Thursday, 3 October 2019

4 yrs 4mths 2 wks - ARGH ..... 3 weeks no updates BAD TRACY


I’ve had a couple of migraines over the course of the last couple of weeks (hence me missing updating the blog last week) which hasn’t been fun. I get them when I’ve been stressed for an extended period of time and to be fair with the recent scare for me and Amber’s stroke, I think it’s all been a bit much. There’s also an outside possibility that it could be new glasses related so I’m experimenting a little with when I wear them.
The weekend birthday celebrations with lovely Polish food were awesome, we only knew 2 people attending, but by the end of the evening we knew everyone and they were lovely people.
The dogs are doing great (it’s Bella the Whoppets 2nd birthday today – doggie birthday cake later) and Amber whilst still looking a little like she’s been on the Gin is loving her walks and her food and smiling.
The Rugby world cup has kicked off and I’m looking forward to lots of the matches, hopefully the England Team will be better this time (we didn’t make it out of the group stage in the last world cup which was here in the UK L) the opening game against Tonga was a good start.
Oh dear and another week has passed, and now I’ve missed 2 weeks of updates. I’m really sorry about that. I even missed my monthly bloods after turning the alarm off with a migraine in progress.
Things are getting interesting in our house, after 6 years Gareth is moving on to a new role which he’s very excited about. I’m still pinning my hopes of early retirement on winning the euro millions and becoming an animal rescuer.
Tomorrow it will be 6 years since I lost my mum, my head is trying to play the ‘time lapse’ thing where as the minutes and hours tick by I remember everything that happened in the lead up and afterwards, but I’m remembering the good things to drown it out. So far so good.
Oops … now it’s the day after tomorrow.
Yesterday was okay, a teary read through my Facebook memories and then just getting on with it. The time lapse stopped on Tuesday and left me alone.  A couple of days of takeaways have done nothing positive for me other than let me chill out and relax a little.
The weekend is looming, I’m waiting for the postman to deliver me a nice cheque which I have plans for (that work that Gareth promised to do in our en-suite back in January hasn’t started yet and I did the ‘nag at 6 months’ thing and it didn’t work either so it’s time to call in a professional) and I’m thoroughly over having to shower in the other bathroom down the hall each day.
So that’s all really life is good and normal and MS is an afterthought – the way it should be xx

EDIT and sadly Gareths 'baking bug' seems to have died of neglect :-(

Wednesday, 11 September 2019

4yrs 3mths 3wks - Men who Bake have more sex appeal

Amber did have another stroke in the early hours of last Thursday morning, this one has been a big one and she has spent the weekend trying to learn how to walk again. It’s taking longer this time for her to pull out of it. After wondering what we would do over the weekend it turned out that it was mostly about the dogs. It was Saturday afternoon before we saw her wonderful Beagle smile again. It’s so hard to watch but she’s recovered from the others so we have to give her time and as long as she is happy then we will keep going. It’s that open how long is too long thing though.

Gareth has spent the weekend making loafs of bread. We had an ‘accidental loaf’ last week when making pizza dough, I think Gareth accidentally made the ‘Serves 12’ quantity so he shaped the leftovers into a loaf and threw it in the oven. Out popped a perfectly formed, beautiful loaf …….. And it was an accident. This prompted 2 further ‘deliberate loafs’ and predictably they were again perfectly formed, perfectly baked and delicious …….
I have a ‘patchy’ history with bread making there has been a single lovely focaccia and quite a few okay ones as well as some absolutely disastrous sour dough attempts. I don’t include things like Wheaten Bread or Soda Farls in my bread disasters they are nice and straight forward and I can make them well (although I now suspect Gareth might make them far better than I can). Gareth’s adventures in bread making for next weekend are already planned and I’ve already started ribbing him about him applying for Great British Bake Off next year.

I feel no anxiety that he is great at baking and I am crap at it, the results are lovely and tasty and doing bugger all to help with me losing some chub and get into better shape. I’ve always said if we could apply as a couple we’d make a half decent MasterChef contestant.
We also did a lot of what I call ‘adulting’ – that grown up responsible thing, cleaning the house, vanquishing the laundry basket, mowing the grass and stuff. Being this organised doesn’t come naturally to either of us. We’re both pretty resistant to being grown up so it takes quite a bit of effort to motivate ourselves into behaviours like this and it’s usually a pretty grim experience where we’re doing it because we have to not because we want to and it makes us both grumpy. This weekend we did what we needed to and it was okay especially when I called time on ‘Adulting’ and said it was time to stop.

(Side note – for me, Adulting doesn’t include cooking – Sunday dinner of Roast Chicken with potato broad beans and gravy was absolutely epic and not a ‘chore’ at all it was enjoyable and resulted in an awesome meal)
We have a friends birthday coming up this weekend, an introduction to the local Polish community and food which we are very much looking forward to, and there is a Gin and Rum Festival in Reading on Friday which I’m trying to convince Gareth he should drop me off at and come and pick me up later (he thinks I’m joking but I’m taking his ‘yeah alright’ response as agreement that he’s providing a gin and rum drinkers taxi serviceJ)

One last thing, the dog training, it’s working ….. it’s such a short amount of time, but we’re seeing improvement and more confidence from Winston. He’s not reacting to things as much and he’s just relaxing. Odd to think that loving him so much and wanting to be affectionate all the time is actually viewed as weakness by him and make him think he needs to be in charge. The book is by the trainer Nigel Reed if it will help, I’m listening to the Audible version. There’s a pretty extensive YouTube archive of him that shows how he trains.
Ohhhh ohhh and anotherone last thing ….. if you like Gin you have to try Aber Falls ……. The Welsh are getting seriously good at making some very fine spirits and Liquers. I’m blaming Amazon Treasure Truck for this recommendation – I got text last week with the Orange Marmalade was on offer. Gareth was working from home so he ordered and collected it later that day. Oh my …… a small glass, an ice cube and I was in heaven. I then discovered that they also do a salted toffee and a coffee and chocolate so it would have been rude not to taste test them. They’re lovely, just an ice cube with them for me, they don’t need more although I’m sure if you wanted to they’d be lovely.

So a significantly more positive post from me this week hope you’re well xxx

Thursday, 5 September 2019

4yrs 3mths 1wk - Reflections and blood results

The morning after the weeks before

This week has felt really strange, after the stress and worry of the possibility of bad things, the relief of the bad things being counted out, holiday and countless other minor things I’ve felt a little directionless as to what I should be doing.
If I’m not fighting something, organising something or avoiding something, well what should I actually be doing? The possibilities are endless and randomly my mind is blank apart from the little voice in my head saying ‘there’s a pile of clean laundry at home that needs to be put away’ ….. Hardly exciting is it?

It’s mid week, the weekend is coming and again there’s a blank space, nothing planned, just a space where ‘stuff’ can happen but I genuinely have no idea what ‘stuff’ that will be and no ideas as to what I even want to do. There are some blocks to what is feasible while we are still working with Winston on his insecurity, but we are actually getting somewhere with that now. Gareth and I are both applying some good practice to our interactions with all the dogs and it seems to be paying dividends quickly.
So I guess that’s the weekend plan – going over repeatedly the lessons with the dogs reinforcing over and over again the lessons that need to be learnt. I’m sure by the end of the weekend we’re going to be quite mad but the dogs I’m sure will be much happy with their humans. I’ll update on that as we go.

It’s also getting to that stage where I should probably start thinking about the ‘C’ word – not the bad health one, Christmas ….. good grief how on earth did it get round to even close to that time of year again. I’ve said it before but goodness knows time seems to speed up the older you get, birthdays and Christmas’s feel like they happen so much closer together.
I guess it doesn’t help that having been so crap at planning in the past I’m trying harder to be less crap by starting the preparation earlier, this is adding to the ‘things coming around faster’ feeling because I’m ‘getting into it’ sooner. I’m really not helping myself am I LOL

Amber couldn’t get up this morning, she had stronger tremors that she’s had recently and couldn’t get up. Gareth had to get up and carry her down the stairs. By the time she was downstairs she seemed to have got herself together and wobbled off down the garden to get things done. I’ll keep an eye on her and see how she does, but it’s always there in my head that her time seems to be getting short. This is probably reinforced by having overheard our neighbour find one of their rabbits had passed away in the hutch during the day – simply awful to hear how heartbroken they were and the little voice in my head saying ‘you’re next’.
Perhaps that’s another reason why I feel a little directionless right now – I’m waiting for the hammer to fall. It seems like a long time since there’s been nothing to do except just live my life and without something to focus on perhaps I just genuinely don’t have a clue how to just ‘do’ life these days.

That sounds quite depressing, but honestly it isn’t that way at all. I’m enjoying life and love and happiness.  Bob’s in the car, his battery has been flat since last weekend and I haven’t needed him for anything I’ve wanted to do. That the training is paying dividends is rewarding and it gives me hope that we can have the dogs out with us for more positive experiences and worry less when we want to go out. Gareth and I are enjoying our time together and it’s stress free and happy. I’m looking forward to the end of the year and seeing our family and catching up with everyone and hoping that I get gift choices right for everyone and that we have a lovely time together.
Perhaps it’s just that I’m not used to normal anymore and need to learn how to do ‘normal’ again.

I’m not always focused on how to ‘live my MS life’ anymore. Yes I have MS, that’s not going to change any time soon and although I wish there was a magic ‘fix it’ button it doesn’t dictate things these days so it’s not overly intrusive. It isn’t ‘me’ though.
Its getting harder to update the blog simply because there’s no MS news, it just is …… I feel like this has become a strange online  diary of a person who happens to have MS and less helpful for people reading it. I wonder what I’m actually contributing these days other than an enormous feeling of wellbeing to those reading that at least their lives aren’t as mundane as mine is and genuinely wonder why people read it (unless it’s helping with insomnia on which case enjoy your snooze because this one is quite likely to send you into  a deep sleep)

Anyway in other news …. Monthly bloods have reflected something that Dr N pointed out to me about those blood results being too high. Both he and my GP had said that the root cause could be related to smoking. His blood results and my most recent monthly ones both show an improvement pattern which reflects their comments. Having not smoked (much) before tests one of the readings has dropped (barely) into the normal range and the other is coming back inline. My thyroid has dropped into the low end, but I suspect that might have something to do with missing  dose of meds while I was on holiday – it only takes one missed dose for it to nosedive and 2-3 weeks to get it back to where it should be.
So here we go a little later than normal because I was away, here are my August results.

Stay well and enjoy life xxx

Tuesday, 27 August 2019

4yrs 3mths - post holiday and an unexpected concussion


Yup you read that right - Mrs Accident prone had yet another self-inflicted injury to deal with.

This one was a 'coming back from the bathroom in the dark, slipping as I tried to sit down on the bed, missing and then using my face as a brake by smashing it into the bedside table.

I swear one of these days I'm going to end up doing something 'unfixable' in one of these incidents.

Fortunately as we have established over the last few years of my ramblings, my head seems to be ‘well padded’ and ‘quite bouncy’ given the number of times I’ve ended up bouncing off it.

Gareth did ask that I try to limit the number of times I do this to myself as he’s starting to expect people to be asking awkward things like ‘Are you sure that she did that to herself, walked into a door you say …….’ *whistles*. In his position I’d be similarly concerned, however so many people I know have actually witnessed my clumsiness and the injuries that result from it that Gareth is fairly safe.

Anyway what I’m taking an awfully long time to get round to saying is that the face smash, the resulting shock and me shaking like a shitting dog for a couple of hours while Gareth kept asking should he call me an ambulance – well we slept through the alarms on Friday morning and I missed my appointment with the Haematologist …… this is now rescheduled for this Friday morning so no news on that front yet apart from what I've previously shared about all the scary words coming back as negative.

Gareth ended up driving to Watchet after it became quite clear I had a minor concussion and under no circumstances should I be behind the wheel of the car whilst feeling very sick and dizzy.

The house we had rented was absolutely awesome, so comfortable, well done, even the welcome package with drinks and biscuits for the tired traveller. The beds were huge and comfortable and it was everything we would have hoped for with a secure garden for the dogs. We were a couple of minutes’ walk from pretty much everything in Watchet, umpteen pubs and places to eat, everything was dog friendly, shops, cafés, pubs even the museum. It felt like going back in time – in a good way – relaxed, a slower more sociable way of life where people talk to each other in person, over a drink. We sang sea shanty’s and ate ice cream and it was just so bloody lovely that I could see myself living there.

So if anyone needs a lovely relaxing time by the sea I can highly recommend this place.

https://holidaycottagewatchetsomerset.co.uk/

We made it home in good time on Friday with the long weekend ahead of us, so pretty epic all things considered. Sadly we didn’t do anything fun or exciting, we just chilled and relaxed for 3 days and kept reminding ourselves to stay in ‘Watchet mindset’

Back at work today, it’s nice to see everyone and catch up, but I’d rather be beside the sea.

Hope you’re well xxx

Thursday, 15 August 2019

4yrs, 2 months and 2 weeks - how to wear yourself out so you can relax

Ouch … sorry I’ve just realised I didn’t post an update last week. I’d love to say it’s because life has been so great and exciting that I didn’t find the time, but sadly that would not be true.  It’s all been rather meh’ if I’m honest, after the good news that the bloods so far haven’t shown anything cancer or leukaemia related it’s all be a whole lot of waiting for this Friday when I go back to see Dr N before we make our way down to Watchett for our holiday with the dogs and Aunty Kathy.

We had visitors over the weekend with awesome BBQ food enjoyed by all, but oh my did we drink too much – I mean way too much, I had the hangover from hell and felt ill all day on Sunday, sleeping most of it and mentally I’ve signed the pledge (for a little while anyway – until next weekend probably)
We’ve taken Winston off the Prozac that the vets put him, it seemed to completely destroy his confidence in pretty much everything and whilst he wasn’t barking himself sick he would sit and shake like a leaf and whimper when we wanted to leave the house (I’ll never forgive those previous tenants next door who have made him afraid of being alone in his own home – absolute bastards.

And it’s now Thursday – I started this in Monday, I go away tomorrow – I might even have clothes to wear if the sunshine holds and the monsoons from earlier this week don’t return. I have to pick up cat food on the way home for Murphy so that Michelle has enough for the week, make sure instructions are all written up and that we have everything sorted for the morning. I’ve not planned this very well at all.
It’s just as well really that we are only in the UK because I’ve not prepared at all, I had a stye come up in my eye on Tuesday and it’s only jus draining for a while there I literally felt like I’d been punched in the face from it. Yet more eye drops every 2 hours this time 24 hours a day for 36 hours before I could come down to every 4 hours while I’m awake.

And I’m tired, good grief I am tired.
I know it’s stressing about tomorrow (even though I’m convinced it’s going to be fine) the weekend didn’t help overdoing things, I spent Wednesday night getting up and trekking to the fridge for eye drops eery 2 hours, and I haven’t packed or prepared properly at all. Patterns – that’s all it is, one thing leads to another and another and my body just throws up the white flag and says no.

Bloods this month will be later than planned since I’m not coming back a day early from my holiday to get stabbed, they will be fine though.
I’m sorry this is a rubbish post, but I’m tired and stressed getting ready to relax (yes that sounds ridiculous I know)

Hopefully a better post next week from holibobs xxx

Thursday, 1 August 2019

4rs 2 month blood results and some awesome news


The wedding at the weekend was beautiful, Mr and Mrs Ward had a perfect day she looked beautiful and he didn’t look too shabby either J A wonderful celebration of their love and ties to the Royal Navy.
A little shopping, some lurking and relaxing and sadly the weekend was done, it was Monday again and suddenly it’s time to go back to work again (for 1 day before a couple of days off for our wedding anniversary)

I had a call from the doctors on Monday morning saying that they would like to talk to me about how the MS is going (apparently it’s un-nerving them somewhat that they see me for other stuff but apart from a monthly ‘stabbing’ the MS thing is awfully quiet). Rather than take up an appointment slot, Dr B is giving me a call on Friday for a chat.
I’ll have news for him that I received on Tuesday – BIG NEWS (unless his post has reached him – my copy arrived by email from the secretary the day it was produced) Below is the content of the letter regarding the tests the haematologist has done.

29 July 2019
Dear Miss Doust

I have reviewed your blood results which were performed following the previous clinic consultation.  The full blood count was entirely unremarkable with normal levels of neutrophils and lymphocyte counts.  The blood results sent for genetic markers to rule out an underlying cancer of the white cells including JAK-2 V617F and BCR ABL have both come back negative.  The ultrasound scan of the abdomen was entirely unremarkable.
I can chat with you about these results and the rest of the investigations when I see you in clinic next week.

Yours sincerely
Dr N

Laughing at the 'Miss' on the letter ...

There has never been a time in my life where I’ve been over the moon to be described as ‘entirely unremarkable’ TWICE and the double negative on the genetic tests is brilliant. This really was the Best Anniversary present ever. We had a wonderful meal at Menu Gordon Jones in Bath – I have to say that was simply stunning and everything we had hoped it would be.

http://menugordonjones.co.uk/
A couple of days at home with the dogs mid week completely blew both mine and Gareth’s minds, we kept thinking it was the weekend, looking at diaries for what we were supposed to be doing on Monday when actually we needed to be looking at Thursday. Confusion as to why Saturday Kitchen wasn’t on the TV, that the shops were open after 4pm.

I’m back in the office today and working from sofa again tomorrow and then the weekend realy will be here J
Anyway this month’s bloods are in, less concerned about the monocytes and neutrophils now that the big C and the L word look to be off the table.

Hope everyone is staying cool in the warm weather xxx

Friday, 26 July 2019

4yrs 2mths - sunshine and romance


4 years and 2 months since all this Lemtrada treatment began. I have set of bloods number 50 being drawn this Friday, I’m hoping that with changes that have been made over the course of the last month that perhaps this might reflect in my blood results in a positive way.
I’m completely knackered today, the heat last night and the epic thunderstorm certainly made sleeping somewhat more difficult than I’d hoped it would be. The dogs wouldn’t settle, roaming the bedroom and trying to steal each other’s sleeping positions then grizzling at each other. The flashing lightening lit the bedroom up every few seconds and the thunder was spectacular but also bloody loud. Everyone at work is snapping at each other because of the heat or just sitting there fanning themselves and watching the clock to escape to their air-conditioned cars - I’ve managed to stay firmly in the second camp and not have a ‘Hulk Smash’ moment.

Typical British I guess, weathers crap we want it to be better, weather good we moan it’s too hot and What The Forecast says it’s 29 degrees out right now (Celsius for those who use ‘other’ measurements).
I’m also wearing contact lenses today – one of the last 2 pairs in the world I own – I’m practicing for the wedding at the weekend. Funnily enough, I can see perfectly with them – no needing reading glasses for small print or laptop work, seeing glasses for moving around. I can just ‘see’ which is lovely. The little voice in my head says don’t stop just keep going, but that eye injury scared me so much. Apart from anything else, no glasses and I now hate my new hair colour and want my long hair back L so tonight is ‘colour stripping’ night to deal with problem number one and for the growing it long again – well that’s just time.

So it’s now Thursday - I wrote this ^^^ yesterday and didn’t hit post

Today it’s even hotter than yesterday the car said 37 degrees when I got into it and came from the office to finish the day in the comfort of our significantly cooler home J I’ll be telling people I live in Spen-Vegas soon J
Very much looking forward to next week, it’s our wedding anniversary on Tuesday we both have Tuesday and Wednesday booked off work, we’re off to Bath on our Anniversary to Restaurant Gordon Jones for what I’m hoping will be a pretty epic ‘Surprise Menu’ – really there is no menu, just dishes that come out to you.

8 years we will have been married, the longest thing I’ve ever done in my life except being a daughter. We’ve had a great time, there have been hard times, sad times, and downright scary times but we work well together and haven’t murdered each other LOL. In all seriousness, I love him more than ever; I couldn’t imagine my life without him and am incredibly grateful that he puts up with me J
So a week of love, wedding and wedding anniversary coming up and hopefully a nice ‘normal’ blood result tomorrow J

Stay well xxx
EDIT Again
It’s now Friday ….. sorry about that J xx

Monday, 22 July 2019

REMAP - helping make life easier for the disabled in the UK

MakeAbility is the name of the game for REMAP, a UK based charity with access to a wonderful group of people who help 'Make' custom things for the disabled.
I had a chance meeting while waiting for an eye test a couple of months ago with a lovely lady whos husband is part of REMAP Berkshire. I was in Bob juggling my handbag, phone, umpteen glasses cases that wouldn't all fit in my handbag and a cup of coffee and making a bit of a mess of things. She asked doesn't my chair come with a cup holder which would make life easier and I pointed sadly to the shattered fixings of my last cup holder on the side of the chair that I hadn't quite got round to removing after destroying it misjudging Bob's dimensions on a doorway.
She explained to me that Remap custom make things for the disabled that simplify life and to be honest I felt a little like my cup holder need a little too trivial (even if getting something that fitted on the front where the only available connection was the end of a bit of pipework with a locking screw.
A phonecall and  a couple of emails later and a lovely man called Peter came to my house inspected Bob (helped remove the old shattered fixinf for me too) took some measurements (even measured my Costa 'Cup for Life') made some sketches and said I'll let you know when it's done.
A week later, Peter with back with what I can ony descibe as 'The CupHolder that will outlive us all' It's steel, perfectly sized, sturdy and locks into Bob's piping - because I'd mentioned that I'm quite prone to bumping stuff, it's even got a rubber bumper on the outside edge to protect stuff I bump into from my super tough cup holder (my desk has a rubber bumper mark on it from the few times I need Bob at the office).
I made a donation to Remap to say thank you for the wonderful thing that they did for me - it might not seem much but having the use of my hands and not trying to wedge a cup of boiling liquid between my thighs as I moved around - well it was a big deal for me a huge one.
Remap have done a little 'case study' for their website with {SHOCK HORROR} a photo of me in it https://www.makeability.org.uk/project/17056/wheelchair-cup-holder-2/
Please take a look around at the rest of REMAP's site while you're there - it's not just Berkshire it's national. If you know anyone who could do with a little something to make their lives easier that you just can't seem to get anywhere, give them a shout, their talented engineer volunteers can probably whip you something up that's perfect just for you.
Shout out to an absolutely epic organisation and the wonderful things that they can make that are perfect for us.

Thursday, 18 July 2019

The day after the ultrasound

Ultrasound is over and done with, the lovely Radiologist, Archie said things look quite good in there

       they were looking for: Hepatosplenomegaly is a disorder where both the liver and spleen swell beyond their normal size, usually due to an infection such mononucleosis.
Archie said neither my spleen or Liver are enlarged and that for a 47 year old specimen that has taken a bit of a beating over the years the liver looks in good shape (is it strange that I’m quite proud of my liver)

So Dr N is on holiday this week but back next, the blood results are still pending (apparently they’re growing asparagus in them or something weird for the Genetic testing)
I sound so calm and relaxed about it, but Gareth’s googling really frightened the hell out of me on Tuesday, I was stressed, twitchy and incredibly nervous. When it was all over and done and I could finally have something to eat, I stopped at KFC on the way home

– big mistake
– HUGE
2 bites of my Zinger sandwich sitting at a set of traffic lights and I was throwing up into the KFC bag (fair play to the bag it did a good job) as all the stress and nerves decided to unload themselves all at once.

Everyone at work knows this is going on, the disappearing to hospital, blood tests scans etc all happens in working hours and needs to be explained. I haven’t mentioned this to family and friends though, I simply don’t want anyone else to have to worry about this while the investigations are ongoing. Once it’s done and there’s either a confirmation that there is something that needs to be worried about or I can tell everyone that there’s nothing to worry about – then I will ‘come out’ about it. As it currently stands that date is August 16th – holiday day.
Living more healthily is really nice. Waking up, feeling refreshed, no brain fog and breathing more easily.  Gareth being on board with this and participating in it is also a big thing, in the past it’s been a bit undermining to have someone continue to do all the stuff you’re not doing any more and it feels like you're having it waved in your face.

Actually on that note – the being an ex-smoker,  if anyone’s interested or cares about how I’ve finally managed it.
I’m sure you’ve probably heard of the Alan Carr book (not the squeaky comedian) – The Easy Way to Stop Smoking. I’ve tried to read it in the past, couldn’t get past the first few pages if I’m honest, incredibly difficult to read for the repetitiveness. The Audio-Book however from Audible is great, just stick the headphones in and listen. It makes so much sense and it’s a little NLP in that it repeats the message over and over to get your head into the frame of mind that you’re ‘giving up nothing’ that you’re freeing yourself from a drug addiction and that you’re happy to be doing so.

Not much of an update I guess, but something else ruled out so that’s good J
Much love to everyone and thanks for putting up with me xxx

Tuesday, 16 July 2019

4 yrs 1 mth 3wks - Scary blood part 3 Rise of the UltraSounds

Blood bit is further down where the blue writing is ..... this post was created over 2 days

And there goes another week. I’ve been a good girl taking care of me and so far there is nothing to report on the Haematologist front. The next appointment is on August 16th at 09:40am - a month tomorrow and as Gareth reminded me is also the day our holiday starts. Fortunately all we need to do is drive down the M4 to get to Watchett and being there for 3-4pm is infinitely do-able after the appointment. Another bonus for deciding to stay home this year J
The weekend was nice and relaxed, a little Oxygen therapy, some shopping, dog walking, the obligatory weekend Rib Of Beef on the BBQ followed by England winning the World Cup (cricket) in one of the most incredible games I have seen in my life. It really was one on the last ball of the Super Over. Edge of the seat, nail biting stuff and just to add a little spice – I had £1 on England to win J (my idea of what constitutes gambling is pretty pathetic)

I’m also a very short haired brunette now (dammit video ….. will sort it) I had my hair cut on Friday and decided that it looked pretty crap in boring blondness for a little while I even considered jet black hair but the traumatised memories of 15 year old me with black permed hair looking like a bad Kevin Keegan drag act reigned that impulse in J
Dog care for the wedding at the end of the month is sorted – it’s confirmed and paid for and Megan the lady who is taking care of them is lovely so we can relax and just look forward to it.

I’m going back to my 16:8 eating regime properly this week, with no cigarettes and almost no booze this should be pretty easy to manage. I’m sitting here at my desk at work toying with the idea of making my 8 hours that I can eat 12:00-20:00 today which will allow me to have lunch and dinner ….. I’m not entirely sure a cheese sandwich and a packet of crisps at lunch time is going to help in this effort though J
AAAND it’s now Tuesday – I started typing this yesterday and never got round to hitting the ‘post’ button

Something different has happened in my dull, dull existence now …..
it’s got me more than a little alarmed.

I’ve had a call from the Dunedin Spire Hospital this morning saying I need to come in for an ultrasound. It’s an abdominal ultrasound that is being done, but the request was for it to be performed by a specific person who I couldn’t  see until next Wednesday - not helped that I know what her specialisation is and Gareth’s been googling and shared what he found and has (not literally) scared the shit out of me.
Now I have an appointment tomorrow morning at 11.20am to get it over and done with.

Message left for Dr N’s secretary to call me back ASAP – I want to know what’s being looked for and where we are on results so far – all of a sudden that appointment with Dr N on August 16th seems much too far away L
Watch this space

Tuesday, 9 July 2019

4 yrs 1.5mths - Bloods behaving badly - ongoing


Monocytosis, Neutrophilia and Leukaemia – 3 very scary words.

It's really very odd to have a conversation about these things and it's not just the things in general, or about other people, but to be talking about you.

They’ve taken a lot of blood samples from me – some for in house tests and some which have gone out for genetic tests and will take about 4 weeks to come back.

I’m fairly chilled about it all if I’m honest and not straining at the bit to get all the results back ASAP. This could of course be that I’m in denial or I’m being an ostrich and sticking my head in the metaphorical sand – until it comes back I don’t have to deal with it – and I’m honestly expecting it to come back and say it is lifestyle related and can be managed.

^^^ this might sound like I’m trying to play things down, but when I saw Dr N on Saturday morning, he started with the comment ‘as a haematologist I have to tell you that your blood results spreadsheet is absolutely brilliant and even without the Dr’s referral letter I looked at the sheet and knew immediately why you were coming to see me’

Everything is there on my Blood spreadsheet – it’s been there since day 1 and I hadn’t noticed

– SOMETHING HAS BEEN GOING ON SINCE BEFORE I HAD ROUND 1 IN 2015 –

·       They were both over the high level on my pre-treatment baseline bloods that were the first entries I put into the spreadsheet.

·       Both my Monocytes and Neutrophils were regularly pushing and exceeding the upper levels since BEFORE I had round 1 of Lemtrada in May 2015

·       It’s there on my spreadsheet – it’s been there for years

·       For some reason I hadn’t marked either up as red or amber before this morning.

(I'm going to upload the updated tracker showing in the bad behaviour now to the 2 facebook groups so you can find all the new pretty red and amber highlighting)

So whilst my request to get this looked at was as a result of me raising the concern about the recent trend – actually it’s been going on far longer than the last 12 month and this makes me less concerned about it because if it really was something more horrible then I’m pretty sure it would have become evident before now.

Both Dr P and Dr N have both said this could be related to my having smoked throughout this period of time - well that has changed now and hopefully will show in the next lot of bloods I have done on the 26th of this month when my regular monthly bloods will be drawn.

I’d already massively cut down on the alcohol I was having, but I’m now depriving it of even more - not completely, but weekdays nothing at all, weekends very little. This has 2 benefits, I’m not damaging the non-smoking effort, and my calorie consumption has significantly decreased thus also helping with weight loss efforts. I’m having homemade Asparagus soup for lunch and a freshly prepared salad for dinner tonight.

Funny (not funny) how things like this really focus the mind, all those things I’ve talked about every now and again on here along with my propensity for procrastination and then laughed and said ‘here I go again’ or ‘oops again’ now seem so very important when in reality had I been more diligent before then discussion might not have been needed.

Really looking forward to the wedding at the end of the month in Portsmouth – it’s going to be an awesome day and very special indeed. Dogs are sorted for the day (nearly – confirmation tomorrow) and just need to get the finer parts of outfits sorted (the theme is Red, White & Blue)

Our holiday is 5 weeks away now, I’m really looking forward to just getting away for a week, it will also be awesome to see Aunty Kathy for the first time in an age (I’m such a rubbish niece)

Winston is being swapped onto a different med tonight so see if we can take the edge off his anxiety about …. well pretty much everything.

Apart from being crushingly good, healthy, sober and as dull as hell …. Well that’s pretty much it I’m back to being crashingly boring, no exciting tales of epic nights and shenanigans, just a whole load of not a blasted lot at all. Sorry about that L

Much Love T xx

Tuesday, 2 July 2019

4yrs 1mth 1wk - scary blood thing


*DISCLAIMER BEFORE I START*
I’m overweight, I smoke(d), I drink, I don’t do lots of exercise and it’s not often I manage the full 5 a day of fruits and vegetables …….. I’m the poster child for all that nasty stuff we’re advised will happen to us if we don’t become gym bunny teetotal vegans – so please bear that in mind when reading through todays post J

I’m writing this because I need to, but I’m not entirely sure I will actually post it – I might wait a couple of weeks and then post the outcome rather than the ‘in flight situation’
But then I did promise right from the start of this to always post everything, the good, the bad and the downright blah …

The quandary
By writing about it now it is going to make people’s minds race and wonder – but then goodness knows mine is doing a fair amount of that too and I said I would be honest and share so here goes ….

I saw Dr P yesterday about those neutrophil and monocyte counts that have been over the high level for the last 12 months. I’ve been referred to an haematologist – I’ve also played the BUPA card since in my opinion, I should not be taking up a space in an NHS queue when I don’t need to and making someone else wait for longer.
The intention is to rule out nastiness. A quick google search will tell you what high levels of each of these can be caused by.
To save you the effort of google,
-        one has ‘can be the C word’ response as the top result
-        the other has ‘can be the L word’.
Dr P was quick to say if it had been either of these for the last year then he’d expect me to be in a right ‘shit state’ right now (my words not his because he’s far more polite than me) so we’re in the process of ruling out nasties and investigating why my bone marrow is cooking up a recipe with too much seasoning.

I had googled prior to the appointment,  so the L word being part of the conversation wasn’t a complete shock,
However

it’s distinctly uncomfortable to have someone use that word in connection with yourself. Anyway the appointment with the specialist is on Saturday morning at 09:50am when I’m sure I’m going to get poked at and blood removed.
I must stress (and it might just be me being weird) that I’m not massively stressed about this, it’s all okay and I’m expecting them to tell me that it’s nothing more sinister than that I smoke(d) and need to eat more veggies …..

I put my last cigarette out yesterday after 2 weeks of listening repeatedly to Allen Carr’s - The Easy Way audio book I was ready to do it – 2 weeks of analysing every puff, the taste, the feeling, the smell, my heart-rate, ability to fall asleep and just thinking about each one – He’s right when you actually think it through you’re not giving anything up at all – its kicking an unpleasant, nasty addiction which I don’t even like, so I’m now officially a Non Smoker and I have had a big smile on my face J
It looks like I’ve sorted out the dogs for the end of July and mid-august holiday in Watchett is getting closer.

The garden is now done (well it needs mowing), but sadly I haven’t done the video – sorry about that – I’ve just texted Gareth to remind him to remind me that I need to be reminded to ensure I remember to do it J (try saying that 5 times really fast J)
Amber has had another stroke over the weekend, smaller than her previous 2, but her balance has really worsened over the weekend. She’s still herself and happy and Beagling everywhere but sometimes it hits right in the heart that time is becoming shorter and ‘when the fun stops – stop’

I guess that’s all I can say for now, will report more when I have more, and Gareth replied to that text I sent and said he’d film the video at K9 tomorrow night when we walk the dogs.
It’s all going to be fine J
Hope you’re all having an awesome one xxx

Monday, 24 June 2019

4 years + 1 month blood results

Another month and another set of blood results. Lymphocytes and TSH are both playing ball and looking pretty good. Monocytes and Neutrophils however are a different matter. I took a look at the history when I was loading in this month’s results and they’ve been on the high side for a year now and they’re getting worse not better. And yes I’ve done what I advise everyone not to and asked Dr Google (he’s a rubbish doctor) and scared the crap out of myself. I’m seeing the doctor next Monday morning to ask for some investigations to be triggered and look into it because I’m stressing about it now and that never makes things better. My trusty Excel Spreadsheet has been sent in advance so the results can all be seen in one place in the easy to read format.

The gardeners didn’t make it this weekend – they’re confirmed for Wednesday though so video will come soon.
In other news, Bob has an awesome cup holder now that has been custom made for him by a wonderful volunteer at a charity called Remap. The cup holder is epic – it attaches facing forwards from the front of the arm. It’s made of steel so it’s damn near indestructible and looks fantastic. I’ve sent a good size donation to them this morning to say thank you to them and help them to help other people who have ‘equipment needs’ to help manage their disabilities.

The weekend has been lovely with sunshine, dog walks and BBQ’s a little wine (but not too much) and plenty of sleep. Oxygen therapy on Saturday was definitely a good thing – I’m being good and going consistently right now, I’d got quite ‘flaky’ about it all in the last 12 months and missed a lot of weeks so I’ve been pushing myself to not miss it unless I have no choice.
Yesterday would have been my Mum’s birthday, today it’s 4 years since Ian’s funeral – FaceBook has kindly rubbed some salt in those wounds over the last couple of days (as if I was going to forget them) It’s been okay, it really has. The grief counselling I had last year and the balance I’ve found as a result has made such a difference to how I manage these occasions now.

We are still struggling to get dog care sorted for the last weekend of July for 24 hours – it’s a bit of a nightmare really, with school holidays everywhere and everyone is fully booked and has been for months. I’ve not given up yet, but I have to admit I’m starting to flap a bit about this challenge.
So anyway here are this month’s blood results for your enjoyment - thyroid seems to be being well behaved :-) xxx

Thursday, 20 June 2019

Sleeping update


Sleep update for those who are interested.
After 5 days of actively trying to get better quality sleep I can report that I’m feeling really good. I have had a couple of evening ‘catnaps’ on the sofa, but I’ve had significantly less of them than has become ‘normal’ in recent times. So what have I changed ……

·        I’ve actively been making myself go to bed earlier (about 30 minutes)

·        I’ve also been foregoing a nightcap (I have already massively reduced m alcohol intake over the last few years

·        I’ve stopped going for a last cigarette before bed (yes sorry but I do still do the ‘bad thing’)

·        The central heating is switched off until my stingy ‘northern-ness’ insists it is switched back on

·        The bedroom window is open through the night to keep the room cool and make sure there is fresh air (it also helps vent out the collective dog farts emitted through the night)

·        I’m also not touching my phone or iPad later on in the evening to minimise the amount of ‘blue light’ I’m getting (in recent times they’ve  been my constant companions in the evening playing games and just mucking about on the internet)
I’ve slept really well, I have more energy and my brain feels more alive. I haven’t needed to use Bob this week at work. I feel calmer and more balanced.

I’m pretty sure it’s freaking Gareth out somewhat because I’m not being ‘normal’.  I’m declining a G&T and a before bed smoke and chat. I think he’s starting to regret buying the book – he’s not picked it up since I started reading it and I think he is wondering if I’m going to turn into a teetotal sleep zealot. For a relationship built on late night conversations fuelled by wine and a packet of Marlboro Gold this must seem a very strange and disturbing behaviour change. Perhaps I should have gradually led into it rather than doing everything at once.

Only other thing worth mentioning (and a potential cause of sleep loss) is that the gardener who came last Friday and quoted has gone ominously quiet, neither sending the written quote or confirming that they can do this weekend.  Bugger …. Back to the drawing board on that one I guess L

Monday, 17 June 2019

4 years and 1 month - The power of sleep - Time for another experiment on me


Another week is now done and dusted. It’s been a ‘different’ one for want of a better description.
The notable high point was Gareth came home from work and brought me a massive bunch of roses on Friday with a bottle of Silent Pool Gin and a lovely big gin glass. He came home from work on Friday, said to stay home and cuddle the cat and took the dogs to the park. I found the flowers and gin in the kitchen 45 minutes later with a note propped up on the front simply saying ‘Happy Friday’

Low point – As I posted last week, Monday’s torrential rain brought down a massive tree / bush in the back garden. I had a gardener round on Friday to give us a quote to get rid of it, along with a load of other general ‘grooming’ work for the garden – the bill will be 4 figures to get all of the work done but I’ve seen sense and I’m going to have them come in for a couple of hours each month going forwards o keep on top of it. We actually dissected the thing yesterday in the sunshine. It’s really rewarding to be doing something so physical, but let’s be honest, I got  a bit carried away did far more than I should and properly broke myself as a result. It’s now down the side of the house waiting to be taken away either in the week if our friend can get his Landover and trailer down the lane or at the weekend by the gardeners.
I’ve also discovered a new reading experience – something completely out of the norm of my usual fiction diet of vampire, werewolf and big kids ‘action stories’. Gareth had bought the book ‘Why Do We Sleep’ by Matthew Walker. I had to buy my own copy as Gareth is actually reading a ‘real book’ one made of paper. Mine is the eBook variety, but I’ve also ordered the Audio Book version to listen while I’m working (I’m listening as I type) The concept of sleep as a prescription for human beings and it’s benefits for physical and mental health. There are some incredibly simple concepts about how and when sleep provides benefits to us.

I should add that whilst I often ‘nap’ on the sofa in the evening these days which I’ve put down to the side effects of my thyroid going on the frisk. I’m pretty rubbish at going to bed it’s usually around midnight on weeknights or at weekends. My alarm on weekdays goes off at 7am so I’m functioning on 7 hours sleep at the most. The research and studies in this book show that is the equivalent of losing a whole night’s sleep each week – which is pretty obvious really when you bear in mind that 8 hours a night is the recommended amount for general health and wellbeing.
At the risk of becoming an anorak about the subject, the Light NREM sleep,, Deep NREM sleep and REM sleep time and duration has proven to be fascinating. Explanations of why our behaviours and type of sleep have proven really fascinating. I’m going to make some changes to how I sleep and do a little ‘research’ on myself’ to see if it makes any changes. I’m thinking that work won’t be up for the idea that a 90 minute nap early afternoon will be beneficial for my overall daily productivity but I’ll certainly be going to bed earlier in the coming weeks to see if it has some beneficial effects.

I have my monthly bloods this Friday the first batch of year 5 – I’m still rather nervous at the idea that this is my last year of bloods – I’m going to not mention that it’s only for 5 years again at the doctors, just go in each month and see if anyone notices that it’s only supposed to be for 5 years.
Yesterday was Father’s Day here in the UK, always a little poignant but yesterday even more so as it was also a year since Gareth and I took our cat BamBam on his last journey a year ago in order for him to cross the Rainbow Bridge and join his old friend Gizmo again – I hope they’re having fun again together as well as ‘hunting’ – I put the hunting in quotes as they were both pretty talented at ‘hunting’ BBQ food and would through the summer bring home successfully ‘hunted’ Kebabs on sticks, bits of burger or just lumps of unidentifiable BBQ’d goodies. Anyway what I was getting round to (slowly) is that for father’s day the animals and I bought Gareth another bottle of the nice scotch that I got for his 40th birthday.

I’ve not done the video for YouTube yet – this is simply because it hasn’t stopped raining here in the UK all week. It’s been wet and windy and really quite crap. Today the weather seems to be better so if I can get Gareth to help I will have a crack at recording it tonight perhaps at the dog park if it’s nice and not too windy. Failing that it’s likely to be later this week or the weekend (I’m tempted to wait until the garden has been done and it’s prettier since I want to do it outside with the dogs wandering around and doing their thing) – I’m not going to welch on my promise – I promise J
Anyway that’s enough from me for now unless something exciting happens over the course of the week.

Stay well and try to get a good quality 8 hours sleep
xx

Wednesday, 12 June 2019

Over 200,000 views

WOW Just WOW

And it's finally stopped raining here in Berkshire but it hasn't been without it's toll on the garden which you're going to see on the video since the tree / bush that's fallen over is quite likely to still be there - actually Gareth has said he will at least disect the thing into man-handleable chunks tonight - then it can be put down the side of the house until our lovely friend who has a LandRover, a trailer and a great big farm where he regularly burns his fallen shrubbery can get over to us next week.

Apart from that, the only other interesting thing is that I had to go back to the opticians last night and chose another frame for reading glasses because the prescription for my elderly (and somewhat damaged left eye) is so high that the 'rimless frame' simply can't hold that much weight .... EEEK - so a Dusty Pink Ghost Frame has now been chosen and hopefully they'll be here soon.

Anyway here you go, proof I'm not just making up stats about the blog being read and just sitting here whittering away at just you lovely reader.

Monday, 10 June 2019

4 years 3 weeks - Big milestone for the blog and I'm going to 'Come Out'


I woke up this morning feeling good, I had energy, I felt upbeat and raring to go. I remembered my meds on time, jumped in the car and got into work. An hour and a half later and I feel like a flat tyre, someone has ‘popped’ me and let all my air out. I’m hoping that if I don’t do too much that I’ll ‘re-inflate’ later LOL
Last week was a whole lot of relaxing outside work, we had lovely meals and chilled and did very little really. Winston had another trip out to the pub and didn’t disgrace himself (much) although there was a lot of bribing him with food involved in keeping him calm and focused on us.

When I started writing this, Lemtrada was a newly approved treatment by NICE - I was only the 3rd to have treatment at Southampton once they were approved to administer it.
I had read so much by those who participated in the trials and kindly documented their experiences so those of us that followed could read the experiences of those incredibly brave people and understand what Lemtrada was and how it felt for them. It was reading those experiences, exchanging messages, emails and sometimes late night calls with those writers that made my mind up that Lemtrada was the right choice for me. I wasn’t going to give in quietly to the MonSter, I was going to war with it and well - I’m northern and ginger and I don’t fight fair so my MS should be afraid – very afraid.

The film ‘Pay It forward’ stuck in my head. The simple concept that in your life; do something good for 3 other people for no other reason than you can and ask them to also ‘pay it forward’ to 3 more. If my random ramblings could help just a few people to understand how the treatment had  been, why I chose it, and how life has been since then – well I was ‘paying it forward’ too.
It also seemed only right that having benefitted from those stories online that I should add to the documented experiences available, not just to be a recipient, but a participant too. I’m not a talented writer, grammatically I’m terrible, I am pretty crap a spell check and goodness knows I ramble a lot; but if it helped just one person – that was enough.

It never ceases to amaze me how what is effectively my online diary of life post Lemtrada and my strange slightly animal controlled life has been read by so many people around the world. This hardly a ‘right riveting read’ it’s just a diary of a  slightly crazy middle aged bird with MS.
At some point this week though the number of reads for the blog will pass 200,000 views worldwide.

I’m staggered, humbled and just a little bit intimidated at the thought.
I feel like I should throw a virtual ‘party’ and do something different to say thank you to those who have read this over the last 4 years.

I’m going to have a chat with Gareth tonight and see if he will help me with popping something up onto YouTube. Goodness knows I’m self-conscious about my weight; I hate cameras and it’s my idea of hell, but I should stop hiding behind a keyboard and ‘come out’.
If the British weather will co-operate perhaps something filmed in the garden with the dogs running around and a G&T on standby for courage.

Just writing that terrifies me ……. Time for me to ‘Find my brave’

Tuesday, 4 June 2019

4 years 2 weeks - Summer is here and blonde me is back


So how’s the week been ….. well I still don’t have me new glasses – they were rejected again at ‘quality control’ (Seriously questioning the use of the word ‘quality’ now) apparently they are being made by their ‘in house’ people and are not working with the frame.
The new due date is Thursday this week and I’ve told them if they are arsed up a 3rd time then I expect them to bear the extra cost of sending them to the people who made my sunglasses who I hope can do the job properly. I suspect it’s something sinister in regard to my prescription and the style of the lenses – I’d be gutted after this long to be told ‘sorry but your eyes are just too rubbish to get lenses that thick in the little dainty frame you chose. Watch this space I guess.

Gareth’s new glasses had arrived yesterday ordered over 2 weeks later than mine – they look fantastic too. The benefits of being nowhere near as blind as me I guess J
I’m also now a very light blonde rather than the pretty dull shade of ‘mouse’ that I’ve been for a long time. Was gutted when I’d been here at work for an hour this morning and a total of ZERO people had noticed L (perhaps I should get them to get new glasses as wellJ)

Winston’s session with the trainer went well on Friday, he has ‘homework’ to do a few times a day gradually increasing the time away from him. She’s talked to the vet today to get Winston some ‘doggy zanax’ type medication to try to lower his stress levels – must remember to pop in and collect them on the way home tonight.
We are making good progress with Call Of Duty, only 2 series left to go. There’s also the long awaited Good Omens which I also need to sit down and watch – I first read the book over 20 years ago and it’s always been in my top 10 books, hilariously funny and it gets more funny each time I read it because I know what is coming and start chuckling before it even happens. I do hope the dramatisation is true to the book or I’ll be yelling at the TV correcting the dialogue J

I’m doing my annual ‘find someone to give the garden a damn good grooming’ routine again, the hedges and borders and weeding needs to be sorted out, I’m also going to ask for a regular monthly maintenance to be done rather than just a couple of times a year blitzing it.
Today I’m tired and wobbly – I didn’t sleep too well last night, but a good night tonight should put me back on track hopefully. I’m bimbling around the office in Bob and just getting on with stuff as you do – It’s been pointed out that I sound like a ‘drone flying around’ in the office LOL

Life is good, happy and content as it should be. Onwards and upwards everyone xxx