend of ours from the Big Smoke) forwarded me on an email that she had received from someone called Timothy Mason. Timothy had 2 major strokes when he was 43, taking away his ability to walk and speak. He has written a book about how this changed his life, and it’s available from Amazon (“The Best That I Can Be” by Timothy John Mason). I bought it and read it, hoping to find out how Tim “came to terms with” a significantly different life to the one he had before. The idea being his secret may help Karen. Well, I have read the book and it’s a very good read, and it has helped me, and I think it will help Karen too, so although she has had snippets read to her, she is going to try and read it herself. Fingers crossed.

To end on a positive and a funny, Karen received an application form for a volunteer position at the Stroke Association. Syd encouraged Karen to apply for it on the basis that nothing’s lost, so she did that this week. I hardly helped fill it in at all, it’s mostly Karen’s work.

But, I had to intervene when she nearly ticked the wrong box on the “Equal Opportunities” employment questionnaire. Basically, this is an extra added sheet that you get with job applications nowadays so that they can prove they are an equal opportunity employer. It asks you things like “What is your Ethnic Origin ?”, “Sexual Orientation” etc etc…

Well, Karen was filling it in and she was reading the “What is your sexual orientation ?” bit, and the options were something like…..

A-Don’t want to disclose

But Karen had a problem lining up the words with the box, and I can now officially let everyone know that Karen is a Lesbian.


Here is an excerpt of Karen’s sleep last night. She was talking for 1 minute 30 seconds and not really making much sense.


Day 1358 to 1364. Monday 5th January to Sunday 11th January 2008

kp still doing very well, but this week she has had flu-like symptoms, so it’s knocked her for 6 a bit.

This week, Natalise, the new support worker started. She came on Monday along with Patti (Natalie’s boss) to take Karen out for a drive. The idea is Karen needs to feel safe in the car with her. I went along to give directions and Karen was happy with Natalie’s driving, so that’s good.

Natalie was due to start on Wednesday. Tuesday, I was starting to think Karen was not 100%, but she kept saying she was fine.

dp:- I think you’re coming down with something.
kp:- I’m fine.

Tuesday, we went to physio at Seaham (a double-session). I took her as Natalie was on training. She did an hour with Steve doing various balance things and some treadmill work. It went very well. Then it was an hour with Joanne who did her massaging and stretching to try and loosen Karen’s left shoulder. It was educational for me too. Karen’s upper stroke-side limbs have a tendency to curl in. This happens with all of the limb, so her shoulder stiffens, her lower arm is carried at bra height (without her realising), her hand curves in, and her fingers curl in, so Joanne makes sure they keep “not stretched in”, although the physios call it some thing else, like “maintain extension” or something like that.

Steve explained it well. The brain doesn’t receive as many signals from the limb as it used to, so to compensate it sends more signals to the arm to try and get a response, but it doesn’t, so more signals get sent and in the long run, it has the effect of telling the muscles to contract. You learn somat every day.

Interestingly, Steve told Karen that he thought she was coming down with something, and at that, I couldn’t help but tell Karen that I told her that too, but she still wasn’t convinced.

After the physio, we went for a bag of chips and to sit at the seafront. It was freezing and blowing a gale, but that’s what makes the chips so much more enjoyable. Karen’s appetite (which is never very good), was not upto it, so she had some “fresh air” instead.

After physio, home for a bath.

Wednesday, Natalie started. We sat down with her and did our usual spiel (to new support workers). I went through Karen’s injuries and how they affect her, especially the brain injury. Then the girls chatted for ages to get to know each other more. Karen later told me that she thinks Natalie will be great, and I concurred.

I think they spent the afternoon following my mum’s recipe trying to make some mince pies, and in my opinion, she did a great job, but because they weren’t as light and perfectly formed as my mum’s, she didn’t think they were too clever, but they tasted lovely.

The following day, the girls spent the morning preparing veg for the evening meal, which they had to abort ‘cos Karen couldn’t face food any more. I finished it off and made some lovely Steak and Ale Casserole, but unfortunately, Karen couldn’t face it on the night time, so I pretty much ate the lot :-)

On the afternoon, I took Karen to an appointment at the Sleep Clinic in Durham. Karen’s sleep is 10x better than it was (thanks to Amytrypteline), so the lady consultant suggested we stick with it, if it was working, because the other option is that she wear a mask to bed everynight, which pumps air into Karen whenever she breathes in. We were happy with that.

Friday was an awkward start to the day. Karen got up and just sat on the bed in the changing room and couldn’t think of anything. She didn’t know what to do, should she have a shower ? shouldn’t she ? I couldn’t do right for wrong, and it got a bit heated. In the end, she accepted that she had come down with some bug and that she should take it easy. The plans for the day were scrapped and Natalie who had arrived on time, was told her services wouldn’t be required. Karen slept a lot of the day, and she woke up better for the sleep, which was great.

She has hardly eaten anything this week, the odd mince pie, the odd biscuit, and probably 2 boxes of Bran Flakes, but no proper meals. She couldn’t face the Saturday night pizza. But, at least she has accepted that she has come down with something and that this is the normal kind of downer that we all get from time to time.

Saturday and Sunday have been a leisurely weekend. I walked the dogs, ‘cos kp wasn’t upto it, no energy at all.

This is a photo I took on the Saturday dog walk. It was the most beautiful red sky, but not sure this photo does it its full justice.

And that’s this week in a nutshell.

Next week is a busy week.

Day 1365 1373. Monday 12th January to Tuesday 20th January 2009

Happy Birthday Mum (She is 21 today)…..

Well, busy week and a weekend away means a late blog entry.

Monday started the week off at full speed, with a visit from someone from our solicitors who had come to take a statement from Karen and I, relating to Karen’s case. That took about 3 hours, 2 hours for kp and an hour for me, both of us had to be out of the room, while the other gave their statement.

Natalie arrived on time at 1pm, in time for Syd coming for his regular visit. The latest state of play was discussed with Syd and it probably makes a nice change for Syd to be greeted with an upbeat kp, who remains in top form :-)

Tuesday was physio in the morning and OT in the afternoon.

Wednesday and Natalie took Karen to the Calvert Trust centre in Kielder. Quite a trek with the idea being that if Karen liked it, she could attend for a week (with Natalie) for one of their speciality weeks. They do things like Outdoors Week, Sailing Week, and kp was interested in Health & Beauty week. It sounded like a gorgeous place to go for a week, but after quite a bit of consideration, Karen didn’t think it was right for this time of her rehab, but she is bearing it in mind for the future.

Another promising thing for the future, is that she has been approached by the Stroke Association with a view to kp doing voluntary week helping them out in some form. She discussed this with Syd. Syd is great, he doesn’t give advice, but a bit like a psychologist, he helps Karen make her own decision, and the upshot of the Stroke Association thing is that she has filled in the application form, sent it off, and since had a discussion with them, saying that “now is not the right time, because rehab is so busy….” but she will be back in touch in the Summer.

Thursday, the girls went shopping somewhere for presents for the kids on our  visit to Southampton.

Friday, we drove down to Southampton. We were both dreading the drive, but it wasn’t at all bad, taking about 5.5 hours. 6 hours with a stop for lunch. It was great to see the Maffeys again and catch up with Tracey, Mark, Megan (6), Thomas (1.5) and Marge (93). :-)

Lots of chatting on the first day. Saturday saw Karen and Marge go into Southampton shopping with Tracey, whilst Mark and I went walking with the kids.

Sunday was pretty much the same again, but thoroughly enjoyable.

Yesterday (monday), we drove back up with Marge, dropping her off in Middlesbrough, and today (tuesday), has been physio and a trip to Costco.

So, busy week. Lots of fun.

kp remains top dollar ! Bad sleeps are few and far between thanks to Amytrypteline. Pain is rare and life is really good again. At this rate, I’ll have to start think about me getting back to work again :-)

Keep it up kp !

Here are some photos of our trip to Southampton…..

Regular readers will remember Karen’s confession about being a Lesbian, well, it seems I am wrong, she’s a car…..

Here are Megan and Thomas watching TV…..

Here are Thomas and Megan. Thomas has very big feet !

And this one is of Megan up a tree on the walk we did with Dad.

Day 1374 to 1380. Wednesday 21st January to Sunday 25th January 2009

Wednesday, Karen and Natalie went over to Seaham for a physio session with Steve. It was Steve’s opportunity for him to explain to Natalie all the exercises Karen needs to do to stop her upper left side from stiffening up. That went very well, and she came home with some equipment to aid this process.

Wednesday night, Karen had a bath, and her mood dropped like a lead weight to rock bottom. We couldn’t work out why :-(   We decided to sleep on it, but in the morning, she felt no better and we were both concerned that it could be the start of another bout of low mood or depression and after such a good run, neither of us wanted that.

Fortunately, thursday we had the 2 perfect appointments for the dip in mood – the psychologist (a.m.) and the psychiatrist (p.m.). We went to Gosforth to see the psychologist. She asked what had changed and the only things we could think of were the 2 appointments today (both brain oriented) and that they may take her back (in her head) to unhappier times, or that Veronica (our good friend) hadn’t been in touch and we were both concerned about her and if she was ok.  The psychologist thought it unlikely to be either of those scenarios and thought it may just be an off day. “We all get them”. She thought that this was unlikely to be a long bout of low mood or a return of the depression, because it came on so suddenly.

What she said rang true with us, but at the same time, it didn’t help Karen. But, she suggested leaving it a few days and calling her this coming week if it hadn’t improved. We tentatively agreed.

Karen didn’t feel up to making the trip to Hexham to see the psychiatrist, so I rang him to arrange for a phone session, which he kindly obliged. Without prompting, he said the same as the psychologist, in that it was unlikely to be a long term thing, given the speed of the onset. So, feeling no better, we crossed our fingers and had an early night in the hope things would look rosier the next day.

I got Karen up in time to have a shower before Natalie got here, and she was in 2 minds whether to get back to bed, or get going with the day. She’d had a really bad night’s sleep the night before. Both would have made her feel better, but she couldn’t decide which direction to go. It really was 50:50. So, we let the iphone decide. I have a little application on my phone that makes a decision for you. And it said “Yes”, get going with the day, and it did the trick.

By the end of the day out with Natalie, Karen was feeling a lot better, and we hope it was just an off day. The girls had already arranged to go for some pampering at Whickham Villa. Unfortunately, the masseuse had called in sick, but the girls filled that slot with some shopping at Sainsburys. Karen enjoyed a nice float in the flotation tank. She was fast asleep when Natalie went back in when Karen’s hour was up. I find that very hard to believe ;-)

The girls then went into the Hydrotherapy pool for 30-45 minutes to do some limbering exercises and Karen came back feeling so much better. Great :-)

Saturday (yesterday), Karen had already arranged to go and see her sisters over in Middlesbrough. They have a sister’s day once a year where they all get together, and Natalie came to take her over, and Karen really enjoyed it. There is talk of it being a monthly thing instead, which would be great for kp :-)

Karen was gagging for today. A day when she can lie-in and just chill with her home’y (me). I was under instructions not to wake her up until she woke up naturally. Her sleep has not been too great this week generally, so she was eager to catch up. We can rule out sleep as being the low mood cause, because it had been fine up until then. So, when she did get up (about 11am), we made the most of the day and went dog walking straight off, for a lovely walk, after some horrendous weather overnight. So, good day so far.

We are trying to get a holiday booked for sometime in the near(ish) future. Egypt is the destination we are aiming for, but I detest trying to get the thing arranged, ‘cos it takes SOOOOO long. Far too much choice on t’internet.

So, good week overall, with a scary middle !

Busy week coming up. Pain in control with another reduction in the fentanyl patches coming this week. Sleep 8x better than previously, but a bit of a dip compared to recent weeks. Mood remains good, with a bit of a dip midweek. So, fingers crossed for a good week coming up !

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