This is all
(sorry about all the fucks)
Okay maybe just one more
It's been over 9 years since I started my Lemtrada journey it's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Friday, 30 August 2019
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, cafés, 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.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/
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
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