Thursday, 30 June 2016

Round 2 Week 6 almost done and my weird scarf fetish


Apologies for the late update this week, my laptop seems to be having a strop about loading my post's and draft's and I've started this 3 times and been unable to go back and edit it so this is attempt number 4 - must publish before I leave the page this time.
Once again time seems to be flying by. I guess because so much has been happening at home and in the UK both politically and in Sport.

Today's update comes on the back of a strange old week, the woeful England performance and being publicly spanked by Iceland in the Euros. 52% of the UK voted to leave the Euro throwing the whole British political system into the shredder, our 2 main parties are now looking for a new leader (although one refuses to stand down despite 75% of his party voting for no confidence)
I've spent the whole week working from our Bracknell office doing a handover with a colleague who's leaving us to go to new pastures. This has made a nice change and dramatically reduced my weekly mileage and travel times (YAY saved spoons and saved money)
Gareth and I had a 'big kids' evening last night and went to watch 'The Secret Life Of Pets' in 3D at an evening 'grown up's showing' a the cinema. We were both in gales of laughter a the behaviour of the dogs and cats, we could see so much of our own pets behaviour in them. I indulged in a 3 scoop Ben and Jerry's sundae as my movie snack (sorry fitbit and diet) but it was so lovely.
MS wise / Lemtrada update:
I had an interesting revelation whilst at work earlier this week. Someone I don't actually know who followed me round parts of the building commented on my 'odd behaviour'.
She had been in he bathroom at the same time as me and watched fascinated as I'd washed and dried my hands then applied anti bac before then opening the door to leave using my scarf as a barrier between my hand and the door. I then proceeded to repeat the action through the other 4 doors between the bathroom and my desk. The lady thought it was completely weird that I'd navigated the whole building without 'actually' touching anything at all.
I explained that it wasn't something I'd actively 'decided to do' and that it was apparently an unconscious thing given my currently compromised immune system; and yes I probably looked like a complete weirdo.
Cue the explanation about having MS (sad face and condolences were in evidence) then I explained the treatment, how it worked, why I chose to have it early and what it had done for me (shocked face and slightly stunned response) followed by 'I've got this friend with MS .... would you talk to them please? I'll be going for coffee with an MS stranger again soon.
I can't say 'scarfing' has been a conscious thing to do since treatment, but last night at the cinema, I didn't wear a scarf yet I repeated the 'protection' thing by sliding my hands up into the sleeves of my jacket then opening doors with a jacket barrier.
I remember being told the old 'results of testing peanuts on a bar' thing many years ago. Scientists tested peanuts and snacks left on bars and the results were horrifying to me. There were multiple types of various bodily 'substances' from multiple 'donor's on them - how sickening is that? I've been a bit strange since hearing that. I won't hold handrails on stairs or escalators always push a door somewhere other than where the 'hand plate' is. I certainly won't touch bar snacks left out for the masses EEEK. I'd never noticed it has escalated to 'I never touch anything if I have a choice' .
Perhaps it's just an extension of my already twitchy OCD about these things, but it's certainly worth reporting as a 'keeping hygienic' tip since I generally don't 'catch stuff'.
It's certainly another justification for the enormous quantity of what I refer to as 'scarf porn' that I own - some women buy handbags, others buy shoes - me I buy pretty scarfs, shawls and pashmina's.
Anyway my apologies to those who are having a hard time post treatment or before but as usual I'm doing disgustingly well, all improvements remain in place and I'm loving life even if some of my behaviours make people think I'm really quite odd.

Thursday, 23 June 2016

Round 2 Month 1 bloods

Here they are: the scores on the doors for round 2 month 1.
I've hidden some of the 'in between months' so it shows the comparison to month 1 post round 1 and the last couple of tests before treatment.
A slightly higher recovery over month 1 this time than last and the Eosinophils are a little low. A quick google of 'causes of low Eosinophils' responded with a straight forward this can be a result of high dose steroids so I'm not overly concerned. I've emailed them off to my Neurologist and MS Nurse so they can see how it compares and I know they'll come back to me if they think otherwise.
All going great guns for round 2 so far. All improvements are holding steady and no MS type stuff to report.


Monday, 20 June 2016

Round 2 Mid week 5 - Poking yourself in they eye is a REALLY bad idea

First things first I'll explain the update title.
I've scratched my right eyeball (AGAIN) I'm pretty sure that it's self inflicted and that I scratched it whilst removing my contact lenses on Wednesday night last week. Unfortunately since my vanity doesn't generally allow me out in public wearing classes I then continued wearing my contacts for another 2 days before I woke up Saturday morning unable to open my very swollen eye and in agony.
A nice combination dose of Ibuprofen a paracetamol helped with the pain and light sensitivity but contact lenses are definitely out for a good while. We had a night out in Reading on Saturday for the lovely Kate's birthday (she'd hate me calling her that and say she's big and tough and mean - but hey she might buy the book of the first year but she's never going to read it so tough luck girl you're lovely). Playing pool with a damaged eye wasn't great (it never is but this time I had an excuse not just - so sorry I'm crap at this) and I did get a few 'looks like you've walked into a door Trace' nudge nudge and wink wink at Gareth sat opposite type comments.
Getting home at 3am wouldn't have been too bad - had I been sensible and gone to bed. Staying up until 5am when it was daylight however was a really stupid thing to do. Sunday was a complete write off, I sat on the sofa all day with only brief movements to the bathroom and the kettle. Fortunately I'd planned Sunday dinner in advance and had the slow cooked pulled Feather Steak ready to just switch on and walk away from.
Apart from a hangover and being very tired Sunday was also Fathers Day. Yet another year when it hit really hard that my Dad is no longer with us. I hope he's up there somewhere looking down on me with Mum and Ian and there's a chorus of 'you stupid bloody woman' being yelled in my direction.
Strangely the thing I miss most is the withering 'good grief how could my child be so dumb / clumsy / stupid / silly' look along with 'you stupid bloody woman' muttered under his breath. Well that and every time my hair is wet and it goes all curly everywhere my Dad still had hair when he died - it's still completely straight on the top where he was balding - should have checked the small print when he said he'd leave me his curls!!! It's weird the things that stick with you - I suppose I should just be grateful the hair on the to of MY head is still in place :-)
Thursday would have been my Mum's birthday so that's going to hurt, Friday is a year since my little brother's funeral last year. I'll apologise in advance if I'm somewhat morose and introspective this week. I feel like my whole world is crumbling to pieces again. I know it's only temporary I just need to get through the week and it will be okay (if I wasn't playing sleep catch up it would probably be easier). Right now there seems to be a lead weight in my chest and my heart hurts, I cry at anything that reminds me of them all.


So ....... I back in work this morning, it's officially the first day of British Summer Time and the fickle British weather has decided that to honour this Berkshire needs a Monsoon. It's been throwing it down all day and shows no sign of letting up.
I've called up this morning for my blood results from Friday's monthly stabbing and they're back but haven't been reviewed by my Doctor yet so they can't tell me them - hilarious really as Dr F gets me to do interviews with all the Baby Dr's who come to the surgery to teach them about the treatment I've had (after I taught him about it too)


Hopefully blood results later :-)



Tuesday, 14 June 2016

Round 2 week 4 I'm cool and 5lb's lighter

I'm officially in love with the FitBit it is absolutely my favourite toy right now. This is mostly because in the week since I bought it I've lost 5lb's in weight (the previous 3 weeks of  Weight Watchers were 5lb's in total)
The dogs have had their evening walk every day this week to the pub and the humans can have a beer because we've burnt the calories on the walk too. It makes changing your lifestyle a little less hard when you can have a little of what you fancy.
My body temperature regulation seems to now be evening out, I can now wear 'normal' shoes not just flip flops. the itchies seem to have gone now and my sleep remains 'normal' no more waking up if there is the slightest sound within a half mile radius of the house.
All things considered post round 2 has been much less bother than post round 1. I suspect that this has a lot to do with the knowledge I've acquired along the way. It's also helped that I finally worked out that a lot of what I experienced was down to the vile steroids rather than Lemtrada. (you live and learn). I do not have fatigue, but I do get tired and sometimes nod off on the sofa in the evening for a while with the dogs. My walking remains pretty great, no balance or foot drop issues and using that handy FitBit I can see that actually my heart rate is better now I'm doing much more regular exercise.
I'm continuing to work full time, I am at my usual desk with my hand bottles of Anti-bacterial gel for both my use and everyone who comes over to me to use as well. We go out for meals
The bee keeper has been and removed the bird box and the swarm that had taken up residence in it, they have been relocated into a hedgerow on the edge of a cow field in Mattingly to live out their little bee lives happily.
I'm quite happily enjoying the Euro's although I'm not holding out much hope for England reaching very far. There has been so many problems in France with badly behaved fans on pretty much every side. I don't understand why the need to get drunk, behave in an appalling manner and fight seems to go hand in hand with Football. For me it certainly means that I will NEVER be attending an international match on foreign soil anywhere.
I had an interesting phone call this morning about the 2nd accident I had in January. It would appear the saga of 'Admiral Insurance hired this car on my behalf and it is covered by their blanket insurance policy is still rumbling on. It would appear the motor cyclist is now claiming on his insurance for 'The damage to his bike'. I took lots of photographs of the damage to the hire car and the clearly undamaged bike at the scene. They have now been sent on to the people dealing with the claim - I will be interested to see what comes of it. I see him doing exactly the same thing every day, driving down the wrong side of the road to get past the queues and on a couple of occasions I've seen him nearly get hit again by oncoming cars or just people trying to pull onto their driveways - I guess some people just don't want to learn.


All things considered life remains pretty awesome. xxx


Year 1 now available as an eBook at https://www.amazon.co.uk/dp/B01GE1V00M

Thursday, 9 June 2016

Round 2 Week 3 - Feeling HOT HOT HOT

YAY for steroid sweats - NOT
I can't even be a grumpy cow about it now my mood swings (again thank you steroids) have evened out. It just 'is' and I need to keep well ventilated - even my flip flops are off and I'm sitting with bare feet in the office.
We had massive storms here in Berkshire this week. On Tuesday the 'cowardly girl' abandoned the conservatory and hid in the lounge with the dogs because I was convinced the lightening would strike the conservatory and I'd be showered in glass kind of scared. Usually I'm a great lover of storms, I'll go out into a covered area and watch and film the thunder and lightening but this one was truly terrifying.
In between the storms it's been lovely, a typical British summer really.
According to my shiny new FitBit in the last 48 hours I've managed to walk a whopping great 12km. I'm working really hard to meet my 10,000 steps a day target and so far I'm managing it. My diet has been great and I'm starting to lose weight and get fit all at the same time. I feel very motivated and pleased that I'm not just sticking to the plan, but also feeling better for it too.
It probably helps that part of the plan is a nightly walk to the pub with Gareth and the dogs! It's really important that they get the necessary time on the lead in public places where there are distractions like bikes, other dogs, kids on scooters and 'new humans'. The walk to and from the pub is 1k in each direction with the added bonus that we can have a drink in the beer garden and socialise whilst reinforcing the training.
The sleep monitoring on the wrist band also says I'm sleeping properly now (YAY) which I knew without the band but it's nice to see it formally confirmed by the technology.
We've walked the dogs to the pub and back every day this week and the first time I did it wearing the FitBit my heart rate just walking at a reasonable speed shot up to 145bpm ..... by last night it was down to 116bpm which was actually lower than Gareth's and stayed in the 'fat burning zone' rather than cardio (which will come later) so I feel a challenge coming on!
I'm slightly nervous about how the cycling over the weekend might work out with the cycle up to next village and back, I haven't checked out the distance but I think it's about 3.5 to 4 miles each way. Driving it with the 'instant fuel consumption' display in he car it seems to be relatively flat which is an absolute must for the first time in a long time. The project manager in me already has the 'disaster recovery planning' done - If I'm completely wrecked I'll just send Gareth back on his bike to go and get my car and come rescue me and the bike :-) (while I have a cold drink and cool down).
Oxygen therapy and getting my smashed iPhone screen replaced are the only other plans for the weekend apart from more walking and training for the pups - oops - more trips to the pub then - happy days

Monday, 6 June 2016

17 days post round 2

The sun is shining and it's a beautiful day. I was up a little earlier this morning before work (thanks to Gareth I'd been hitting snooze in my sleep again) We took the dogs for their early morning constitutional and then I played with the traffic on the M4 for a while getting down to Bracknell.
I feel full of energy today, a spring in my step. I feel very 'alive'.
The weekend has been lovely, nothing really planned apart from a meeting with a trainer for a 'refresher course' for Winston and Amber on lead etiquette and greeting etiquette. Our day care lady was there with us for that too so all the humans are now appropriately 'trained' too.
We had a couple of lovely lunches out and managed not to drop a ton of cash in Costco by being so disgusted at the queues that we simply parked up the trolley and went somewhere else instead.
Late yesterday afternoon once it had cooled down a little we (I) decided that we would finally sort out the garden shed and make it so that we could actually get the bikes in and out easily. I'm hoping that over the course of the summer we can get out and about on the bikes and get some much needed light exercise. Perhaps even with a better behaved Winston running along side (not Amber she's too old for that).
It feels good to be planning cycling excursions even if they're only a few miles with a rest over a drink in a Pub beer garden and then a leisurely ride home again.
I did my nails last night for what I believe is the first time in years. I genuinely can't remember the last time I took the time to do gel nails properly. I do know I bought the gel nail starter kit at Tesco's in Bolton late 2013 after we lost Mum.The bottle of Base/topcoat is 3.69ml - and I'm still using it !!!!
I don't consciously remember stopping taking the time to do my gel nails, but I do remember getting incredibly frustrated that I kept making a mess of them because my dominant left hand was both numb and had the 'shock' sensations going through it. It just looked a mess didn't go on right at all so I stopped doing them.
I remember consciously putting all my jewellery making equipment away in a cupboard so I couldn't see it any more when my numb hands and failing eyesight before round 1 meant I couldn't hold and use my tools let alone work with small stones and crystals. I loved making jewellery; I made all my own wedding jewellery and my bridesmaids too. I've even made pieces for random strangers too when they've just seen me out and about wearing something I made. Having managed not to botch my nails I think it's high time I got everything out of the cupboard and see if my hand co-ordination is improved enough that I can start making things again.
Post treatment update:
As usual it's mostly steroid related things to report (except the itchies that definitely the Lemtrada)
The post treatment itchies had been gone for 5 days which is probably directly related to me taking advantage of the offer in the supermarket for Antihistamines for £3.60 a box or 2 for £3.00. I do have to wonder what medication the person who made up that offer was on - clearly something too strong or not strong enough. The itchies have however slightly returned this morning, or perhaps that's just my natural reaction to 'work' (or more likely the office in Bracknell).
My body temperature still seems to be regulated by the temperature of my feet. Wearing flip-flops helps keep this in check even if I do have ugly hobbit feet (not hairy). On the bright side; they now have prettily painted toe nails.
Sleep seems to be getting better now (well it certainly was at 6:30am today when I was snoozing the alarm clock in my sleep). I'm not waking up at every tiny noise and the sleep seems to be 'real sleep' not that slight dozing sleep which leaves you feeling worse than you were before it.
Mother nature (bless her little cotton socks) has decided that my cycle would come early this month rather than the post round 1 scare the crap out of you and turn up 10 days late routine.
My 'mood' seems distinctly lighter now. Steroids make me an insufferably emotional bitch. With Nana Mary's funeral and then the anniversary of losing Ian both happening since treatment it is natural that I would be a bit emotional. The snappy snarky bitch-like routine though isn't my usual behaviour. I absolutely need to make that up to Gareth in some way because as usual he's been on the receiving end of it.
As always I'm continuing with my Oxygen Treatment once a week, I'm also continuing with the vitamin and mineral concoctions that I put together for round one. My water intake is still the recommended 3 litres a day to make sure I flush out those dead T & B Cells along with the now spent Lemtrada.
I've also now introduced Hibiscus Tea into my evening routine, made with flowers not teabags. It's a bit of a faff steeping it and then chilling it down but it's really quite lovely. It's quite bitter, a little like an unsweetened cranberry drink, but I quite like it (Gareth thinks it's horrible). According to it's herbal properties it gives the following benefits :


The health benefits of hibiscus tea include relief from high blood pressure and high cholesterol, as well as digestive, immune system, and inflammatory problems. It helps to cure liver disease and reduces the risk of cancer. It can also speed up the metabolism and help in healthy, gradual weight loss. Hibiscus tea is rich in vitamin C, minerals and various antioxidants, while also helping in the treatment of hypertension and anxiety.


I'm drinking it in the evening instead of White Wine which can only be a good thing. It may also account in part for the improvement in my mood in the last few days.
All things considered MS life post round 2 is wonderfully uneventful and everything remains gloriously 'normal'. Long may it continue!!


Year 1 now available in an eBook with all month on month blood test results in a 'reader friendly' format on Amazon https://www.amazon.co.uk/dp/B01GE1V00M
All proceeds go directly to the MS Charity SHIFT MS www.shift.ms


SHIFT MS registered charity number: 1117194

Wednesday, 1 June 2016

11 days Post Round 2 itchy and scratchy

The post round 2 experience thus far has reflected round one for me.
Thanks to the steroids I still look a little moon faced and tanned. My body is running on the 'hot' setting and I'm somewhere between 'horrible bitch' and 'dribbling wreck' on the emotional scale.
Thanks to the Lemtrada I also have the 'itchies' which seem to appear about 23 hours after I took my last dose of 1 a day 24 hour Antihistamine and 1 hour before the packet says I can take my next lot.
We have had a long weekend here in the UK so today is my 'Monday' at work, no doubt by Thursday I'll have no idea what day of the week it is - that's how it usually works for me.
The weekend has been a nice mix of busy and active and lazy and sloth like. The dogs had some lovely walks, we went to a party on Sunday evening with some very dear friends where we used to live.
Monday was emotionally draining as it was a year since I lost my little brother Ian. My head replayed the events of last year in horrible detail throughout the day. I went down to our local church in the hope of being able to light candles for those I've lost however just like last October when I tried to do that on the anniversary of losing Mum, the churches were all closed. I spent an hour sitting outside the church breaking my heart once again unable to gain entry. To add insult to injury the sign on the door said 'Open'.
Year 1 of the blog has gone onto the Amazon Kindle store today as an eBook with all the royalties going to ShiftMS the registered UK charity which has been such an amazing source of information and support for me since I was diagnosed. Unfortunately since they won't just let me give it away for free on Amazon there is a cost of £1.99 for it (the file size dictated the cost) after US taxes (mandatory even for the charity :-( ......) ShiftMS get's all the money from each sale; so it's going to a very worthy cause. All my blood results month on month are in there and should be easy to locate with the indexing as a reference point if you're comparing progress and just life in general.
https://www.amazon.co.uk/dp/B01GE1V00M
My obsession with antibacterial gel seems to be getting 'worse' since I discovered a lovely Mango scented one at the weekend. I keep topping it up just so I can sniff my hands all day and think YUM - I seem to have mislaid the plot completely on that one - if anyone sees it running around looking confused and lost please send it back my way.