Tuesday, 23 May 2017

1 year and 1 week post round 2 Lem girl on tour part 2

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

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

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

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