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Advent

I can't quite believe it's the first Sunday of Advent today, but the calendar assures me it's true. Tonight Claire and I set up the Advent wreath on the dining table, and she lit the first candle. I probably won't post a picture because it's the same one every year...

On the weather front we have been quite lucky so far - freezing cold but mostly blue skies. We did have snow yesterday morning, but it didn't last past lunchtime. Other parts of the UK have been completely snowed in. I'm so not ready for winter weather or even Christmas: I feel like I've missed half the year.

Anyway, I'll leave you with a little audio clip of Lyle, courtesy of Claire who is cuddling him on the sofa right now - cue 22 seconds of purring with the odd squeak thrown in:

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I'm trying to get better at keeping my word these days.  Yesterday I promised that I wouldn't do too much today and although I did go into town to take Claire to lunch (she's broke till pay day, but then who isn't?), I didn't then go and do some filing for Dr A as I should have done. She'll definitely understand - she only gives me stuff to do because I beg her! 

So, after spending the morning trying to wake up, I walked to the shopping centre in time for Claire's lunch break. We had a jacket potato each at the "Giardino" with her 40% staff discount. I don't think it's the same discount everywhere in the shopping centre, but it sure comes in handy when you want to have lunch on a budget.  I didn't stay long because a friend of hers came to join us and they had a lot to catch up on - and much as I'm supposed to be a "cool mum", I didn't think they wanted me there...

First I stopped off in Clas Ohlson, a relatively new shop in town. Being Scandinavian, they have all manner of Christmassy items and I had a good old browse. I only wanted candles for our Advent Crown that we'll setting up on Sunday, so I didn't spend a huuuuuge amount, although it's the kind of shop where you could definitely splurge!  A bit like a small, in-town Ikea I suppose.  After that, I had to have a sit down on the handy bench in front of the shop, before trekking back up to the bus stop. 

The weather was perfect today - crisp and cold with blue sky. When I got home, the sun was streaming in the front room, and this is who was waiting for me:

Well, that's all for now.  I'll be back tomorrow. Maybe....!

This and that

Oh last night was lovely: I had offered to babysit little Alex if my friend wanted a date night with her husband, and they took me up on the offer so they could go and see the latest Harry Potter.  As I was preparing to go out, the following exchange took place:

Claire - I'm jealous

Me - You should come with me!

Claire - Um, Alex is cute and all that, but I meant I was jealous of them going to see Harry Potter....

So I went alone. I was slightly anxious that I was going to be left in charge of an 8 week old baby for the first time in probably 20 years (!) but I knew it would be ok.  When I got there Alex was wide awake, and I tried to get some giggles out of him, to no avail.  Mum and Dad duly went off to catch the film, and I was left "holding the baby". We had some cuddles but it soon became apparent that it was dinner time, so I prepared his bottle and changed him while it was getting to the right temperature. "He might not take it all" said mum - but Alex guzzled those 6 ounces like she hadn't fed him for ages. We had some bonding time, where he obligingly smiled at my silly antics, then he fell asleep on me, and I thought I'd take him up to bed. Of course, when I put him in his pyjamas and "growbag" he woke up and became rather fidgety so I had to take him back down with me.  He was so sweet though, because he dozed off on me again and then started smiling in his sleep - until at one point he actually did a belly laugh!  He is obviously a very happy boy :) 

Anyway, when I was cradling him, soothing him while he fidgeted, I went straight back 20 years and hummed lullabies to him, which he seemed to like.  This got me talking to Claire this evening about how I used to sing to her, and my favourite was Golden Slumbers.... which then got me remembering that my sister Melanie once asked mummy to sing "Golden Slums" to her, ha ha. And then, by association, we moved on to the Beatles version and started to search Youtube for some Beatles songs.  I found this rather lovely montage that someone did to Golden Slumbers, so if  you've got 5 1/2 minutes to spare - enjoy!

  

Sadly, today I paid the price of the accumulation of busy days (after the hospital trip to London, arts and crafts, a GP visit and babysitting) and started to feel really dizzy and disorientated this afternoon. I put it down to fatigue and stayed home. Nothing a little nap under the blanket with the cat couldn't sort out!  I don't think of it as a setback, just a reminder that I still shouldn't fill my days too much. Tomorrow I plan to do practically NOTHING. 

Anyway, I'm sure there was other stuff I wanted to talk about, but there's no time now. Nite nite! Oh, and Happy Thanksgiving to my American friends!

The one where I'm grateful I don't commute any more

Today was a good day - I had an appointment with the rheumatologist in London this afternoon, and I was feeling pretty good about things. I popped in to tell the people at the Community Centre that I wouldn't be able to attend the chair-based exercise class, then I made my way to the Tube station. Now, bear in mind that I used to do this every day and it only took me 15 minutes each way; then bear in mind the fact that until quite recently walking 15 minutes would leave me totally exhausted. I didn't have the cashola to get a taxi, but I figured it would be the same distance as walking into town and then I'd get to sit on a train for an hour to recover. I was very proud of myself because I did it. I didn't feel exhausted like I have done in the past, I just felt nicely tired.

The hospital where I go is near where I used to work, and the journey is about 1 hour on the actual train. It's a smooth journey, with just one change on the same platform, so not that tiring if you aren't doing it in the rush hour. I had planned it so that I would have a bit of time to stop by and see some old colleagues, although I missed a couple of them who had been sent on an errand by one of the Directors. Nevertheless, I did pop in and see the Office Manager, and one of the other PAs came down to see me too. It was really nice to see old friends and familiar faces - everyone who recognised me waved or came and said hi. The stories were still the same old same old, though, which is rather funny to hear when you've moved on.  Several people told me that the second girl who took my job (the first having left after 2 weeks) is really struggling with the guy I used to work for, and they all said I "must have had the patience of a saint" to last 3 years. Well, yes, I think I do - but I'm not doing that any more, oh no. Life is too short to spend it organising a grown man who should be able to tie his own shoelaces and blow his own nose LOL!  Ok, if you've ever been a PA you know what I mean; obviously I didn't really have to do those things for him. 

Anyway, I made it over to the hospital with a few minutes to spare and took a seat in the waiting room. I could see the Consultant was there, but this time I got to see  his Registrar. He was a very pleasant chap who said he'd been reading in my notes about the haemorrhage, and said I had been really lucky - then touched wood!   After the haemorrhage I had to stop taking the medication that really helped with my joint pain, so it has been a lot worse. The plan of action is now to up my other medication to the maximum dose AND take Paracetamol four times a day to try and keep the inflammation at bay, and then I'll be reviewed in January when we'll decide where we go from there.

Of course, by the time we were done it was the rush hour, and I know how awful that journey can be from past experience.  I didn't get home till 7pm, like in the "good old days".  On the way home, all I could think was "thank goodness I don't have to do this every day any more".  I've had a quiet evening with Claire, and now I really should get off to my bed.  Hopefully I'll get some photos taken tomorrow, to jazz up the posts a little bit.  Nite nite!

Helping

Yesterday I bumped into one of the nurses I was working with at the time of my SAH. I had heard on the grapevine that someone's daughter had had one not long after me, and it turned out to be this lady's 19-year old. We talked and as the conversation went on, I could see she was really astounded at how well I am doing. She said "I wish my daughter could meet you", so I decided there and then that I would try and help her. After all, when I was in hospital my first thought was that I would try and set up a support group when I was able.

So this morning I went along to meet C - a very sweet girl who is struggling to come to terms with what happened to her. Her stroke was on the left side of her brain and she has been left with slight speech difficulties. She was also worse off than me in that her right side was paralysed after the event and although she can walk and run fine, her hand is still giving her trouble.  Would you believe it - she was sent to the same London hospital that I was and her neurosurgeon was the same lady who did my operation. It's a small world. 

I was happy that I was able to bring along some papers that I had received from Different Strokes, an association set up by and for younger stroke victims, and I think that my training as a life coach might have come in a little bit handy.  As she's a bit younger than Claire, maybe they'll be able to hang out a bit too, as neither of them are the type who like to go out drinking and clubbing....  It felt really good to be able to do something for someone else. 

Right, must dash as I have an appointment with Occupational Health at the hospital. 

Happy News

I've been rather busy today, hence my late post, but I thought I'd pop in and show my face. First of all, how can I do a post without mentioning the latest happy news about Prince William and Kate Middleton's engagement finally being official. I thought it was lovely that William proposed with his mother's engagement ring because he wanted her to be included. Awwww. What a lovely young man. I confess I've been something of a monarchist ever since I was little, but I can't give anyone a rational explanation why, so don't ask me!

Changing the subject totally, I thought I'd share this clip from a forthcoming Glee episode. You might have heard about it - it's Gwyneth Paltrow singing Cee-Lo's "Forget You".  I love it. And my favourite line is at the beginning of the clip "what would you know about Cee-Lo? Cos you're like 40".  (I don't know when this is out in the UK):

I'm actually trying to cut down on my TV watching, but I haven't been able to resist the wonderful "Turn Back Time - The High Street".  The latest era was the 30s, which is one of my favourites, and it made riveting watching.  I particularly like catching glimpses of the pretty blue shop "Nostalgia at No. 1" which is run by Nicky of Nostalgia at the Stone House. I've been reading her blog for ages, and it's thanks to her that I had my eye out for this programme. Rather than linking to iPlayer, I'll embed the first part of the first episode that someone has kindly put on Youtube so that my family abroad can catch up with it: unfortunately, BBC iPlayer doesn't let you watch programmes abroad which is really annoying!  Here goes - enjoy:

It's way past my bedtime, so I'd better leave it there. I would, however, like to finish by saying I really feel like I've turned a corner recently, with the fatigue. As I said earlier, I had a busy afternoon and I came through it without feeling exhausted, just nicely tired as if I'd done a full day's work. Let's hope this is the home straight!

Right, if the girl next door could just stop her whooping and hollering I might get a good night's sleep... Well, at least the arguments seem to have stopped. Mustn't grumble.    Nite all :)

Thinking ahead

You know I mentioned pacing? Well I had a really positive week last week. I thought I'd finally cracked it, but didn't want to get too cocky, because, you know, I've been there before...  and true to form I ended up spending Saturday morning in bed. But I can see that there is progress. My short-term memory is lots better, even if my immediate recall is sometimes a bit iffy. I can concentrate better than before when there is noise going on, although I don't know how well I would fare if there was constant noise going on around me. Indeed, after a couple of days of Claire at home and having a friend to stay overnight I was desperate for some peace and quiet towards the end of the week!

I have worked out some strategies that help me day to day, such as putting reminders in my phone so that it beeps at me, which is alright unless I let the phone battery die, then I'm in trouble.  I have a white board up in the house so that I can write stuff on it and I'm sometimes even remembering to actually look at it. That is after all the point. So all in all, I think it's quite positive stuff. 

As for the title of this post, well I have worked out what I want to do in life and I am trying to use this time at home wisely, little by little putting things in place to achieve my goals. I won't go into it here, but suffice to say the world is my oyster, baby!

No pictures today - the weather has been positively blah and although I did plan to go out and take some, I thought Claire might not thank me for getting the camera wet. 

However, I thought I'd leave you with this little bit from the Graham Norton show that made me laugh:

 

Well, that's all from me. Nite nite all x

The red cups are back!

Well, for some it's not Christmas until the Coca Cola ad appears on our screens. For me and Claire it's when the red cups make their appearance at Starbucks :)  And they are here!

  

Today I was going to do some photo editing and then go to fatigue management: well, first our Microsoft mouse finally died, and secondly, the OT was off sick so my session got cancelled. Instead, I thought I'd make a quick trip into town to get a new wireless mouse, some tights and some non-permanent hair dye because I've finally decided I have waaaaaay too much grey for my age....

I got the bus in, and decided I was going to pace myself, and make sure I sat down every 15 mins or so. It worked quite well and I didn't feel as exhausted as I usually do, so I feel like I'm making some progress at last. I was just finishing my shopping when I got a call from Claire who was due on her lunch break, so instead of going straight home we met up to have a sandwich near her work. Afterwards, I was full but she wanted a hot chocolate (it was cold and raining and she was cold; I on the other hand have the wonderful internal heating system that is, um, due to my age... and I was actually too hot), so we popped into Starbucks to check out the red cups. It felt very Christmassy. 

Much as I would have loved to do some "real" shopping, mine consisted mainly of boring old cleaning products and other essentials. However, I did manage to do a bit of window shopping, gathering ideas for presents for loved ones. I made a little mosaic of things I liked in the shops today.... just the stuff I would like to get myself so I don't give any Christmas secrets away:

These are just iPhone pics and the colours aren't fab, but it gives you an idea of the kind of stuff I was admiring. The cushions are wonderful appliqué ones and much prettier IRL. They are all part of the Maison Vintage range in Bhs, together with the artificial flowers in the jug, the hand-painted bowls, the doormat and the lovely sewing box marked "make do and mend". The china plates and cake stand are by Portmeirion and are from John Lewis. 

Sigh. I do love the shops at this time of year. Especially mid-week when they aren't so crowded.

Well, it's way past my bedtime, so I'll leave you with a pic of the gingerbread house that Claire put together with her friend Kaylee... with a little help from me because it was so much fun.  (It's from a John Lewis kit that Claire bought back in September (!) because last year they had sold out by December when she wanted to buy one).  Enjoy!

Happy Days

First of all, Claire has been doing Christmas shopping and she came back with a little gem for me the other day. When I protested that I didn't want anything now, she said she had to give it to me before Christmas. I see why now:

Aren't they divine? They are hand decorated blown glass, and remind me of the kind of baubles we had on our tree growing up - which is of course the whole point of Cath Kidston stuff!  Thank you ma Clairette chérie!

In other happy news, yesterday the postman brought a letter from my MP, enclosing a copy of a letter he had received from the infamous Atos Healthcare who carried out my medical and found me fit for work.  I think I shall have it framed. It reads:

"Jobcentre Plus forwarded a copy of your letter to them on 8 Oct 2010 together with correspondence from Ms R. On receipt I immediately commenced an investigation into the concerns raised relating to Ms R's medical assessment for ESA held on 22 June 2010.

In respect of the guidelines, I can confirm that consideration is given to each referral from Jobcentre Plus, to decide whether a medical assessment is required in accordance with ESA legislation. The decision to ask Ms R to attend for an assessment was made by a healthcare professional, as only those people with the most severe physical or mental restrictions are placed into the support group and do not have an assessment for ESA. (this bit refers to us asking whether the person deciding I needed a medical was in fact a health professional or an admin person).

However, as a result of our investigation I have advised Jobcentre Plus that the medical report provided on 22 June has not been completed appropriately. It should have contained a record of cognitive testing and also taken more account of the fatigue experienced by Ms R. Jobcentre Plus decide entitlement to benefit based on all available evidence and they will now consider how our investigation impacts on the benefit claim and whether a further medical assessment is required. If Ms R wishes to discuss the claim with them she can call 0845....

Our Medical Manager will provide additional training to the examining doctor to ensure all future work is in accordance with professional standards.

I sincerely apologise on behalf of Atos Healthcare for the deficiencies identified within this medical report and for upset caused to Ms Rby the delay in starting the assessment. (this relates to the TWO HOUR wait I had to endure at the medical)

Yours sincerely...."

So, good news but as the boyf says, it's disgusting that we have had to go to these lengths. The squeaky wheel gets the oil: I'm lucky I have had support to do this as in my current state I would have just given up at the first hurdle. 

Anyway, today the sun is shining and the bright red and yellow leaves are looking glorious so I think I should get off my backside and go for a little stroll.   Happy Sunday :)

Autumn

It's well and truly autumn today. First of all, the colours locally have been amazing: Tony Kirkham, head of Kew's Arboretum, said "A colourful autumn has been brought on by the copious rain at the end of the summer and by the cool, frostless nights. The warmer weather has intensified the oranges, yellows and browns that have spread around the gardens" (I read that in yesterday's Times next to a beautiful photograph that I can't find online... so I went on Google images and found this picture of Kew instead:)

Not quite as stunning, but still rather lovely, don't you agree?  As beautiful (and mild) as it was yesterday, today it's really windy, drizzly and miserable, although I quite like it from the warmth of my own home :)

The other day I had my first Fatigue Management session, which was surprisingly good. I am nearly 9 months on from my surgery and possibly even more tired than before, because I try to do too much. You know when I said "what is pacing?"?  Well I finally have a bit more info. It's actually dead simple and I could kick myself for not working it out for myself. One of the first things the OT did was to draw a graph, going up and up, to describe how we do stuff and keep going until we crash. Well it turns out I'm supposed to break everything down into small chunks. I know, sounds simple right? But I just wasn't doing it. I would do two hours solid then collapse for half an hour, which is really no good. Now I'm supposed to, say, mop the kitchen then go and sit and do NOTHING for a minute (no TV, no reading, no music, just quiet), and then if I'm up to it I can hoover half the downstairs. Then sit for a minute. Etc etc.  The sitting and doing nothing is quite strange at first, and my mind was just swirling with thoughts of things I had to do. Very hard to switch off. Now, after a day of it, I'm trying to concentrate on my breathing, and if I can't calm the mind then I imagine myself on the beach at mummy's. That seems to work better!   

I have homework to do too - planning my week, which I've tried before but she's given me different ideas - and keeping a daily journal of how tired I feel on a scale of 1 to 10 including what activities I'm doing. And then I have to do a list of things that need doing, which we'll then break down into 3 categories:

- things I like doing/want to keep doing

- things I can delegate (helloooo Claire and the boyf....)

- things that can be left undone and it won't be the end of the world. 

I shall be doing that tomorrow.  All in all, it was very productive and I'm glad I kept an open mind about it. 

Right, that's me done for the day. I must go and have a sit down.  As I'm unable to attend our Church's Bonfire Night I shall be looking out the windows tonight for any local fireworks. Beats standing around in the cold, although I will miss the company, the cup of boiling hot soup and the burger we usually have lol.  

Happy Guy Fawkes' Night and stay safe!