Thursday, 3 October 2019

4 yrs 4mths 2 wks - ARGH ..... 3 weeks no updates BAD TRACY


I’ve had a couple of migraines over the course of the last couple of weeks (hence me missing updating the blog last week) which hasn’t been fun. I get them when I’ve been stressed for an extended period of time and to be fair with the recent scare for me and Amber’s stroke, I think it’s all been a bit much. There’s also an outside possibility that it could be new glasses related so I’m experimenting a little with when I wear them.
The weekend birthday celebrations with lovely Polish food were awesome, we only knew 2 people attending, but by the end of the evening we knew everyone and they were lovely people.
The dogs are doing great (it’s Bella the Whoppets 2nd birthday today – doggie birthday cake later) and Amber whilst still looking a little like she’s been on the Gin is loving her walks and her food and smiling.
The Rugby world cup has kicked off and I’m looking forward to lots of the matches, hopefully the England Team will be better this time (we didn’t make it out of the group stage in the last world cup which was here in the UK L) the opening game against Tonga was a good start.
Oh dear and another week has passed, and now I’ve missed 2 weeks of updates. I’m really sorry about that. I even missed my monthly bloods after turning the alarm off with a migraine in progress.
Things are getting interesting in our house, after 6 years Gareth is moving on to a new role which he’s very excited about. I’m still pinning my hopes of early retirement on winning the euro millions and becoming an animal rescuer.
Tomorrow it will be 6 years since I lost my mum, my head is trying to play the ‘time lapse’ thing where as the minutes and hours tick by I remember everything that happened in the lead up and afterwards, but I’m remembering the good things to drown it out. So far so good.
Oops … now it’s the day after tomorrow.
Yesterday was okay, a teary read through my Facebook memories and then just getting on with it. The time lapse stopped on Tuesday and left me alone.  A couple of days of takeaways have done nothing positive for me other than let me chill out and relax a little.
The weekend is looming, I’m waiting for the postman to deliver me a nice cheque which I have plans for (that work that Gareth promised to do in our en-suite back in January hasn’t started yet and I did the ‘nag at 6 months’ thing and it didn’t work either so it’s time to call in a professional) and I’m thoroughly over having to shower in the other bathroom down the hall each day.
So that’s all really life is good and normal and MS is an afterthought – the way it should be xx

EDIT and sadly Gareths 'baking bug' seems to have died of neglect :-(

Wednesday, 11 September 2019

4yrs 3mths 3wks - Men who Bake have more sex appeal

Amber did have another stroke in the early hours of last Thursday morning, this one has been a big one and she has spent the weekend trying to learn how to walk again. It’s taking longer this time for her to pull out of it. After wondering what we would do over the weekend it turned out that it was mostly about the dogs. It was Saturday afternoon before we saw her wonderful Beagle smile again. It’s so hard to watch but she’s recovered from the others so we have to give her time and as long as she is happy then we will keep going. It’s that open how long is too long thing though.

Gareth has spent the weekend making loafs of bread. We had an ‘accidental loaf’ last week when making pizza dough, I think Gareth accidentally made the ‘Serves 12’ quantity so he shaped the leftovers into a loaf and threw it in the oven. Out popped a perfectly formed, beautiful loaf …….. And it was an accident. This prompted 2 further ‘deliberate loafs’ and predictably they were again perfectly formed, perfectly baked and delicious …….
I have a ‘patchy’ history with bread making there has been a single lovely focaccia and quite a few okay ones as well as some absolutely disastrous sour dough attempts. I don’t include things like Wheaten Bread or Soda Farls in my bread disasters they are nice and straight forward and I can make them well (although I now suspect Gareth might make them far better than I can). Gareth’s adventures in bread making for next weekend are already planned and I’ve already started ribbing him about him applying for Great British Bake Off next year.

I feel no anxiety that he is great at baking and I am crap at it, the results are lovely and tasty and doing bugger all to help with me losing some chub and get into better shape. I’ve always said if we could apply as a couple we’d make a half decent MasterChef contestant.
We also did a lot of what I call ‘adulting’ – that grown up responsible thing, cleaning the house, vanquishing the laundry basket, mowing the grass and stuff. Being this organised doesn’t come naturally to either of us. We’re both pretty resistant to being grown up so it takes quite a bit of effort to motivate ourselves into behaviours like this and it’s usually a pretty grim experience where we’re doing it because we have to not because we want to and it makes us both grumpy. This weekend we did what we needed to and it was okay especially when I called time on ‘Adulting’ and said it was time to stop.

(Side note – for me, Adulting doesn’t include cooking – Sunday dinner of Roast Chicken with potato broad beans and gravy was absolutely epic and not a ‘chore’ at all it was enjoyable and resulted in an awesome meal)
We have a friends birthday coming up this weekend, an introduction to the local Polish community and food which we are very much looking forward to, and there is a Gin and Rum Festival in Reading on Friday which I’m trying to convince Gareth he should drop me off at and come and pick me up later (he thinks I’m joking but I’m taking his ‘yeah alright’ response as agreement that he’s providing a gin and rum drinkers taxi serviceJ)

One last thing, the dog training, it’s working ….. it’s such a short amount of time, but we’re seeing improvement and more confidence from Winston. He’s not reacting to things as much and he’s just relaxing. Odd to think that loving him so much and wanting to be affectionate all the time is actually viewed as weakness by him and make him think he needs to be in charge. The book is by the trainer Nigel Reed if it will help, I’m listening to the Audible version. There’s a pretty extensive YouTube archive of him that shows how he trains.
Ohhhh ohhh and anotherone last thing ….. if you like Gin you have to try Aber Falls ……. The Welsh are getting seriously good at making some very fine spirits and Liquers. I’m blaming Amazon Treasure Truck for this recommendation – I got text last week with the Orange Marmalade was on offer. Gareth was working from home so he ordered and collected it later that day. Oh my …… a small glass, an ice cube and I was in heaven. I then discovered that they also do a salted toffee and a coffee and chocolate so it would have been rude not to taste test them. They’re lovely, just an ice cube with them for me, they don’t need more although I’m sure if you wanted to they’d be lovely.

So a significantly more positive post from me this week hope you’re well xxx

Thursday, 5 September 2019

4yrs 3mths 1wk - Reflections and blood results

The morning after the weeks before

This week has felt really strange, after the stress and worry of the possibility of bad things, the relief of the bad things being counted out, holiday and countless other minor things I’ve felt a little directionless as to what I should be doing.
If I’m not fighting something, organising something or avoiding something, well what should I actually be doing? The possibilities are endless and randomly my mind is blank apart from the little voice in my head saying ‘there’s a pile of clean laundry at home that needs to be put away’ ….. Hardly exciting is it?

It’s mid week, the weekend is coming and again there’s a blank space, nothing planned, just a space where ‘stuff’ can happen but I genuinely have no idea what ‘stuff’ that will be and no ideas as to what I even want to do. There are some blocks to what is feasible while we are still working with Winston on his insecurity, but we are actually getting somewhere with that now. Gareth and I are both applying some good practice to our interactions with all the dogs and it seems to be paying dividends quickly.
So I guess that’s the weekend plan – going over repeatedly the lessons with the dogs reinforcing over and over again the lessons that need to be learnt. I’m sure by the end of the weekend we’re going to be quite mad but the dogs I’m sure will be much happy with their humans. I’ll update on that as we go.

It’s also getting to that stage where I should probably start thinking about the ‘C’ word – not the bad health one, Christmas ….. good grief how on earth did it get round to even close to that time of year again. I’ve said it before but goodness knows time seems to speed up the older you get, birthdays and Christmas’s feel like they happen so much closer together.
I guess it doesn’t help that having been so crap at planning in the past I’m trying harder to be less crap by starting the preparation earlier, this is adding to the ‘things coming around faster’ feeling because I’m ‘getting into it’ sooner. I’m really not helping myself am I LOL

Amber couldn’t get up this morning, she had stronger tremors that she’s had recently and couldn’t get up. Gareth had to get up and carry her down the stairs. By the time she was downstairs she seemed to have got herself together and wobbled off down the garden to get things done. I’ll keep an eye on her and see how she does, but it’s always there in my head that her time seems to be getting short. This is probably reinforced by having overheard our neighbour find one of their rabbits had passed away in the hutch during the day – simply awful to hear how heartbroken they were and the little voice in my head saying ‘you’re next’.
Perhaps that’s another reason why I feel a little directionless right now – I’m waiting for the hammer to fall. It seems like a long time since there’s been nothing to do except just live my life and without something to focus on perhaps I just genuinely don’t have a clue how to just ‘do’ life these days.

That sounds quite depressing, but honestly it isn’t that way at all. I’m enjoying life and love and happiness.  Bob’s in the car, his battery has been flat since last weekend and I haven’t needed him for anything I’ve wanted to do. That the training is paying dividends is rewarding and it gives me hope that we can have the dogs out with us for more positive experiences and worry less when we want to go out. Gareth and I are enjoying our time together and it’s stress free and happy. I’m looking forward to the end of the year and seeing our family and catching up with everyone and hoping that I get gift choices right for everyone and that we have a lovely time together.
Perhaps it’s just that I’m not used to normal anymore and need to learn how to do ‘normal’ again.

I’m not always focused on how to ‘live my MS life’ anymore. Yes I have MS, that’s not going to change any time soon and although I wish there was a magic ‘fix it’ button it doesn’t dictate things these days so it’s not overly intrusive. It isn’t ‘me’ though.
Its getting harder to update the blog simply because there’s no MS news, it just is …… I feel like this has become a strange online  diary of a person who happens to have MS and less helpful for people reading it. I wonder what I’m actually contributing these days other than an enormous feeling of wellbeing to those reading that at least their lives aren’t as mundane as mine is and genuinely wonder why people read it (unless it’s helping with insomnia on which case enjoy your snooze because this one is quite likely to send you into  a deep sleep)

Anyway in other news …. Monthly bloods have reflected something that Dr N pointed out to me about those blood results being too high. Both he and my GP had said that the root cause could be related to smoking. His blood results and my most recent monthly ones both show an improvement pattern which reflects their comments. Having not smoked (much) before tests one of the readings has dropped (barely) into the normal range and the other is coming back inline. My thyroid has dropped into the low end, but I suspect that might have something to do with missing  dose of meds while I was on holiday – it only takes one missed dose for it to nosedive and 2-3 weeks to get it back to where it should be.
So here we go a little later than normal because I was away, here are my August results.

Stay well and enjoy life xxx

Tuesday, 27 August 2019

4yrs 3mths - post holiday and an unexpected concussion


Yup you read that right - Mrs Accident prone had yet another self-inflicted injury to deal with.

This one was a 'coming back from the bathroom in the dark, slipping as I tried to sit down on the bed, missing and then using my face as a brake by smashing it into the bedside table.

I swear one of these days I'm going to end up doing something 'unfixable' in one of these incidents.

Fortunately as we have established over the last few years of my ramblings, my head seems to be ‘well padded’ and ‘quite bouncy’ given the number of times I’ve ended up bouncing off it.

Gareth did ask that I try to limit the number of times I do this to myself as he’s starting to expect people to be asking awkward things like ‘Are you sure that she did that to herself, walked into a door you say …….’ *whistles*. In his position I’d be similarly concerned, however so many people I know have actually witnessed my clumsiness and the injuries that result from it that Gareth is fairly safe.

Anyway what I’m taking an awfully long time to get round to saying is that the face smash, the resulting shock and me shaking like a shitting dog for a couple of hours while Gareth kept asking should he call me an ambulance – well we slept through the alarms on Friday morning and I missed my appointment with the Haematologist …… this is now rescheduled for this Friday morning so no news on that front yet apart from what I've previously shared about all the scary words coming back as negative.

Gareth ended up driving to Watchet after it became quite clear I had a minor concussion and under no circumstances should I be behind the wheel of the car whilst feeling very sick and dizzy.

The house we had rented was absolutely awesome, so comfortable, well done, even the welcome package with drinks and biscuits for the tired traveller. The beds were huge and comfortable and it was everything we would have hoped for with a secure garden for the dogs. We were a couple of minutes’ walk from pretty much everything in Watchet, umpteen pubs and places to eat, everything was dog friendly, shops, caf├ęs, pubs even the museum. It felt like going back in time – in a good way – relaxed, a slower more sociable way of life where people talk to each other in person, over a drink. We sang sea shanty’s and ate ice cream and it was just so bloody lovely that I could see myself living there.

So if anyone needs a lovely relaxing time by the sea I can highly recommend this place.

https://holidaycottagewatchetsomerset.co.uk/

We made it home in good time on Friday with the long weekend ahead of us, so pretty epic all things considered. Sadly we didn’t do anything fun or exciting, we just chilled and relaxed for 3 days and kept reminding ourselves to stay in ‘Watchet mindset’

Back at work today, it’s nice to see everyone and catch up, but I’d rather be beside the sea.

Hope you’re well xxx

Thursday, 15 August 2019

4yrs, 2 months and 2 weeks - how to wear yourself out so you can relax

Ouch … sorry I’ve just realised I didn’t post an update last week. I’d love to say it’s because life has been so great and exciting that I didn’t find the time, but sadly that would not be true.  It’s all been rather meh’ if I’m honest, after the good news that the bloods so far haven’t shown anything cancer or leukaemia related it’s all be a whole lot of waiting for this Friday when I go back to see Dr N before we make our way down to Watchett for our holiday with the dogs and Aunty Kathy.

We had visitors over the weekend with awesome BBQ food enjoyed by all, but oh my did we drink too much – I mean way too much, I had the hangover from hell and felt ill all day on Sunday, sleeping most of it and mentally I’ve signed the pledge (for a little while anyway – until next weekend probably)
We’ve taken Winston off the Prozac that the vets put him, it seemed to completely destroy his confidence in pretty much everything and whilst he wasn’t barking himself sick he would sit and shake like a leaf and whimper when we wanted to leave the house (I’ll never forgive those previous tenants next door who have made him afraid of being alone in his own home – absolute bastards.

And it’s now Thursday – I started this in Monday, I go away tomorrow – I might even have clothes to wear if the sunshine holds and the monsoons from earlier this week don’t return. I have to pick up cat food on the way home for Murphy so that Michelle has enough for the week, make sure instructions are all written up and that we have everything sorted for the morning. I’ve not planned this very well at all.
It’s just as well really that we are only in the UK because I’ve not prepared at all, I had a stye come up in my eye on Tuesday and it’s only jus draining for a while there I literally felt like I’d been punched in the face from it. Yet more eye drops every 2 hours this time 24 hours a day for 36 hours before I could come down to every 4 hours while I’m awake.

And I’m tired, good grief I am tired.
I know it’s stressing about tomorrow (even though I’m convinced it’s going to be fine) the weekend didn’t help overdoing things, I spent Wednesday night getting up and trekking to the fridge for eye drops eery 2 hours, and I haven’t packed or prepared properly at all. Patterns – that’s all it is, one thing leads to another and another and my body just throws up the white flag and says no.

Bloods this month will be later than planned since I’m not coming back a day early from my holiday to get stabbed, they will be fine though.
I’m sorry this is a rubbish post, but I’m tired and stressed getting ready to relax (yes that sounds ridiculous I know)

Hopefully a better post next week from holibobs xxx

Thursday, 1 August 2019

4rs 2 month blood results and some awesome news


The wedding at the weekend was beautiful, Mr and Mrs Ward had a perfect day she looked beautiful and he didn’t look too shabby either J A wonderful celebration of their love and ties to the Royal Navy.
A little shopping, some lurking and relaxing and sadly the weekend was done, it was Monday again and suddenly it’s time to go back to work again (for 1 day before a couple of days off for our wedding anniversary)

I had a call from the doctors on Monday morning saying that they would like to talk to me about how the MS is going (apparently it’s un-nerving them somewhat that they see me for other stuff but apart from a monthly ‘stabbing’ the MS thing is awfully quiet). Rather than take up an appointment slot, Dr B is giving me a call on Friday for a chat.
I’ll have news for him that I received on Tuesday – BIG NEWS (unless his post has reached him – my copy arrived by email from the secretary the day it was produced) Below is the content of the letter regarding the tests the haematologist has done.

29 July 2019
Dear Miss Doust

I have reviewed your blood results which were performed following the previous clinic consultation.  The full blood count was entirely unremarkable with normal levels of neutrophils and lymphocyte counts.  The blood results sent for genetic markers to rule out an underlying cancer of the white cells including JAK-2 V617F and BCR ABL have both come back negative.  The ultrasound scan of the abdomen was entirely unremarkable.
I can chat with you about these results and the rest of the investigations when I see you in clinic next week.

Yours sincerely
Dr N

Laughing at the 'Miss' on the letter ...

There has never been a time in my life where I’ve been over the moon to be described as ‘entirely unremarkable’ TWICE and the double negative on the genetic tests is brilliant. This really was the Best Anniversary present ever. We had a wonderful meal at Menu Gordon Jones in Bath – I have to say that was simply stunning and everything we had hoped it would be.

http://menugordonjones.co.uk/
A couple of days at home with the dogs mid week completely blew both mine and Gareth’s minds, we kept thinking it was the weekend, looking at diaries for what we were supposed to be doing on Monday when actually we needed to be looking at Thursday. Confusion as to why Saturday Kitchen wasn’t on the TV, that the shops were open after 4pm.

I’m back in the office today and working from sofa again tomorrow and then the weekend realy will be here J
Anyway this month’s bloods are in, less concerned about the monocytes and neutrophils now that the big C and the L word look to be off the table.

Hope everyone is staying cool in the warm weather xxx