Friday, 15 February 2019

3 yrs 37 weeks - good news and possibly a mild concussion


The morning after the night (weekend) before

After Friday’s excitement, getting cold and wet, lost train tickets, taxis and lovely policemen, the news that I’ve achieved Lemtrada Gamer Level 4 Year Long Term Warrior. You would think the next thing I had on my ‘to do list’ would be to have a celebration and relax a little. Sadly this wasn’t the case, I got home just in time to start ‘implementation weekend’ for my project. This was a deployment which spanned a 24 hour period with key checkpoints at 7:30pm, 11:30pm, 04:00am, 07:30am, 11am, 14:30pm ……..

Needless to say I’m pretty broken. It’s going to take me about a week just to get my sleep back to a normal level and make this right again.

I’m pretty sure my thyroid going haywire again really isn’t helping matters; it really does completely flatten me when it’s misbehaving in a way MS never managed to.

In terms of life the world and everything, well the last couple of weeks has been a deluge of work and not much else, it’s existence and a never ending battle to keep ahead of the avalanche leaving no room for other stuff.

I’m not drowning, but I’m sure as heck not making much progress, treading water at best really. The fundamental thing is that’s good news – MS not getting worse is great, I just feel like I need to have something getting better as opposed to not getting worse if that makes sense. I just want it to be more

Its Valentine ’s Day today and we have a lovely meal planned at home along with a bottle of bubbly. Just a night on the sofa, cuddled up with a film; sounds about perfect to me. (Logistics of this with 3 dogs who also want to cuddle certainly doesn’t help with the romantic mood J)

Monday night went with a bang (not in a valentines type way) I lost my balance trying to rearrange the dogs on the sofa and went backwards over the coffee table. I neatly stopped my descent to the ground by using my head and right shoulder as a brake. OUCHIES …… I can’t lift my right arm without yelping like a baby and the banging in my head hasn’t stopped since. There’s a good chance I have a low grade concussion, but it’s not really stopping me doing much except I don’t seem to be able to remember what day of the week it is.
Oh and PS - I've just come back from a visit to my doctors appointment this afternoon - after the afternoon in an ambulance, heart worries which turned out to not be heart problems at all and the 'Do you know you have high blood pressure madam' converstion - apparently it's being in the back of n ambulance which raises my blood pressure because ouside one there's nothing wrong with it at all.

He is however sending me to a specialist about my arm - he wished me luck having the conversation with whoever I get through Bupa who tries to blame it on my MS - 4 years of MRI evidence of no progression and one of the top neurologists' in this country and MS specialist who has said it's not MS it's the neck injury causing the problems with my left arm and hand J

All of a sudden I feel like I've acomplished something - I've beaten my none existant blood preasure problem, I've a new specialist to house train ....

I think that calls for a celebratory G&T

Happy Friday my lovlies xxx

Saturday, 9 February 2019

3yrs 35 weeks - Blood results and MASSIVE Neurologist News

3 years and 35 weeks already. Sorry for not posting last week, Amber-Dog was incredibly poorly, an emergency vet trip last Monday night because she was throwing up and having problems breathing, X-Rays, ultrasounds bloods and medication, then 3 days in our own vets on a drip with pain killers. There is a £1,404 bill for the week for what basically seems to be a hugely expensive bout of doggy gastroenteritis. We got her home from the vets on Thursday (she was back to her vocal demanding food and insisting everyone pay attention to her) and life returned to normal.

Friday Gareths parents arrived for the weekend along with the snow, it took them ages to get here and as usual the route off the M3 and through Basingstoke made the national news for it's simple inability to actually manage a little snow with any dignity at all.

This week has been completely nuts at work, the lead up to a big deployment weekend at work. I've been in at 8am and still online at 10-11pm at night. I suspect I'll be paying for that next week when my body decides to make me slow down.

On Wednesday I got a phone call from London saying that my Neuro appointment was being brought forward to Friday - cue me having a bit of a flap attack and wondering what the MRI 2 weeks ago had shown up that necessitated the appointment to be brought forward by 3 months EEEK

I've been into London today, and met with Dr N, apparently good news needs to be shared quickly under Berkshire and London NHS

4th year NEDA - No Evidence Disease Activity

Lemtrada is still doing its job, everything I hoped and dreamed it would do. Yes my thyroid has gone a bit tit's up (more about that with the bloods) and sometimes I need Bob for the things that require significantly more stamina than I currently have. But I'm not collecting scar tissue in my brain and spine like some collect shoes or tattoos and I'm not collecting a load of new symptoms. So YAY BLOODY YAY.

Something Dr N also said is that I'm approved for a 3rd round if I ever need it, so I don't need to fight for it. All that time doing the cost benefit analysis of it to show for me it really has been a cost effective investment for the NHS, and the risk assessment of alternative types of treatment and their suitability can happily get put away. It's lovely and reassuring to know that I would not have to do battle to get a 3rd round should that ever be the day.

While I'm waxing lyrical about the NHS, I should also give a huge shout out that I can't find a single negative about being under Berkshire (apart from having to use public transport to get there) The efficiency and professional way they manage your appointments, the not sitting around for hours and the setting up of your next MRI’s and appointments pretty much before you even get home from the one you’ve just been to.

It’s Friday night, the first phase is going well with the deployment and the next update call is at 4am so I’m going to go and hit the sack shortly.

And last but not least – blood tests, I had a call from the Doctors this week – I’ve been asked to reduce my Levothyroxine from 150mg a day to 125mg … it would appear that it might have been a little much as I’m now showing hypo on my blood results (sadly I haven’t suddenly become a svelte size 10 (UK) size)

The other wierdies are starting to come back in line and my Lymphocytes remain happily on the low side of the mid-range so they’re behaving themselves (as the MRI shows)

After getting thoroughly soaked about 8 times getting into Hammersmith to Charing Cross and back, losing my train ticket between Paddington and the hospital, spending £60 on trains and taxis, accidentally spending £14 to buy a coffee in  ‘cup for life’.

Well I’ve had the biggest smile on my face, this is the best news I’ve had in ages, add to that apparently it’s far more convenient to put Bob and I in at the front of the train so I’ve had 1st class upgrades going both ways.

Today has been a bloody good day and I’m a very happy girl.

Anyway those blood results .....

Monday, 21 January 2019

3 yrs and 33 weeks - New year update and life stuff


3 weeks into the mew year and Bob hasn’t been out of the car. 

3 weeks of massively reduced smoking

3 weeks of drinking and the fasting 16:8 regime and if I’m honest I’m feeling really good.  

 We’ve been out and about a lot, lots of walking and towards the end my legs are sometimes getting weak and shaky, but we know when to take a break and it's working.

Last week was awful and tragic, once again I've lost someone from my life without any warning. A friend and colleague in his mid 30's with a 2 year old daughter had a massive stroke last Monday evening. Too awful for words really, so young no time to prepare, just a great big hole in all our lives. His employers are supporting his family and helping them make arrangements to get him transferred back home for his funeral in India.

 Work is insanely busy right now as we come up to the launch of  a big project, long hours, lots of meetings and a bazillion things that all need to happen now (or preferably yesterday).

The dogs are keeping us busy and cold in the evenings for walkies, we’ve also had a few new menu wins in the last few weeks – eating more healthily has focused us on menu planning and sticking to things – well apart from the accidental meal out last Thursday evening J what can I say the new leaf is turned over, but I’m not a saint.
On the planning front – sadly we’ve not booked a holiday yet for this year. We really need to be less rubbish with these things L

Bloods next Wednesday – hopefully the new dosage of thyroid meds have worked and that’s not running riot any more (assuming it’s okay because of not needing Bob)
Stay well much love
T
xx



Thursday, 3 January 2019

3 years 30 weeks happy new year

Another year done. I hope everyone had an awesome break for Christmas and New Year. Wishing you all the best for a happy, healthy 2019

The last 3 weeks have been manic with work Christmas 'doooooos', then travelling. Over the holidays I've driven 850 miles, so I'm now back in work for a rest.

Up to Yorkshire for Christmas with Gareths family (Via Knowle to drop christmas presents off for my brothers wife and her mum) 30 mile round trips each day to Baffles Dog Park to wear out the beasties - in Yorkshire this is a 3 hour endeavour (I was gutted last night when someone on a facebook group I'm part of posted that there is one less than 10 minutes from the in laws house) then off to deepest darkest Wales to see Aunty Kathy with a detour near Manchester to Fido's fields. Back home again via Knowle this time to actually see Karen and her mum (who were both away on our journey up)

It's been lovely to see everyone and catch up, some pretty epic food has been prepared and enjoyed. The dogs as usual were firm favourites with everyone, with Bella causing many tears up in Halifax as she reminds everyone of a young Jessie -their dog who crossed the rainbow bridge last year.

MS wise - well 7 days in strange beds took it's toll but it was managable, just the usual overly tired with pseudo symptom flares. A few days back in my own bed again and I can feel my legs again YAY - another few days of 'rest/work' and all should be back to normal again.

New year, fresh start time again, resolutions include
  • Dry January (Coming along nicely)
  • Smoke less (preferably nothing but less is good)
  • Continue with weight loss (coming along nicely)
  • Go to the gym at least 3 times a week (It's the 3rd - I've not been there yet - so 3 of the next 4 days it is then)
  • Be less of a bitch / angry about little inconsequential stuff (does it count if I was in car snippy at someone who couldn't hear me??)
  • Stop 'planning to do things but never getting round to them' - like holidays (Can't actually talk about this until later in the year)
This year I want to be positive, hopeful and most of all do some really powerful things to take back control of my own destiny whereI can, getting myself into something resembling a 'fit' state will go a long way towards that I hope.

Positivity - that's what this year is for - lots of positivity

Much love
T
xx

Tuesday, 11 December 2018

3 years 27 weeks - life took over for a while there.

Oh dear here I go again with the apologies.

It’s been 4 weeks - I AM SOOOOOO SORRY

What’s been happening? Well we did the good food show at the  NEC, I spent way too much money, I used Bob rather than trying to walk it, and it was a great day. Even drove there and back in the same day  sadly we didn’t get to catch up with any of the friends in the midlands because of timing and it being a work day.

Work has been seriously mad, so much going on, my early strarts are earlier and my days end later than they have in many years.

I have a new IV, he’s a good kid and loves sci-fi so I’m going to get to see lots of awesome movies that Gareth won’t go to see with me because he’s too much of an old man to appreciate them 😂

Today would have been my dads 78th birthday, it’s been 15 years since we lost him and for once I’ve not felt the need to try and choke down a bottle of  Newcastle Brown for it ..., he loved it, but oh my it makes me gag .... sorry Dad but I really can’t stand the stuff 😂

So Christmas is nearly here again, I can report that once again I have learnt bugger all frm previous years gifts haven’t been purchased, there’s not a single decoration up but the drinks cabinet looks epic  - sadly since we are off to do the great UK circuit with 3 dogs the cabinet will be spending the season home alone 😔

Christmas in Halifax with Gareths family and then off to Wales for a few days with Aunty Kathy, home in time for new year

I’ve also had my hair all cut off - I have short hair for the first time in about 20 years and I’m properly blonde again rather than a sort of ‘mouse’ colour with strategic highlights to make it less boring. It’s also so easy the take care of - wash and leave - i now understand why teenage boys prefer this look 😂😂😂

In health news - I’ve lost nearly 2 stone in weight in the last couple of months that’s 22lbs if you’re that way inclined or 10kg if you’re still working in old money 😎 I’m really proud of me for this.

Over the course of my adult life, my weight and I have had a very ‘up and down’ relationship - quite literally I’ve been every size between a 10 and a 20 on many occasions. I’ve tried every diet there is with varying success and enthusiasm.

Right now I’m simply following a very basic 16:8 fasting rule - google it there is loads of information out there - for 16 hours each day I don’t have anything with a calorific value and for the other 8 I have what I want but I don’t take the piss for me 11pm - 5pm are my fasting hours - I can sleep half of them which helps. During working hours I have black coffee and plenty of water to keep the hangry at bay

 a glass of wine, a G&T, a dessert or a few cheese and crackers is okay - an absolute load of any of these is not. Dirty Thursday dinner was chicken nuggets and French fries and I had a little chocolate later.

All things considered life is pretty fantastic Christmas is coming, a little calm and downtime will be very welcome over the season.

Again I’m sorry posts have been very sporadic of late, I’ve done such a lot of hours at work and when I’ve been at home I usually fall asleep after dinner. It’s getting better I have new team members on boarding and it will allow me to take a step back and concentrate on more strategic work than being too ‘down and dirty’ in the detail.

I promise to be less crap 💩

Wishing everyone an awesome time I will waffle at you all some more very soon

Much love
T
xx

Wednesday, 31 October 2018

3yrs 22 wks - New blood results and the price of not sleeping properly

It seems like I'm always saying sorry these days, I did post last week (eventually) but forgot to put the links in Twitter and Faceboob so I don't think many people saw it except those who have done the 'email me when there's new stuff' botton.
The full price of the damage to my back lugging the Whoppet out of the field, the agonising pain and discomfort came full circle this last week - the disrupted sleep brought me down with a cold - my bodies natural defence to lack of proper sleep is to give me a bad throat, snotty nose, a cough and generally make me fee like crap for 5 days.
Monthly bloods were taken a week last Friday so a good 6 days before I got grotty so they actully look pretty good for once - except the thyroid one - but the doctor has increased the dosage on my Levothyroxine and promised to get it under control.
As usual at this time of year I'm starting to vaguely acknowledge that Christmas is coming and I really should do something about that. As usual thinking about it is all we have done, Gareth and I had a specualtive chat about gift ideas for various family members over lunch at Pho in town over the weekend. We didn't actually agree on any particular plan or buy anything, but we talked about it - so that's better than the last few years I guess.
Dog walking at this time of year in the evenings after work is DARK ... very very dark, the dogs have neon light up collars, all balls glow and Gareth and I are wrapped up like arctic explorers with balaclavas, gloves, scarfs, thick coats, jumpers double socks, even Bella the Whoppet has a lovely warm snuggly coat to wear and we're all still freezing our metaphorical nuts off. Better get used to it because it's going to be like this until March LOL
In other news, we ordered another piece of furniture from Oak Furniture Land - usual delivery instructions of 'send on a small van - under no circumstances send on a 7.5 tonne lorry' - you'd think after last time and them makin  that someone might say 'oh shit it's them again' and not make the same mistake for a 4th time - wrong - once again a 7.5t truck parked up on the main road, 2 very grumpy drivers who've walked down the 200 + meters to our house and decided that they can't carry or push the furniture safely on a skate. Allegedly this is replanned for the correect vehicle at the end of the week - I will believe it when I see it.

So here we go bloods - a few blanks this week as I now get them online from my doctors and I couldn't find a couple of results.

Thursday, 25 October 2018

3 yrs 21 weeks - The correct way to carry a dog log distances

Aologies for the absence. My only defence is I managed to injure myself quite badly and have been off my face on medication for a while.
Bella the 'Whippet' (and I use that term very losely - the 62.5% whippet is counterbalanced with 25% German short haird pointer) is really more of a Whoppet. Had a strop about leaving the park because daddy wasn't there, lay down in the middle of the park and refused to move. I had to carry her the best part of the park back to the car and have managed to not only pull a muscle in by back, but trap a nerve at the same time. Co-Proxamol at full dosage, Diazapam to try and release the muscle spasm.
It took me a week to even go to the doctors about it, my power of postive thinking to heal stuff failed spectacularly I've struggled to even function through the pain let alone be a more constructive member of society.
Things to note through this time
  • We've had the inlaws down for a visit, it was lovely to see them and lots of catching up was done and lovely food eaten.
  • We went to the comedy loft in Reading and saw Reginald D Hunter again and it was very funny even though laughing hurt a lot
  • We've had 2 dog emergencies, one with Winston nibbling the fur off his feet and legs which is now resolved and the second yesterday when Amber managed to get access to a new bag of dog food and try to eat her own body weight in dry food - she looked like she swallowed a football, there was much being sick, her arse falling off, uncontrollable flatulence - I'm hoping by the time I get home this will have lessened.
  • I've been signed off from the grief counselling sessions I've been having in recent months. I'm in a happier place now, it's never going to be alright about the number of people I've lost, but I'm okay that it will never be alright - if that makes een the slightest bit of sense
  • We had Kim and Lasse over for dinner again, a masterpiece of a combine come dine with me experience with lots of my lovely specility spare ribs to start, Gareth awewsome indoensian peanut chicken with egg fried rice (done properly not that wierd rice that looks like it has scrambled egg stirred through it) and then Kims amazing home made warm cinnamon rolls for dessert
Since then I’ve been flat out at work and what with a couple of weeks of crappy sleep because of my back ..... well now I’ve got a cold. I’m feeling properly sorry for myself, Gareth was crying with laughter this morning saying only dogs could hear my voice. After a bazillion gallons of pure honey and lemon juice the pitch has now lowered to Barry White but with a touch of baaaaaimg ..... like a sheep 🐑 I threw up 3 times in the field walking the dogs tonight but felt a lot better afterwards. 

Swings and roundabouts I guess by Monday when I’m back to work I will feel perfectly fine. In the interim I will banish myself to the spare room, the only beings in my house who will be kissed for the next few days will have 4 legs and tails.