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

Wednesday, 29 May 2019

4 years and 1 week (or 1st week of year 5 depending on how you count time)

2 weeks into year the 5th year or 4 years and 2 weeks post treatment start depending on how you view it.

The long weekend has been lovely, I ended up taking the Tuesday off as well as the Bank Holiday Monday in the end. Friday wasn’t going to happen, I had another implementation over the weekend which started at 10pm on Friday night and was finally all done and dusted by 01:00 Sunday morning so 27 hours in total, but we did include time for sleep in this one which was lovely.
Gareth spent Thursday to Sunday with his Family ‘oop norf and I stayed home as dog mummy. It was a shame we both couldn’t go, but with Winston’s anxiety right now it wouldn’t have been a good experience. Gareth got to see the Hallilapse show that Christian has been working on for the last 5 years, he side it was awesome and given the extra number of shows that have sold out it’s been a roaring success.

I went to pick up my new glasses on Saturday, randomly my ‘seeing glasses’ which were due to be there were still in, but my new prescription sunglasses which weren’t due until this coming weekend had already arrived. They look fantastic, so shiny and new and when I put them on ….. well then it became really obvious the changes in my sight since the injury. The whole world was suddenly much clearer. My ‘seeing’ ones apparently failed quality control and the lenses re being remade again – quite grateful they are so strict with it and that they are taking the extra time to get it right.
In the meantime though, I’m stuck with the hideous black ones that were never meant to be seen in public.

Monday was a little bittersweet, Kirsty and Jake joined for K9. She had big news and I’m both delighted that she got the job she wanted but also sad that she got the job she wanted – it’s in Vienna, so once again she will be moving away once again L.
So I’m back at work today, a nice short 3 day week, sadly I can report that once again I have not won the lottery so my retirement plans remain on hold. I also have 5 days work to cram into 3 so that’s going to be a fun challenge.

Winston is at the vet tomorrow for a ‘mini-MOT’ – we have a trainer coming on Friday to help us with his separation anxiety and she asked we get him checked by the vet first to ensure there isn’t an underlying medical condition contributing to his behaviour change. This makes a lot of sense, dogs can be hiding many things with their generally ‘normal’ behaviours and to be honest I hadn’t even considered that there might be something medical as a trigger. She suggested possible things like ear infection, or because of the corgi in him, hip or back problems.
We have dog walks booked for the week and very little else which feels very rewarding. Just some time to chill out and enjoy life and chose what we want to do when and if we want to. I know I’m supposed to be turning over a new leaf and living more rock-star but  week of very little looks lovely right now.

I’ve got tomorrow to get through, 4 years since we lost Ian, I still can’t quite get my head around him being gone, my little brother (well as a little as a 40 year old can be) but it will be okay, emotional but okay.
Six and a half weeks to our holiday in Watchett when we booked it, the holiday seemed so far away, over 6 months away – where the heck did that time go?

We have a military wedding in Portsmouth at the end of July to prepare for, got to get a dog sitter sorted to move into our house for the weekend to keep the beasties company and exercised while we are gone.
Life is gloriously normal – long may it continue xx

Monday, 20 May 2019

Year 5 - here we go again, a review of changes and month 49 blood results


4 years and 1 week since treatment start
WOW

My Facebook feed for the last week has been full of updates from treatment week and then from round 2 a year later. It really does seem very bizarre that it was so long ago because in my head it’s seems like it was only a short time ago. So much has happened, but by the same logic in terms of my MS – well nothing has happened.
I’m now a 4 whole years NEDA – No Evidence Disease Activity. It’s exactly what I hoped for when I chose to have Lemtrada I wanted to stop the MS in its tracks and I did.

I guess it’s time for a bit of a recap really a ‘then and now’ of how things are going, please excuse the lazy copy and paste from 4 years ago for the ‘then’ part, but as I said from the start this was my way of keeping myself honest, and check I'm not remembering stuff with rose tinted glasses and to present a realistic view of how things are.
[INSERTED COPY AND PASTE]

What I had before that I now Do NOT have :
  • Cog-fog - Gone - The oxygen therapy helped with this greatly my brain is now clear (well as clear as it's ever going to get)
  • Constant Foot drop Gone - If I'm really tired this does reappear a little but a little rest and it disappears again
  • Spaghetti leg Gone - This was my name for 'whole leg drop' - the extreme of foot drop that had me in a wheelchair coming back from Milan in April 2015 - If I really overdo it and walk too much occasionally I can feel my leg getting wobbly so I slow down and rest up
  • Tiredness  - Mostly Gone - The oxygen therapy helped with this, I have tried never to call this MS Fatigue - MS has NEVER stopped me getting up and getting on with things. I regard Fatigue as an extreme where the exhaustion stops you in your tracks makes going on impossible to achieve not just bloody hard, so I call what I have tiredness - My medical team smile at me in that 'yes dear' way when I explain this so I'm probably playing it down  EDIT- I should add that I often talk about tiredness and fatigue nowadays, but this is a result of the thyroid problems that I’ve experienced in the last year and a bit – we all know thyroid problems are a distinct possibility post any IV Treatment and we have had the ‘mother load’ with Lemtrada. I had hoped to be one of the lucky ones that it passes by but sadly not. It’s why I now have ‘Bob’ for doing more strenuous things. On the sliding scale of things – it’s a small price to pay for the rest of this list being gone.
  • Bathroom Urgency - Gone - And oh boy it's nice not to hear that screaming claxon in my head yelling 'Go NOW you're about to embarrass yourself' 
  • Optic Neuritis - Gone - My vision has settled down completely now. the pain in my eyes and loss of the ability to see anything in detail (like words on a page) all returned to being just as rubbish as it's always been my whole life. My eyes might be dreadful, but I can drive, read and live normally the thought of losing that was horrific to me EDIT- to clarify, my recent eye posts are a result of an eye injury when a piece of shrapnel that got under my contact lens and gouged my eye not Optic Neuritis / MS related
  • Lack of balance - Gone - .I posted my post treatment physio assessment back in year 1 with the pre-treatment one as a comparison. The lovely Marnie was staggered, it was like night and day I could balance with my eyes open and closed, no toppling sideways and needing railings to hang on to. Now I'm just as clumsy as I always was before MS :-) EDIT- The thyroid / tiredness does affect my balance to a certain degree, the more tired I am – the more I look like I’ve been on the Gin
  • Sensation loss - Gone - Before treatment the ONLY parts of me that actually had skin sensation was my right arm and from my boobs to the top of my head. Everything has now returned to normal with the exception of my thumb and first 2 fingers of my left hand and the palm bit that joins them. That bit of my hand feels permanently like a phone is vibrating against it - this wipes out the ability to actually feel any other sensation through the 'buzzing'. I have experimented while on holiday with what's best described as a 'herbal remedy' and when the buzzing stops the sensation in my left hand is perfectly normal. My old Neuro wasn't even convinced this is MS related to be honest and might just be from the neck injuries sustained in a car accident many many years ago. EDIT- The hand sensation loss remains, it’s been so long now that I suspect it will always be so. There’s also some loss in my left arm in the last few months (see recent posts about ‘the spine guy’ – I have a problem with my C7 vertebrae pushing a disc out of place as a result of ‘a degenerative bone disease’ ….. I’ve got arthritis which is to be expected my parents had the hereditary form so I wasn’t likely to escape that – I’m on the same treatment as the dog for this and it's not MS related - LOL
All things considered, this is all going according to plan, the thyroid problems whilst unwelcome were a known side effect and not unexpected. - MS wise things are going to plan.
Life and stuff for the last week have been good. The ‘spine guy’ as released me from treatment, the injection to the nerve cluster may take many months to show any result and it’s a just wait and see scenario. I’m now released from the Eye clinic, infection has gone completely and whilst the scarring in my left eye has left a ‘fuzzy bit’ (think looking through a bit of frosted bathroom glass) I can see light and shade through that bit so it’s not as bad as originally thought to be.

I’m picking up my new ‘seeing’ glasses this Saturday so I can get rid of these awful black framed things I’m currently wearing and replace them with the much prettier new prescription ones.
Gareth is planning a short trip ‘oop norf’ this weekend to go and see the last day of his friends ‘Hallilapse’ show. Given the recent issues with Winston and his anxiety I’m going to stay home with the dogs and just relax. This does mean that since it’s yet another bank holiday weekend here in the UK, I can add a couple of days wrapper around the weekend and have a 5 day break, with Gareth and I still getting a ‘weekend’ together just a little later than normal – the caveat for this is that Gareth can get leave approved – bit pointless me booking it if he can’t really.

Saturday night was good fun, we had company and watched the Eurovision song contest. Not a huge ‘drink-fest’ although we did have a go at the drinking game. I love that Iceland always sends artists who enjoy the opportunity to shout at the rest of Europe, the yodelling Australians on windscreen wipers were very strange and as always the UK entry was just disappointing. Madonna is neither aging well; or gracefully and her dancers with their ‘mini-protest’ went largely unnoticed.

EDIT - for those readers in Norway, rather liked your entrant, although the guy with the bald head reminded me a lot of the singer from Right Said Fred - I kept expecting him to sing 'I'm too sexy' every time the camera moved to him :-) cc
This week looms one more with plans afoot. Tuesday is a night out at a new start up holiday business that a friend of ours is running - that can only be traumatic for the savings account. Wednesday a night out with Terry for a meal and catch up. I should probably do the work thing too - unless the Euromillions comes up trumps (not Donald) tomorrow night. New glasses on Saturday, then the weekend when Gareth gets home (see previous caveat).

Not quite the glamourous and hectic lifestyle we’d like, but then we also have to consider Winston and his anxiety into the equation. He’s getting there, a little better each time but he’s got a long way to go. Amber is better each day, still wobbly but better.
All things considered, life in the Doust world is pretty awesome really, the sun is shining and life is good.

So here we go with the start of year 5 post Lemtrada continuing to kick arse and take numbers.
Last Friday’s blood results for your enjoyment – As usual there are some misbehaves and some wins. Lymphocytes are satisfactorily low, Thyroid is still within the normal range (barely)

It’s all good, hope you’re all enjoying the wins xxx

Monday, 13 May 2019

The last post of YEAR 4 - sunshine, and stuff


Scores on the doors for things I wanted to achieve over the long weekend
Jobs around the house – FAIL
Relaxation – WIN
Eye Check-up – PARTIAL WIN
Dogs having lots of fun – WIN

The hospital went well yesterday, the Ophthalmologist has said I can now stop the drops and the gel stuff in my eye. She did say I can’t be signed off just yet, I have to go back again next week to check the infection hasn’t returned with me stopping the drops – she went to great lengths to explain that the infection in my eye was very severe and it’s imperative that they are sure the infection is gone (flesh eating eye thing sprung to mind when she was talking about it – EEEK).
I have an appointment next Sunday to go and have my eyes tested again to quantify just how much my prescription might have changed, plus since I can’t wear contacts any more, I’m going to need prescription sunglasses as well as just normal ‘seeing’ glasses (I can hear the savings account whimpering at the damage this is going to do to him)

The 4 day weekend was lovely, although I never did get round to doing the house stuff and Gareth forgot to mow the garden (you’re going be in trouble with doggy day care for that one Gareth)
We are trying something new with Winston to see if it will help with his separation anxiety, CBD Oil of all things – it’s supposed to be very effective for dog anxiety. Watch this space for progress updates.

There are going to be busy times coming up in the next few weeks, it’s also coming up on ‘that’ time of year again when it’s the anniversary of losing people and all that. I’m hoping the busy makes for it being more balanced this year.
We finally got round to watching season 1 of Call Of Duty over the weekend, binge watched season 1 in a single sitting. We always seem to get to these things long after the rest of the country has enjoyed watching them (I joined ‘Vera’ at season 8 earlier this year)

Dog news …
Amber is much better, she’s still very wobbly and can fall over, but she’s still completely mad for her food and loves to go off an ‘beagle’ so unless she’s unhappy we are okay with that.

Winston seems to be dealing with Ambers stroke far worse than she is. His separation anxiety has gone through the roof.  He shakes when he thinks we are going to leave the house and barks hysterically when we do. We are doing what we can to keep him in a calm state of mind, music playing when we do have to leave him, Adaptil Plug ins around the house (it smells like old people here) lavender oil on all the dogs collars and some CBD Oil as a food supplement.
So we are trying a new brand – yes – WE are, the dogs and I are now on simply CBD – the light formula arrived a few days ago and I figured since I have to remember for them – well I might just remember for me to so why not give it another try. It’s been a couple of days, it’s way too soon to tell if it will be effective for Winston or me, but his desire to vanquish anyone who comes to the house (particularly the postman) and the continual, never ending buzzing in my left hand – well they both seem a little reduced – could also be wishful thinking though so I will reserve my product review. Winston will stay on the light – my I’m pending a delivery of the blue formula (but sharing the dog dose in the interim J)

EDIT
Sorry – it’s now Monday of the next week – this is still open in a Word document on my laptop and I haven’t hit post yet – I’m a bad, bad blogger.

Well the weekend was lovely, BBQ on Sunday after I’d been and had my eye appointment – new glasses are on order and arriving on the 25th, there’s a small snafau with the sunglasses but that should be resolved later today with a phone call.
Saturday was a great chance to catch up with friends at the social event of the year – Jasper’s 3rd Birthday Party (we are so rock and roll)

Yesterday evening I had the surprise news yesterday evening (randomly through an obscure slating of someone’s dish  on Rate My Plate) that my lovely friend Terry is over from Australia so we are going to catch up over the next couple of weeks with him and hopefully also with his lovely other half when she gets here. It’s been 2 years since we saw them so it’s going to be lovely to catch up with them.

I’m back at the hospital tomorrow for what will hopefully be the last check up on my eye. Thursday I’m at Circle Hospital again for the follow-up appointment with ‘the spine guy’ – I’m not entirely convinced that the being stabbed in the neck thing did much at all overall, but I’ve pretty much got used to living with the slightly numb arm now so I’m not inclined to do anything more invasive to try and correct it.

Winston and I have been on our CBD rations for a week, he seems a little calmer (well the neighbours haven’t complained about him this week) he still shakes when we leave, but I think is barking has reduced. I wish I could just have a chat with him and find out what is triggering his anxiety though (if Dr Doolittle is reading this please get in touch) For me, well my left hand is still ‘buzzy’ but then it has been for years so that’s not new, I’m upping the dosage a little this week to see if that can help (as per the guidelines) will update if something wonderful happens.
As usual at this time of year, my thoughts are turning to my weight and doing something more proactive about getting some ‘chunk’ off. I’ve lost 2 stone doing the 16:8 fasting method, but I’m thinking it’s time to up the ante a little, lower the carb intake and double the reward. And if I’m brutally honest I’ve been quite rubbish with 16:8 in the last few weeks so I need to give it a bit of a boost anyway. We only have 3 months to go until we go on holiday so there’s my target – lose as much as I can by our holiday J

I have my first bloods of Year 5 on Friday. This is the final year of my mandatory monthly blood tests. It’s strange, but part of me isn’t comfortable with the thought of them stopping. As much as it’s a pain in the arse getting them done, there’s a level of comfort to be felt from getting them - I’m not entirely sure I want them to stop. The subconscious does strange things sometimes, I’ve been looking forward to them being over and done with and now I’m nervous that they will be over and done.
So that’s me for this week (and last – still sorry about that)

Hope everyone’s enjoying some sunshine and better days
xxx

Tuesday, 30 April 2019

Amber update - good news and I'm back to happy again

Post vets update

So it’s confirmed Amber has had her second stroke, or in doggy terminology – canine idiopathic vestibular syndrome. She was given a steroid injection last night and has a new medication to take twice a day. I double checked the date of her last one while we were there, it was the weekend of my birthday March 3rd so she went 8 weeks between them. The vet said that in comparison to other dogs she had seen this wasn’t too bad (Our friends dog Jake was much more severe last year and he’s on the same meds and mostly back to himself again now) so fingers crossed. She did have the ‘quality of life’ discussion with us but agrees Amber is happy if wobbly and now is not the time.
I’m feeling more myself today, I’m a little sad because it would have been my brothers 44th birthday today, Facebook is both kind and cruel in showing the photos of Ian’s 40th as a little cruel in asking me would I like to wish him happy birthday – goodness knows I would.

So the rest of the week - now I’m not a blithering mess.
I have a 4 day weekend coming up. Monday is a bank holiday here in the UK and I booked Tuesday off because I’m back at the hospital for my eye check up at 11:45 and it seems a shame to not take advantage of a long weekend.

We don’t really have anything specific planned, but I’d like to get those bits and bats around the house started that I’ve been threatening to get on with for ages (I’m sure this idea will horrify Gareth) I’ve booked extra dog park sessions for the beasties which will make them all very happy.
I’m actually feeling pretty ‘serene’ today for want of a better word, I think I’ve finally caught up on the sleep that I’ve missed for the last few weeks. Bob is in the car not the office and the sun is shining. I’ve got loads done already this morning, I’m on plan for my eating regime and I’ve only had my one cup of coffee per day. I’m working my way through my first litre of water and I haven’t missed an eye drop at its required time. Gareth’s working from home, so Amber has him there and I’m not worried she might be trying to get up or down the stairs in her wobbly state.

It’s all good.
Sorry for being such a worry wart yesterday and sounding so down. I’m back to my usual happy self today.

Tracy xx

Monday, 29 April 2019

3 years 50 weeks - Month 48 blood results are back

Highlights for this month’s bloods

1.      My thyroid is still ‘barely’ in the normal range ….  Although right at the bottom end so Hyper remains a challenge.
2.      Neutrophils and Monocytes are still misbehaving
3.      Lymphocytes remain satisfyingly in the lower end of the normal range.

Sending bloods on to the neurology and doctors as usual long with an enquiry to see if there’s anything they can do to understand why the Neutrophils and Monocytes are always high, they’ve been that way for many months now and I’d like to know why so that I can project manage getting them right again (as I do with everything)
Eye update – Still going with the drops and the gel stuff, I’m cautiously optimistic that they might have been mistaken about the sight loss being permanent, either I’m adjusting to it really well or my left eye is so blind I can’t see the difference any more LOL. I haven’t had the horrible zig zag rainbow lights in my vision since last Thursday and no pain killers either. So fingers crossed when I’m back on May 7th they have some positive / good news for me.

Amber is back at the vets tonight, she had another stroke yesterday and is off her feet again, she seems okay in herself, although her tongue pokes out most of the time and when she’s just woken up she can only walk in circles and she looks very drunk when walking. I hate it when she falls, but she just shakes her head gets back up and starts again. Animals are so much more resilient than people. Last time on day 3 she improved back to normal so we are keeping our fingers crossed that tomorrow will be a better day for her. In the interim I feel physically sick just worrying about what the vet will say.
The weekend was quiet and peaceful in comparison to last weekend, no frantic dashing around or visitors. I made Lamb HotPot yesterday for Sunday dinner and it was pretty awesome with plenty for leftovers – sadly I then forgot to put it in the fridge and it’s currently still sitting in the pot on the cooker top - so that’s buggered that plan up.

The rest of the week seems a bit of a blur right now, I guess a lot will depend on what the vets say about Amber.
I’ll put another update our later this week when my head is a bit more organised, I’m pretty scatter brained right now wondering what they’re going to say to us.

Sorry xx
In the interim here's the blood results xx

Thursday, 25 April 2019

3 years 49 weeks - life returns to something vaguely resemling normal


Oh dear I’ve just read back that last post that I thought I’d done pretty well in the dark courtesy of Siri …. Apparently not, it’s garbled there are some ery odd things here, but I’m going to leave it as evidence that Siri is an idiot and I was pretty blind at the time.

Apologies for nearly 3 weeks of silence, but the eye injury turned out to be far more serious than we had ever imagined it would be. The Ulcer in the gouge in my left eye was infected. It took 5 days of drops on the hour, every hour 24 hours a day just to get it a little under control, then another 4 days of every other hour 24 hours a day. Over the Easter weekend it came down to every 3 hours and as of Tuesday I’m down to every 4 hours but also have a gel thing that has to go in 3 times a day as well.

The infection has caused some scarring to my cornea which the Ophthalmologists think is permanent and has caused about 25% sight loss in my left eye.

Fortunately I guess as I (very badly said in the last post) my left eye is the rubbish one anyway so 25% of not a lot isn’t really the end of the world. It’s been quite disorientating learning to see around it, the headaches and light refractions around any light surface distracting. But all in all ….. could be worse.

Having a ‘blind’ bit in my eye isn’t how I thought it would be, it’s not dark for starters, it’s like a piece of frosted bathroom glass is in the way, it’s a light bit of frosted glass that I can’t see through but it’s not dark.

I’m back at the hospital in a couple of weeks for the next review, so more on that one later.

I went in on Tuesday and tried to get my monthly bloods done, sadly the  new nurse couldn’t get blood from me, either I turned into a stone, or she had performance anxiety trying to do it in front of the trainee nurse J So I now have a massive bruise in my left inside elbow bit.

It was Gareth’s 40th birthday on Friday, a surprise visit for him by his parents and a surprise dinner with friends on Friday night. It was a lovely weekend although not without its challenges.

Sunday lunchtime we tried to drive down to Portsmouth to see Gareth’s grandmother and were witnesses to a very serious head on collision on the A33 and spent a lot of time out in the sunshine helping look after the injured the police, fire and ambulances were magnificent and were impressed that the head on collision was so well organised when they got there (Off Duty poolice traffi cofficer, ex army, first aid trained program manager co-ordinating the post accident activities - we were awesome),  

Then an unplanned taking apart of the spare bed frame and dispatching it to the tip because it was completely broken, a trip into Reading to disassemble another bed frame and bring it home and reassemble it in time for Gareths parents return from Portsmouth.

By Monday all I wanted to do was sleep and get over the 4 day weekend J

I’m back in work now after a whopping 2 weeks off, the first sick note of my entire working life – seriously never had one before until the ripe old age of 47 – that must be worth some kind of achievement badge J the 4 hour drops and gel cycle is manageable now and I’m starting to feel something vaguely resembling human again.

Back to the doctors tomorrow having drunk a gallon of water to see if this time they can get blood from the stone J

Hope everyone’s having a great one, much love xx

Wednesday, 10 April 2019

3 years 46 weeks - OMFG the week of hideous pain

Simply where to start ....

It’s wednesday I can finally see again so I’m updating the blog.

 It should be said that any mistakes that I made in this weeks blog on the Responsibility of Siri and not my crap typing

 Okay let’s start with what I’ve already told you about the spine guy and getting my left-arm sorted    Had he mentioned in our previous discussions that he was going to directly inject into the nerve cluster  then I might of been a little more apprehensive    I went in there expecting pain free loveliness and getting over my fear of being stabbed in the spine   This was not the case

When someone injects directly into your nerve cluster, it’s a little bit like being electrocuted like what you see in movie torture scene - it really bloody  hurts.  Especially when whimpering in pain you beg him to stop so he does. You’re now trapped - you can’t move, just lay there and swear and then tell him to get in with it. In totial the agony actually lasts the best part of three minutes whilst electrocution feeling continues   Fortunately as soon as they remove the needle everything went back to normal pretty quickly and it seems to have done the trick so far.

 The surprise horrifically painful thing

I should start by saying that given the choice I would go back to the spine guy and let him do ^^^^ again another 2 or 3 times before I EVER go through the next bit again.

 We are walking round Costco on Saturday with Gareth’s mum and dad when my eyesight started to go very weird   I could literally see light trials from the fluorescent lights a bit like being in a nightclub without the good music and nice dunks.  by the time we left I realised my left contact lens was becoming painful I took it out and thought no more of it.  Sadly by that point the damage was already done.

Sunday was just horrific I had my eyes checked I was told it was a scratch keep it clean it would be okay but I was so sensitive to light and the pain was so awful I didn’t know what to do with myself

 There wasn’t a chance in hell I was going to get into work on Monday those electric lights they have in offices burnt my eyes, by now left side of my face felt like i had been rabbit punched to the side
Of my face - my eye was so painful I didn’t know what to do  When I hadn’t slept at 3 o’clock on Tuesday morning I dragged Gareth out bed and to the hospital.  Confirmed (again) Scratched my eye but quite possibly an ulcer as well -  we left the hospital at 7 am with instructions to return for the eye A&E at 9 am  -  sleep is for girls

 Was confirmed at the emergency eye clinic not only do I have a big gouge on my left Iris there is an ulcer there   I now have many types of drops one of which has to go in every hour on the hour 24 hours a day

 I woke up today and I have almost no sight in my left eye it looks like someone has put a brick through the windscreen of my vision and I can see almost nothing  Neadless to say when I phoned in this morning to my boss I was in tears he’s just told me not to bother for the rest of the week. I’m back at the emergency eye ward tomorrow at 1:15 pm to see how it’s coming along and I’m hoping that the loss of vision is the ulcer feeling And not permanent sight loss.

 Now before anyone gets excited and thinks this has anything to do with Lemtrada  it’s just something that happens to people who wear contact lenses.  It’s an extreme reaction to something getting under my lens and scratching my eye  Needless to say my vanity is simply not that big and this is not the first eye injury  as a result of wearing soft lenses however it will be the last.  I’m simply not willing to ever go through this again   My eyesight might be rubbish my left eye might be my very rubbish eye  what is rubbish  as it is I can see through it and I’m not willing to risk that.

 So apologies for a strange update but that’s all I’ve got right now sitting here in the dark talking to my iPad with one eye closed and the other mostly closed to hide from the light of the iPad screen

 Hope you’re all doing well much love xx