3 years 42 weeks - Sunshine, lots of energy and Levi 501's

A week of intensive sleeping (outside of the work thing because doing so at work is rude and apparently unacceptable) J

Last week was a long and sleepy one, Bob was retired again at the back end of the week once my 12 hour sleeps each night helped put me back on track. It made for Tracy being a very dull girl though and Gareth got lots of game time.

Amber is back to her normal beagle self, following her nose, staying on her feet mostly and only falling over occasionally as oldies tend to do.

I think the new dosage of the thyroid meds is kicking in now, I’m feeling more human again – I’m looking forward to my monthly bloods at the end of next week, I’m hoping they are back in a more normal range again. The Gabapentin that the spinal surgeon gave me for the C7 vertebrae / bulging disc thing also seems to be doing something right, I have sensation in my arm again and the aching has become much less than it was (YAY no more sitting in the back of an ambulance with an ECG hooked up)

The sun is shining here today, it looks glorious out the window, but the brutal wind definitely takes the pleasure out of going out to enjoy the free vitamin D supply.

Tonight I’m off to sign the paperwork for my new car, another Ford Tourneo because van like or not it’s the most comfortable, practical Dog and Bob mobile there is. The new one is shiny silver rather than grey and it has heated seats this time (sadly not leather) so I’ll have a nice toasty bum when it’s cold (which hopefully will be not needed for many months) Should be picking the new ‘little (not little at all) car’ before the end of this week.

Last but not least – I’m sitting here at work wearing skinny Levi 501’s with my lovely cowboy boots. The weight I’ve lost recently is really helping with my mood, my outlook on life and my self-esteem / confidence. It’s been a really long time since I’ve just picked up a pair of jeans, eyeballed them and gone to the till with them. I got home pulled them on and felt awesome. It’s been a long time since I could do that – it’s been a long time since I even considered anything other than ‘fat’ supermarket cheap jeans. So I’m rocking my 501’s and feeling very happy.

Hope you have a great week and that there is awesomeness in it for you – much love

T

xx

3 years and 41 weeks - 37 hours awake messes with you

The epic weekend of working is done. I started at 7pm on Sunday night (nice way to spend my birthday - not) and finished at 6pm on Monday night. This was not helped by being awake at 6am on Sunday morning and not managing to get any sleep during the day - although I did have a rather lovely lunch at Pho - an awesome Vietnamese restaurant in Reading.

Total scores on the doors

Total time awake : 37 hours
Total time at work : 23 hours
Total time asleep when I finally got home : 12 hours

Back in the office at 08:10 Tuesday morning, Feeling more than a little jetlagged but the wheelchair stayed in the car not in the office so that's a win

Weekends like this happen very infrequently in my line of work. I'm the Senior Program Manager but when we have big implementation weekends like this my projct managers, test guys developers and Integration managers are all up and working these hours as well so it's only right and fair I'm there to support them to manage escalations or issues when they happen. Technically I'm no use when it comes to actually performing whatever actions are required to fix things, just co-ordinate stuff, but when it comes to keeping people fed and fuelled up with coffee and redbull (other energy drinks are available) to keep them going, to ensure if someone does need to stop or take a break I can swap them out for a fresh resource - that's my role.

It's unusual for someone in my role to stand up with the team through a whole window with the guys, but to be honest for me it's a duty of care thing, I shouldn't be asking anyone to do something I'm not willing to do myself.

Today I'm even more knackered than I was yesterday, Bob's been liberated from the car and in the office with me. I hate that I need him, but it is what it is *shrugs shoulders*

Amber-dog had what appears to be a mini stroke last Friday, she was awfully wobbly all over the weekend, falling over constantly when she tried to get up or when she was on her feet. It was awful and heartbreaking to watch, but by Sunday afternoon she had improved to just looking a bit drunk. We have to accept that she's very old now and it's going to happen some time soon. I'm not going to be ready for it, my Mum won't need me to look after her baby any more, I'll never be ready for that.

There is no other news in my life, it's been work, more work and a little more work and everything else has been sleep.

I'm a very dull person this week - sorry :-(

Much love and wishing you a great week xxx

3yrs 40 weeks - Blood results and staying up all night

An unusual time for me to be posting, nearly 2am on March 4th, uner normal circumstances, you might be thinking that because yesterday was my birthday that I'm up late having been partying and possibly a little 'under the affluence of incahol'

Sadly this isn't the case, I'm stone code sober and sitting at my desk in the office rather cold and approaching the mid point for an overnight implementation. I'm running on coffee, domino's pizza and a side order or pretty grouchy if I'm totally honest. It's going well so far though so that's good.

I've been here since just after 7:30 last night and expecting to still be here until about lunch time today (feel quite sick just typing that if I'm honest) It's going to take me a good couple of weeks to get over this and get my sleep patterns back to something approaching normal.

My February blood results are finaly fully available the TSH was the late commer to the party as usual. After suddenly going Hyper last month resulting in yet another change of medication dose.

I was hoping for a bigger change if I'm honest but it's been a relatively tiny one, but then changing levels on Levothyroxine is a little like trying to turn an aircraft carrier in a small harbour - a 927 point turn thats going to take a LOOONG time to complete. Hopefully a more stable reading next month.

In other news my doctor referred me to a Spinal surgeon about the numbness in my left arm. The MRI's have once again ruled out MS being the root cause of the change so those nice people at Bupa have paved the way to get me looked at quickly. Turns out I have some 'narrowing of my C7 vertibrae with inflammation pushing the disc bit around to somewhere it shouldn't be and pressing on nerves.

Humourously the first line of attack to help resolve this is to put me on Gaberpentin to try and help deal with it (LOL - never needed the damn stuff for MS) we are giing it a few weeks to see if it makes some difference and if not he's going to put a needle in my neck and inject the area with steroids GULP ;-(

Amber-dog has had a 'funny do' over the last few days with her balance and back legs going, a mini dog stroke type event, but she has been much better today (yesterday now given the time) we were both pretty shaken up by it as we were with her last 'funny do'  few weeks ago. She was mum's dog before she was our dog, the last thing that my mum 'needs me' to do for her, to take care of her baby girl - I'm not ready for my mum not to need me, I don't think I ever will be so she has to keep going for ever.

So I'm sitting here at stupid o'clock in the morning, absolutely exhausted and contemplating another coffee and blathering at you to keep myself from snoozing - sorry about that, I'll stop now and let you all rest.

Take care, much love and ZZZzzzzzzzzzz

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

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 1^st class upgrades going both ways.

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

Anyway those blood results .....

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

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