Tuesday 20 December 2016

Week 30 & 31 post round 2 - Damn but I wish I'd just snapped my arm

Soft tissue injuries are a serious pain in the ..... well the arm as it happens.
I've now had 2 visits with the Physio team again and a lot of excercises to work my way through each day. The pain has dialled back a little, but it feels like tooth ache deep in my arm (you know that bone deep hurt that just doesn't ease up, can't be made more comfortable and just makes you want to chop the offending appendage off with a blunt rusty spoon) I'm sure if it had just broken properly then it would be much better now)

Sorry for no post last week, but once again we've had some heart breaking news. Karen's Dad passed away last Monday. He'd been living with that awful bloody shitbeast Dementia for the last 8 years and he had other medical problems as well on top of it. The sorrow of him and relief that at last he's at rest once again are uncomfortable bedfellows.

The funeral is this Friday up in Chesterfield so we will be heading up north a day early for our Christmas with Gareth's family in order to see Alan off and to be there for Karen and her Mum.

In the month of spiralling Vetrinarian bills, after the monster £710 Beagle 'lumpectomy' Bill earlier this month, tomorrow will bring another one this time for BamBam the 14 year old cat who has a partially falling out tooth that needs extracting (shudders at thinking about how much that will be)

Gareth's Christmas present is sorted, and some of the others are in hand. We might have actually cracked it with a few days to spare this year - except I've bought no wrapping stuff yet so unless I crack on with that people may be getting things in the various courier wrappings and plastic bags which isn't really how these things are supposed to be done.

I realised this morning that for the first time since I started Lemtrada that I'd actually forgotten to book my monthly blood tests (in fact I'm a few days overdue for them) - EEEK - completely and utterly unlike me to forget that as I'm usually chopping at the bit to find out the scores on the doors. All sorted now though I've got an appointment tomorrow at 12:10 for the ritual blood letting.

Those things aside, life is relatively uneventful and quiet. The MS remains a little shadow in the background, a 'Label' rather than an active condition. I've been a little more tired than normal but I'm putting that down to stress / bereavement and the pain medication for the arm rather than anything sinister. It could also have something to do with me barely having any wine for the last 3 weeks (again pain meds) and there's probably far more blood floating around in my alcohol system than my body is used to.

Hopefully my blood results will come back before Christmas so I can share them with you all, but to be honest I'm not betting the bank on that.

So to you all my best wishes for Christmas and the holidays (whichever you celebrate) have a great time with your friends and families. I hope the time is special and full of love for you all and please don't forget to tell those you love how special they are to you.

So to everyone reading.....

Love you loads xxxxx

Monday 5 December 2016

Round 2 Week 28 and 29 Welcome to winter and I've busted my arm

Okay this post is going to be all mixed up because it spans 2 weeks and I've not published it so there's bits from week 28 and week 29
Week 28 - BRRRRR it's getting cold in Berkshire, the car looked like a big icicle this morning when I looked out the bedroom window. Needless to say I went and started the engine and let it warm up while I got ready for work.
I'm finally the proud owner of some winter boots that are both comfortable, practical and stylish and don't offend my stuck in the 1980's fashion sense. Best of all the style name was 'Tracy' (even spelt correctly) so I'm wearing boots named after me (well probably not me personally but I'm claiming it regardless)
This week is a veritible hive of activity (well apart from yesterday when I had the day off using up my remaining annual leave before the end of the year - that was me lazing around mostly and baking my test batch of mince pies)
Tuesday week 28  -Tonight we are off to Basingstoke to see the comedian Josh Widdicombe at The Anvil which I'm hoping will leave me feeling like I spent the eavening doing situps because I've been laughing so hard.  EDIT - Josh was absolutely hillarious we spent most of the evening laughing so hard we were wiping tears from our faces.
Wednesday week 28 is 'Argentinian Experience Night' at The Tasting House in Reading - a 6 course taster menu with paired wines. EDIT - I stayed home looking after Amber-Dog after her surgury and let Gareth and Rob go to Argentinian night (I figured Rob would enjoy Gareth's company more than mine) they were dispatched with takeaway containers and told to bring me a 'doggie bag' home (the irony of the term doggie bag has only just dawned on me)
Thursday well it's late night shopping if we can work up the energy in town to go and finally get started properly on some christmas gifts. EDIT - This did not happen
I would like to say the weekend will involve some rest but it's not looking hopeful right now. EDIT Strangely it did involve rest but only because of what happend at bed time on Thursday which is described below ....

MS wise things are continuing with the uneventful theme. I missed my oxygen therapy this week and for once I really do feel the lack of it, just a little sluggish and weak, and falling asleep on the sofa in the evening a lot (well when I say falling asleep gareth describes it as 'switched off - like someone pulled the plug out and I just shut down') worth mentioning and keeping an eye on I guess. It could just be the change of seasons kicking in (along with the central heating)

Thursday week 28 - At bedtime, I fell over the end of the bed whilst trying to get my trousers off (the bottom of the legs were still tucked into my socks from when we'd walked the dogs earlier) I hit the ground with an almighty bang hands first to stop myself hurting myself and then dragged myself up and got into bed.
Friday week 28 - Damn but that fall last night really did do some serious damage to my left arm - mostly to the elbow area. A full dose of Co-Proxamol didn't even touch the sides and my whole arm and hand were swelling, so eventually I decided that it was time to go to the hospital and get it checked out properly.
Something interesting that might be useful to you if you are attending A&E (well my A&E anyway) there's a big sign up about chemotherapy type treatments which says if you have a compromised immune system you must tell them at the desk when you 'check in' (LOL like it's a hotel or a Spa or something). This is where those little cards you were issued when you had treatment come in handy, the Lemtrada one and the irradiated blood products required one.should be presented. Hopefully this results in not spending 4 hours sitting in a waiting room with people who lets face are all potential plague bearing germ monsters.
So an excrutiatingly painful set of x-rays, some twisting, turning and pulling and my engagement ring snapped the results came back. Nothing is 'broken' as in snapped, however the socket bit of the humerus bone (funny bone my arse) is squashed - something that is referred to as an impact fracture - it's a crush injury essentially. So no plaster cast, just a sling and lots of pain killers.
Oh and I can't tie my hair back because I can't lift or rotate or grip anything with my left and and it's driving me completely nuts.
As I said the weekend was really quite quiet and restrained out of necessity, Gareth had to assume all chauffering duties up until Sunday afternoon when the pain had dialled back enough for me to feel like I could drive.
It's now week 29 fortunately Saturday's oxygen treatment has assisted with my already super fast healing process - Gareth and I worked out how many times I've actually 'broken' a part of me .... this makes 17 breaks in total - 11 wrist breaks and 6 others. Strangely despite the fact that I seem to break incredibly easily, I also heal super fast and even with complicated breaks the longest I've had a cast on for is 18 days.
So anyway after all that I've now had the fracture clinic get in touch with me and they say they don't think it's an impact fracture at all, they just think it's a really nasty soft tissue injury......
I've considered going back and editing this again for the bazillionth time in the last week and you know what I really can't be arsed and my elbow / arm is starting to throb even if it isn't broken

And it still hurts like an absolute bastard .....
As always life in my world has a slightly weird lop sided camber and is 'special' in a 'now many times were you dropped as a baby' kind of way.

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 www.shift.ms. 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 - https://community-fund.aviva.co.uk/voting/project/view/16-2949 and register then use all 10 votes to help Shift.ms. 

Your help and support is much appreciated xxx