Still here in the Portuguese sunshine and not having a problem with the heat at all, I'm even looking like I might have a bit of a tan .... or th freckles have just gotten so big they've joined up.
Not really much to report apart from that I'm doing really great and that I'd never really considered the description for the year after the year that treatment completed ..... so I'm trying this one on for size this week ... suggestions welcome xxx
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
Tuesday 23 May 2017
Friday 19 May 2017
Week 52 ... all done then - ola from Portugal
I'm sitting here in the sunshine with a view of the sea enjoying a glass of freshly squeezed orange juice and contemplating how little I can get away with doing today.
Phillipa and I made it here safely, we have a hire car which whilst being new and shiny really is a a PoS with absolutely no OOMFF ... it couldn't pull the skin off a rice pudding if it was going downhill with a stiff wind behind it.
There appears to be a little stray cat who's attached itself to the occupants of this apartment, we saw the cleaner throw a stone at it last night (I wanted to punch the evil cow) which could explain why the poor thing has a leg injury ..... I'm seriously contemplating putting it in a box and taking it to the vet in Guia for treatment - I'm slightly worried that if I do that I'll get so attached that it would end up being an imigrant cat into the UK with me.
MS wise I'm doing fine, the excertion of suitcase manouvers through Gatwick and Faro airports took it's toll on the first couple of days but it's all evened itself out now.
Gareth is 'Home Alone' (well as alone as you can get with 2 dogs, 2 cats and his parents in for a visit) he's had to look after poor winston who had a run in with a toy posessive Boxer dog who bit him and scared the living shit out of us all.
It feels really odd to be away from him, we've been apart plenty of times, especially back when he was in the army and on excercise or on tour, but it's always been him going away rather than me.....
So despite being on holiday, Winston getting hurt and cat rescuing, well there's really not a lot to tell
Hopw you are all well xxxx
Phillipa and I made it here safely, we have a hire car which whilst being new and shiny really is a a PoS with absolutely no OOMFF ... it couldn't pull the skin off a rice pudding if it was going downhill with a stiff wind behind it.
There appears to be a little stray cat who's attached itself to the occupants of this apartment, we saw the cleaner throw a stone at it last night (I wanted to punch the evil cow) which could explain why the poor thing has a leg injury ..... I'm seriously contemplating putting it in a box and taking it to the vet in Guia for treatment - I'm slightly worried that if I do that I'll get so attached that it would end up being an imigrant cat into the UK with me.
MS wise I'm doing fine, the excertion of suitcase manouvers through Gatwick and Faro airports took it's toll on the first couple of days but it's all evened itself out now.
Gareth is 'Home Alone' (well as alone as you can get with 2 dogs, 2 cats and his parents in for a visit) he's had to look after poor winston who had a run in with a toy posessive Boxer dog who bit him and scared the living shit out of us all.
It feels really odd to be away from him, we've been apart plenty of times, especially back when he was in the army and on excercise or on tour, but it's always been him going away rather than me.....
So despite being on holiday, Winston getting hurt and cat rescuing, well there's really not a lot to tell
Hopw you are all well xxxx
Monday 8 May 2017
R2Wk50 - Sunshine, Oxygen frustration and Winston-Dog is having a melt down
10 days today I will officially be a year post round 2
EEEK
I managed to get in a cheeky Oxygen Treatment last Thursday
which made life a million times better. I guess I need to have learnt my lesson
that it’s still doing me a lot of good. Although the ‘soup head’ thing is a
thing of the past, it is clearly helping a lot with my energy and recovery time
and last week I paid the price for a few weeks off with bank holiday weekend
and ‘life’.
The weekend was lovely with dog walks and relaxation and the
first birthday party and BBQ of my friends’ beautiful baby boy.
I however didn’t get to double up with my weekend treatment
as I was ‘told’ I’d been moved to accommodate someone who was late getting
their treatment and unfortunately my plans for later in the day simply didn’t
allow for that. Gareth was even more pee’d off about it than I was, and I was
as mad as a wet hen. Apparently it is not ‘reasonable’ of me to book a timeslot
and actually expect it to happen at that time …. GRRR. I now have another top
up booked for tomorrow night in the chair which should set me straight again.
A week today I’m off to sunny Portugal for 10 days with my
friend so I’ll apologise in advance if services are somewhat ‘interrupted’
while I’m gone. There will be WiFi and I will have a laptop with me (hopefully
no break-in this time) so I will ‘try’ to update …… but I’m not making any
promises LOL
Gareth’s taking next week off work as Winston Dog seems to
have developed a sudden and irrational separation anxiety and has taken to
sitting by the door shaking when Gareth tries to leave for work.
Life goes on, lots of love and germ free hugs, and hope the
sun is shining wherever you are xxx
Thursday 4 May 2017
Wednesday 3 May 2017
R2Wk49 - oopsies I broke myself - but it was fun
A cautionary tale …….
It just goes to show no matter how many times you tell
yourself that you’ve got all this MS / Lemtrada stuff sussed, there are still
some lessons which you need to learn again. This week I’m learning that I am
NOT Wonder Woman, that I do not have limitless energy and what when I overdo
things I’m going to pay the price for it.
The Wokingham Fayre on Monday was my ‘lesson’ – I simply had
not anticipated how much walking I would do during the day. As a result, I’m
probably best described as ‘broken’.
I’ve talked a lot in the past about how when I overdo things
it’s like the MS all comes rushing back in one big wave of pseudo-symptoms. It’s
usually something I’ve planned for in advance and prepared for lots of rest to
recuperate and then it all goes back to normal.
This time no planning was done. My legs are numb, weak and
very wobbly. My head is ‘soupy’ my eyes are on the frisk and I have tremors
throughout my body. It would be safer if I was using my walking stick, but to
be honest with the tremors I probably couldn’t hold it let alone put weight
through it – and then there’s the little matter of me actually having no idea
where the damn thing is – it’s been a couple of years since I needed it and it
seems to have ‘vanished’ LOL
I had to work from home yesterday because I didn’t feel safe
to drive, I’m back in the office today but probably shouldn’t be, and it’s all
a bit crap.
The fayre however was lovely we met up with friends caught
up with each other and to be honest I’d do it all again (although I’d not be
quite so ambitious about how many ‘laps of Wokingham’ I would do LOL
It’s going to take a couple more days of taking it easy
before all systems return to normal, and I’m definitely going for a nice big
oxygen top up on Saturday which should do the trick nicely, I’ve also booked in
for a midweek ‘top up’ tomorrow afternoon so 2 in 3 days should set me straight
again – actually it’s been weeks since I had an oxygen treatment so that could
be a contributing factor as to why it’s hit me so hard …….
In other news ….
We’ve finally got a builder who is going to sort out our
150+ year old stairs at home so I can stop falling down them and once it’s done
we can proceed with the home inspection for the fostering application. YAY
In 12 days I’m off to Portugal for 10 days of sunshine and
rest,
This isn’t meant to dishearten anyone or imply that there’s
something wrong other than me being an idiot and bringing this on myself
because I didn’t foresee what would happen.
It’s more of a gentle reminder to us all that whilst we may
feel on top of the world overdoing things can feel like you’re relapsing and to
take care of ourselves.
So I’ve learnt my lesson (again) I wonder how long I’ll
remember it for this time xxx
Tuesday 2 May 2017
R2M12 - End of Year 2 blood results
So here they are side by side, Last April and this year …..
the last bloods before round 2 and this year’s where the future just spreads
out in front of me with no treatments unless MS comes back (and then I’ll kick
it’s arse again)
My lymphocytes are still low which makes me very happy, a
fully functioning T&B cell Lymphocyte function in my opinion is highly
over-rated – the little bastards seem to cause nothing but problems.
My Chrome-Hippo’s are a little high as I’ve had an abscess
in my mouth so there’s been a little battle going on with that.
All things being equal, life is awesome
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