Wednesday, 13 June 2018

3ys 3wks - magnesium experiment update

I feel I should really apologise in advance the mini ‘flurry’ of posts last week (well 2 of them) has left me thinking there’s not really anything even remotely interesting to report this week except an update on the thyroid / / menopause / magnesium experiment..

So far I’ve only tried the liquid form of the magnesium, my logic being because it is in a more absorbable form that it might have an effect more quickly. The Levothyroxine I know will take far longer to actually show some changes, although perhaps little changes in the bloods that are being harvested on the 22nd. It would be nice to see those TSH numbers dropping a little again they’ve been steadily creeping up this year along with that all important T4 number.

Serum Free T4 = 11.8
T4 11.3 PMOL/L (12-22)
MU/L (0.27-4.2)
T4= 13.2

So anyway interim results on the Magnesium trial – I feel better, I’m less tired, I have more energy than I did (but I’m not going dancing any time soon) things ache a little less, and surprisingly the twitchiness of my left foot has dramatically reduced - I would have said gone last night but it gave a couple of minor jumps while I was stretched out on the sofa I’ll stick with drastically reduced for now.

I feel brighter – sorry that’s a rubbish description but it’s the best I can do – perhaps it’s the sunshine, that I got a compliment on my weight loss, that I’m wearing summer dresses to work. It could also have something to do with some really great news I’ve received that I’m not in a position to share yet.
So tonight is Pilates, and the lovely Vicky is back and assuming there are no pipes of torture tonight that should be enjoyable, Bella’s back at dog training tomorrow, some dog walking planned for the weekend and very little else. Life is awesome and I’ll stop blathering on now and let you get back to important stuff.

Take care, much love

Friday, 8 June 2018

3yrs 2 weeks - the power of positivity and dog training with grated egg

It is incredible how doing something positive, even something small can just really put me in a ‘better’ frame of mind. Something really simple; being proactive and going to see the doctor to say that the medication for the thyroid needs addressing, and to ask that he checks if I’m going through the menopause.

I love appointments with Dr B he’s such a positive person and I think that because I don’t take a great deal of time and am familiar with what is going on with me helps. I asked for a repeat of the pain meds prescription that I got at the start of the year (I have 26 tablets remaining – so that’s probably a month or a month and a half left but there is no need to have to take another appointment just to deal with that). The Levothyroxine is now doubled so fingers crossed that starts to have some effect. And the FSH Test is registered on the system so that when my monthly bloods are done on the 22nd only 1 hole is needed in me to extract the goods.
Yesterday, the powers of Facebook where I have a number of school friends yesterday told me that actually a lot of the ladies from my year are all in that ‘here comes the menopause’ phase of our lives, some really great advice and information from the others has resulted in me abusing the Amazon prime subscription once again. I’ve ordered some Magnesium Citrate supplement (a liquid one and a tablet form one) – a little research makes me quite hopeful that it might help with the achy bits, fatigue and my twitchy left leg, for £5.87 it’s got to be worth a try for a few weeks, nothing ventured nothing gained.

Gareth and I are both still doing Pilates each week which is improving our core strength no end – although this week the lovely Vicky was away and left her evil friend to run the class – OMFG the pain yesterday in my upper back, chest and arms was horrendous – I literally felt like I’d been beaten. Perhaps it’s because she’s a more effective teacher and worked me harder (which is a good thing) but I think the next time Vicky has a week off I might too J.
Last night was Bella-dog’s first night at beginner training classes. Joy of joys we didn’t have the most disruptive dog in the room. The most easily distracted in the recall exercise through ‘distraction alley’ absolutely she was the worst, not because she wanted all the distraction toys and tennis balls, but because she decided to have a good old wander around the room and say hello to all the other people there J.

It’s Friday, the weekend is nearly here, I’m in the office (well for a half day I’ll probably go home at lunch and WFH for the afternoon). I’m now 3 weeks done in my new job, the time has flown by and I’m so happy to be back here again. The environment, atmosphere and people is so familiar, it’s professional, logical and organised which makes the control freak in me very happy.
The weekend apart from the usual dog walking activities, shopping, oxygen therapy seems to be blissfully clear, I’m planning on a few early nights, nice long morning lie ins and some lovely healthy BBQ’s with fresh salads and yummy stuff (assuming that the weather will behave itself at the required times – according to the weather app it ‘should’ be all good)

Bella-dog now has her crate for while we are out at work, she’s okay with that as long as we leave her with the indestructible Kong to nibble on – which is infinitely preferable to her chewing her way through every bit of woodwork in the house (in a Victorian cottage there is a LOT of wood to chew on)
I’m waiting to hear about arrangements for the send-off for Tiffany and work out logistics. Her funeral will be in BC / Vancouver area, but there will be another memorial at a later time in Ontario. Today would have been her 26th birthday so it’s desperately sad that there’s no celebration, cake and drinks pictures being posted from the top of a tree or the top of a mountain. Just really grateful that we got the opportunity to talk and reminisce before she went and that the last thing I said to her was ‘I love you’ it makes a big difference to know that things were left ‘right’ if that even makes sense.

Winston doesn’t know it yet but he’s currently receiving the training that Bella had last night at class. So far none of the beasties can take their eyes off me and the reward value of minced hard-boiled egg seems to trump everything (not the orange one J) (and certainly no hard-boiled egg for the flatulent beagle – that just inviting an end of days scenario for the hoomans in the house JJ)

And now one other thing added to the weekend schedule – I’ve just booked Gareth in in for ‘A Good Grooming’ tomorrow at 13:45 – so hopefully by the time I get back from being gassed he will look a lot less ‘fluffy’ (yeah that’s a better word than scruffy J)than he has of late.

Signing off to go wash my hands now because my fingers smell of hard-boiled eggs – perhaps not my best idea of a reward after all J
Much love


Monday, 4 June 2018

3 years 2 weeks - heartbroken again and an inspiring man I know

Enough now please.

There are times in my life were I sit back, take stock and then need to deliver myself a resounding kick up the arse, tell myself to man up and stop being such a wet.
Today is one of those days.

My friend lost his beautiful 25 year old daughter yesterday
My friend lost her beautiful 25 year old sister yesterday

The beautiful 25 year old girl I regarded as my ‘niece’ because her dad is one of my ‘acquired brothers’ left this life yesterday
Leukaemia is a shitty shitty thing.

So my thyroid is a bit funky, MS is annoying, I suspect I’m going through the menopause.
So what?

I have choices and time – Play the glad game Trace …… simply because you can
If I can get over I would like to be in Canada for her send off, but the logistics of a new job, no annual leave accrued yet might actually make that impossible. Sadly logistics meant we couldn’t get there for her wedding either.

I’m sorry it’s ‘that time of year’ again, Tiffany’s passing simply adds to the loss of Ian and the anniversary in 2 days of losing Dad, and hey the 23rd would have been Mums birthday, the 24th Ian’s funeral – I get so sad and maudlin at this time …..



Yesterday I had a drive up to Evesham to see my lovely friend Phillipa for the day. It’s been far too long since we gossiped and put the world to rights. I got to see the lovely new home she has, we had an awesome lunch with fresh season Asparagus and there were lots of hugs.
I’m off to see Dr B on Thursday for that lovely thyroid review and the discussion about menopause. Bella starts puppy training later that evening, I’m hoping that it will be a lovely experience with her rather than when we took Winston all those years ago and we discovered we really did have the ‘disruptive problem child’ in the class – LOL

Gareth and I are still doing Pilates together on Wednesday evenings and whilst at some points (when using the hilariously named ‘foam rollers’ which are actually as comfortable to lie on as concrete drain pipes) it can be incredibly challenging I think we are both getting a lot out of it.
I had a proper ‘moment’ on Saturday night, someone I went to school with posted to FaceBook that for the last 6 months he’s been undergoing treatment for Prostate Cancer and that he has beaten it. He’s such a big strong man and it seems inconceivable that over the last few months when I’ve been admiring his attendance of rock gigs and the like that he’s been facing all this. Prostate cancer like MS is something that people just don’t talk about. That whole ‘stigma’ thing I guess. It’s the biggest killer of men in the cancer stakes – it’s their breast cancer and nobody talks about it let alone celebrates that caught early it’s also eminently curable.

We should all talk about these things and keep them out in the open, to reduce the stigma associated with uncomfortable conditions raise awareness of what they are, what the signs are and how they can be defeated. The silence gives these shitty things power – an avalanche of voices and awareness will take that power away.
So big shout out to Mick – you’re bloody awesome mate and long may you continue to kick prostate cancer up the arse (pun intended).

Life remains awesome and wonderfully MS free and I promise to pull myself out of my annual ‘funk’ soon.

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

Friday, 27 April 2018

1yr 49wks post R2 - Adventures in Pilates and Bread Making

Hi all apologies for the absence, the whole face as a brake incident knocked he stuffing out of me for a while there. The minor concussion really wasn't nice and I had some interesting cuts and swelling.

All systems normal again here at Casa Doust, too many beasties, the weather has now cheered up, we had a 3 day mini heatwave last week which had me breaking out the summer dresses and my walks with the pups are so much less muddy now the ground has all dried up.

We made a small start on filling in some of the pot holes on the lane that the winter had gifted us which has made the neighbours very happy a couple have volunteered to assist with the next round of filling (it might have something to do with the fun you can have swinging a lump hammer and sledgehammer to beat the hell out of something)

Gareth and I last night went to Pilates together for the first time and it was actually really good, very relaxing and I'm not busted today as a result of it which is a relief. I did discover that my core isn't in bad shape, my legs not too bad overall either, but my arms apparently are not quite as weak as new born kittens but they certainly aren't as strong as I'd thought they were so that's going to get some attention.

I made my first Wholemeal SourDough bread this week from scratch - I can honestly say it was an unmitigated disaster, it didn't rise properly, the air bubbles were tiny, quite doughy in the middle and worst of all tasted very much of the starter rather than the nice gentle taste. It went straight in the bin. I will have another crack at it later following the strict guidelines of the lovely Hugh Fernley-Wittingstall to make a white one and see if I can manage to not arse that up.

It was Gareth's birthday last week (not an excuse for not having posted for 3 weeks) we went for a lovely meal at L'Ortolan down the road from us as part of the celebrations of him now only being 7 years younger than me for the next 43 weeks.

Bella-Puppy-Dog has settled in well, she's house trained and apart from some minor cat bothering she's the perfect addition to the family. Craig the most awesome trainer in the UK is coming up next Wednesday to do a little work with us on being calm (and not cat bothering) I'm also hoping that given the timing we've planned that perhaps a little refresher for Winston might be on the cards as The Postman (also known as Armageddon) should arrive at approximately 30 minutes after Craig does.

All in all life is awesome, the MonSter is in hiding, I'm happy and relaxed and loving it.