Tuesday 29 May 2018

3 years one week - All change again + Month 36 blood results

I started a new job last Monday; it's been a wonderful manic week with a vertical learning curve. I've renewed acquaintance’s with so many people that I have worked with through the years and exciting to be getting back to my roots in the industry that I've come to love.

Gareth and I have both lost almost a stone doing Tom Kerridge's Dopamine diet (low carb high energy) and are both feeling a lot better just for that little bit of progress. We've had a relaxed weekend diet wise (Gareth being considerably more 'relaxed' than I was - the scales are going to take their revenge on him for that)

Bank Holiday Monday is best described as 'revenge of the drain' day. The outbound pipe from our downstairs loo became backed up and we had to call DynoRod out to 'rod and spray' it - £205 inc VAT (on a bank holiday - could have been significantly worse I guess) and a lot of nasty stuff flushed through the pipe along with 2 rather massive chunks of pottery which were in the drain and our toilet now flushes again thank goodness.

We've had the gardeners in too, painting our picket fencing and the shed, our lovely olive tree 'Oliver' is now planted in the ground, the hedges have all been trimmed and the patio looks brand new having been jet washed back to the lovely sandstone colour it naturally is rather than the grubby grey it had become.

Today is a difficult one for me, not that I needed it, Facebook reminded me of our terrified dash up to the midlands May 29th 3 years ago when we received the news that my brother was critically ill in hospital and the next 24 hours were going to be critical. Sadly he didn't make the 24 hours, my beautiful 40 year old 'baby' brother lost his fight for life in the face of multiple organ failure. I absolutely can't get my head around him being gone - for 3 years - how can that be? I'm still wrapping my head around Mum and Dad being gone, but Ian as well?

So I'm posting today before tomorrow comes round.

I got my month 36 blood results through last week. Nothing really exciting about them except that my funky thyroid doesn't actually seem to be responding to that little Levothyroxin I'm taking each morning. It's getting worse not better. I have an appointment with my GP, Dr B on the 7th to discuss the fun topic of 'menopause' so I guess a little hypo thyroid chat will neatly round off the ‘middle aged and slowly rotting away’ conversation LOL

On the thyroid note – bloody thing has knocked me on my arse – I’ve always proudly said I get tired with MS but not fatigued – I now know that was a correct assessment of the situation

*blows a raspberry in the direction of my old Neuro who said I was down playing it*

I now know what if feels like, the sad sure knowledge that the shop mobility scooter you’re on hasn’t been on charge for long enough – it’s getting slower and slower and you know it won’t get you back. It’s like someone sneaked in and took my batteries out at the oddest of times. The heat over the weekend has certainly contributed toward this, it’s been an interesting learning experience.

So here there are the scores on the doors for ‘month 36’ – the big 3 year mark.

I still maintain that Lemtrada is the best decision I have made in regards to taking control of the MonSter

Friday 18 May 2018

3 years as a Lemmie - Happy 3rd Re-Birthday to me

3 years ago today I went in for Day 1 Round 1 - I class this as my Re-Birthday as it was the start of taking back control of my life again.

So as promised here is the Previously on TLJ recap

May 2015 - Now

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 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
  • 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
  • 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 :-)
  • 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.
  • MS Disease Activity - NONE - for 3 years now I have been NEDA - No Evidence Disease Activity. This is the big one really, no new lesions, no active lesions, the old lesions are doing what they do and breaking down into nothing - that's what they do the break down disappear and leave a hole where they were and your brain shrinks back in to fill the space where the lesion was. When the brain shrinks its called brain atrophy it ends up looking like a peach stone after all the fruit is removed and with MS it happens much faster because of the number of lesions we collect - so YAY my brain is only shrivelling now at the 'normal' rate.
What I did not have then that I do have now :

  • A Hypo Thyroid - I knew from the start that 30% of us win the thyroid lottery and had always hoped to miss out on that winning ticket. It started coming in January this year and just kept coming. I'm now on a LevoThyroxin a day to 'medicate' it. Strangely a lot of they symptoms for HT are very much MS-like. 
    • Whilst I never referred to the tiredness as fatigue for MS, damn but did it punch me in the face for the Thyroid. 
    • Joint pain / muscle pain - I've been such a decrepit old bat with back and hip pain
    • Weight gain (well at least I have something to blame it on now I guess)
    • Slow movement - see joint pain
  If I'm honest whilst its a pain in the arse (not literally) given that 3 years ago today I was losing my sight, I was walking with sticks. Trying not to wet myself and all that other fun MS stuff. It's such a small price to pay.
  A little thyroid tablet and some funky new vitamins and it's all stabilised now and while I'm not dancing at this one, but I'm happy that if this is the swap for MS then so be it.
  • Onset of the menopause - Well I'm 46 now and it was always on the cards, Mum was 43 when hers started so I guess it runs in the family. I have an appointment on June 4th with the doctors about this one, but the night sweats, the headaches, the periods that just don't happen that have followed from the horrendously painful and heavy ones - it's all pointing that way. I'm okay with it, since the inside bits don't work anyway it's always seemed a little unfair that I had to go through the monthly's for the defective bits.
To this day I absolutely do not regret my choice of Lemtrada

Apologies, I'm repeating myself again, but the last 3 years have flown by so very fast. So much has happened, a lot of it awesome and amazing and some losses which have been heartbreaking and broken me into a million pieces. The love and support from Gareth, my Aunt Kathy, Gareth's Family, our friends and those that I have met online, talked to by phone, met in real life or just exchanged emails with has been incredible - I don't know what I would have done without everyone. 

EDIT - I've just realised reading that back it looks like I'm planning to stop waffling at you good readers - I'm not - I said I'd keep this going for the long term no matter what and I meant it,

I've been for my monthly bloods this morning, so that's 3 years out of 5 for my monthly stabbings done and dusted too. Results will be published early next week, you never know perhaps the thyroid will have decided to behave itself.

So roll on Monday, blood work back, a new job to get stuck into weigh in Tuesday morning to see how much weight I've shifted doing Tom Kerridge's Dopamine diet - 5 lbs last week was a good start but there's a lot more to go. 

The sun is shining, it's a beautiful day and the future is bright, I'm off out to walk the dogs at K9 in the sunshine and then BBQ'ing some lovely Wagyu Burgers for our dinner. I may even indulge in a cheeky G&T tonight as a nightcap.

Before I go, if you're looking for more awesome MS Warrior stories please take a look at Claire's story - a very funny and down to earth lady who likes a glass of wine


Thursday 17 May 2018

1 y 51 weeks and 6 days post Round 2 - Tomorrow is my 3rd birthday as a Lemmie

I feel like I should throw an online party, or bake a cake or something, but tomorrow it is my last day in year 2 - it will be 3 years since the start of my Lemtrada adventure.

My apologies for not being more active for the last few weeks, there have been some big changes in our world.

The puppy has settled in well and grown in confidence. Sadly this has also come with a side order of 'cat bothering' which we are working to control - fortunately on Bella-Dog's side it's all play and no malice and BamBam-cat is too chilled to really take a swipe at her.

We've had some time at the allotment checking out the national surplus of onions, garlic, strawberries and rhubarb (not all bound for the same dish).

Gareth and I are both on Tom Kerridge's Dopamine diet (low carb) together and have both lost 7lb's and the wine consumption in our house has dwindled to nothing.

And last but not least - I'm starting a new Job on Monday. Back in the Telecoms world that I love so much. I'm really excited about what's to come, I've worked there before, it's not a completely new an intimidating place because I know people there already. The work is going to be 'transformational' to say the least and inspirational too I think (no I'm not typing that because I think they might be reading - but it you are 'heya - see you Monday')

We've had a few weeks of pretty solid sunshine here in the UK which has been such a lovely thing. The Costa-Del-Berkshire is a lovely place to visit right now, bring a picnic, a hat and some high factor sun cream because you're going to need it.

So after a long silence, I'm so sorry this is a short and rubbish update, but I'll post again tomorrow for my online Lem-Birthday Party

Lots of love to you all xxx

Yikes 2 posts in a month

 Who is this person who's actually updating Tracy's blog I hear you wondering .... 2 posts less than 3 months apart - surely I'v...