Thursday 24 November 2016

Round 2 Week 27 - Month 6 Blood Results

Wow the downward stretch to the end of my 2nd year is now in progress (downward not downhill) I'm still feeling fantastic and loving my post treatment life.
We've had a lovely and relaxing weekend with lovely dog walks, a meal relaxed evening with a lovely friend and a pretty rubbish attempt to start the Christmas shopping which only resulted in us buying things for ourselves and getting absolutely no ideas of things to get for other people - DOH.
I started this post on Monday hoping to publish my blood results in it - now it is Wednesday and I still don't have my results, apparently they're backed up at the pathology lab but I'm now starting to wonder if my blood is somewhere growing blue fur like old cheese does in the fridge.
EDIT .... YAY I've got them no new holes WOOHOO
I took Amber-dog to the vets to get her 'lumps' inspected, one of them has increased in size recently and a new one has appeared on her tummy which needed to be checked. She's now booked in for surgury next Wednesday to have all the fatty lumps removed. (2 of them are located in what I can best describe as the 'armpit' area under her front legs) they need to come off before they get so big that she is haing problems walking.
Our vets are so marvellous. When I asked could both our dogs go in for the sugery because Winston gets stressed when he's alone. They didn't look at me like I'd lost my mind or even question it they just said 'okay that's fine' and that was it. In the Basingstoke Area The Barn Vets really do rock.
I'm going to have another go at Christmas shopping this weekend - a trip into Basingstoke this time (less nice restuarant distractions but unfortnautely less nice shops too)
So here they are this months results, a little on the low increase side, however I was a little snuffly for a part of this month so it's entirely possible that they multiplied, fought the good fight and then like lemmings all collectively jumped off a cliff when they were done leaving only 4 tiny stragglers behind. I really am not in the slightest bit worried about them coming back as slowly as possible, the longer the little buggers are gone the more likely they are to forget the flavour of Myelin aqnd even if they do remember - well the longer they take to regroup the more time there is for repair and the longer the remission.

Friday 18 November 2016

Round 2 Month 6 - Blood Test Nightmare

Bearing in mind we have to do our blood and pee tests every month for 5 years post round one it's natural to get awfully protective of your veins. 5 years times monthly bloods is a whopping great 60 new holes in the vein of preferance.
As we all know the more holes that are made the more likely you are to have the veins collapse to the point where they are no longer usable for taking blood from. My preferance is the inside of my right elbow (I'm left handed so it's the other arm) and normally the lovely Judy does my tests and is a 'one stab wonder'
Today my bloods were done by someone else, I have 3 unsucessful holes in the inside of my right elbow and another which was finally sucessful in my left. 4 new holes .... that's this months tests and another 1/4 of a year of blood test holes all in one day.
With so many holes naturally there's more than the usual in bruising to go with it, so just a little 'protect your veins' notice to those of you reading, you really don't want them having to get creative and taking your bloods from strange places like your feet which I can assure you hurts like an absolute bastard or goodness me your arse or somewhere else even more personal or painful.

Wednesday 16 November 2016

Round 2 + 6 months The story so far

A little over 18 months ago my world was in chaos - I felt like every day a little more of me was 'chewed up' by MS.

  • Optic Neuritis had left me partially night blind, reading was something I could only do sometimes because the words disappeared on the page.
  • I was using a stick to stay upright when I walked because my balance was abysmal and my left leg would randomly collapse. 
  • On occasion I couldn't stay upright at all and needed a wheelchair.
  • I had become a hermit scared to be anywhere far from a bathroom for fear I couldn't hold on
  • And last but not least the only parts of me that actually had 'real' feeling were my right arm and the bit from my boobs to the top of my head (and that but had gone numb at times too
Today after rounds 1 and 2 of Lemtrada - well everything is back to normal again. I get tired, and when I do it's like everything that was amplifies what it 'was' for a little while, but I've learnt how to manage it, how to relax and do nothing and let it put itself right again.

  • My eye sight is just as rubbish as it's been all my life (thanks for that Mum and Dad)
  • I walk the dogs, go shopping, go to concerts and evens and work normally
  • Needing the bathroom isn't a terrifying prospect
  • I can feel again - almost everywhere and the bit of my left hand that's still quite numb is probably something non MS related
Life continues to be just like it was before the 'label' of MS was applied to me and the weird things that my body was doing.

All things considered life is pretty awesome, we had the training day last week for NYAS and are now just waiting for the DBS checks and other paperwork to be completed before we go into the Independent Visitor volunteering roles that will precede the Fostering application process.

I have bloods due again at the end of the week (YAY for getting stabbed and the monitoring process). I really don't like someone jabbing me with a pointy thing and taking my blood or trying to pee into the stupidly small pots they provide  
I really do look forward to having them done and getting the results. Just another reason to think I'm a little weird I suppose, but the project manager in me really does like the control element.
We are in the process of our Christmas France trip so we can top up on lovely French produce for the festive season. I guess I'm being a little optimistic in hoping I can 'complete' Christmas preparations in a single long weekend, but you've got to have hopes and aspirations and this is one of mine.
Roll on Friday and stabbing time

Year 1 in the easy to read eBook format available on Amazon with all funds donated to SHIFTMS

Tuesday 8 November 2016

Round 2 week 25 - The times they are a changing

We had a big heart to heart over the weekend before last and it looks like we will be making some big changes in our lives over the next year or so. We started trying for a family about a year after we got married but apart from a positive test which very quickly after was no longer positive nothing has ever happened. I guess I'd left it too late in life before starting and by then my body had decided it didn't want to play that game any more and retired that function.
We are now in the process for becoming Foster Carers, it's going to take about a year for it to come to fuition as we don't have kids of our own or work in environments were we work with children. We need to spend the next year doing voluntary work with children to show we aren't complete duffers, plus I guess it also shows that it's a serious commitment not just a whim and it's worth putting the time and effort into it for the long term.
I think I have a lot to offer to a 'cared for child' in that I'm patient and caring, that I have a lot to give in terms of love, stability, learning opportunities and balance. We have a meeting tonight with a lady from NYAS who are a national organsiation for befriending and mentoring 'cared for children' which preceeds our background checks and approvals, so please cross your fingers for us I really do want this to go well.
Dog walks in the evening are fun these days, it's very dark so they have flashing disco light collars so we can see them, glowing balls that Winston chases so we can't lose them, and best of all head torches that make us look like Darleks (think Dr Who in recent years with the small darlek antenna that comes out of the forehead)
It's just as well we're in the dark with no other humans around because we both look quite 'special' in all out get up. I made the mistake of wearing my head torch to go up to the shop one evening last week as the lane is very dark at night and the man in the shop laughed hysterically at my attractive headgear (well at how silly I look wearing it I guess).
Christmas is on the horizon again and we need to work out a 'cunning plan' so that we can get round and see everyone we want to see and have some time together as well. Current christmas gifts aquired count stands at 1 gift (and it's more a stocking filler if I'm completely honest than a 'gift') but we're thinking about it so that's a good thing right?
MS wise for the last week everything has been nice and 'normal' nothing unusual to report or even remotely exciting. It's all just very much quiet and uneventful - that's just the way I want MS to be - I'm vaguely aware it's there, but it's sitting quietly in the corner doing nothing more exciting than inspecting it's navel fluff.
So YAY for quiet MS and normallity - this is what it's all about xxx

Thursday 3 November 2016

SHIFTMS - Helping people with MS come together and be strong together

I've been an active member of the SHIFTMS community since I was diagnosed and my MS nurse the lovely Margaret suggested I take a look as it because as she described it

'It's the most positive place on the internet for people with MS'

She wasn't wrong at all, it's been such a fantastic experience being part of the community, Ive spoken to so many other people with MS, been for coffee and just compared all the wierd and wonderful stuff MS can do to us. It's a global community as well as a UK based Charity.

Shift is now shortlisted by Aviva to win £10,000 from their Community Fund. If they win this funding, they will be able to bring back the map on This means people using the site will be able to search for other members by location and find other people with MS people local to them, arrange meet ups and feel less alone. 


We really need the everyone to vote for us so that we can make this happen, and by voting you're helping people with MS all over the world make contact with other MS'ers in their area.

Please if you could help, would you mind voting for us (each person gets 10 votes which can all be used for SHIFTMS) if you could also share with any friends, family or colleagues? It takes 2 minutes and will really help us. 


You just need to go here - and register then use all 10 votes to help 

Your help and support is much appreciated xxx