Week 43 - only 9 weeks left EEEK

EEEK DON’T PANIC MR MANNERING

That’s probably not going to mean much unless you’re of a ‘certain age’ and have seen the original TV series of ‘Dad’s Army’ which was a hilarious representation of the home guard during the world war.

I’m now into a single figure number of weeks on the approach for round two of Lemtrada. HOLY HECK BATMAN – KAPOW – take that MS bad guy. (I might be losing it a little bit here – LOL)

It’s time for me to go back fully into preparation mode for round two, not just the ‘faffing around paying lip service to it’ routine. I’ve always been pretty good about making sure I take onboard a lot of water, but it’s time to actually start measuring it and tracking it again. I’ve broken out my Brita water filter bottle and am dragging it everywhere I go. To encourage the healthy lifestyle I’m going to substitute as much of my diet for Cambridge products as I can and go low carb again – this will mean NO WINE if I’m going to do it properly. If I suddenly disappear there’s a distinct possibility that the excess of blood in my Wine System has caused and unexpected malfunction (I did this last August and my lymphocyte levels seemed to go into shock and dropped unexpectedly – not a massive amount but enough for me to think ‘yeah perhaps try that later on Trace’)

I’m going to buy one of those daily pill dispenser boxes too and preload the sucker with my self-designed cocktail of vitamins, minerals and supplements – if you’re interested this is what I use

Turmeric tablets (YouTherory brand)	x 3 tablets = 1350mg
Cod Liver Oil High Strength Capsules	x 1 capsule = 1000mg
Omega 3 Fish oil high strength Capsules	x 1 capsule = 1000mg
Vitamin D capsules (Kirkland brand)	x 3 Capsules - 50μg (2000 I.U)
Calcium and Magnesium	x 1 Tablet = 500mg Calcium + 250 mg Magnesium
Glucosamine & Chondroitin (Kirkland Brand)	x 3 tablets = 22,500mg Glucosamine + 18,00mg Chondroitin
Evening Primrose Oil	x 1 capsule = 1000mg
Multivitamin High Strength (Holland & Barrett)	x 1 / 2 tablets – depends on the day
Emergen-C Energy release & Immunity Support	x 1 or 2 sachet’s – depends on the day

 

We had a nice quiet weekend to make up for a pretty hectic week, I spent 4 days in our Bracknell office last week which makes for  much slower and traffic heavy journey into work, rubbish parking and huge distances to walk around the building. The tracker on my phone said I walked 4k on one of the days going from one end to the other repeatedly for meetings – fortunately this was the day I forgot to change into my boots and went to work in my flat dog walking shoes!

I have physiotherapy again tonight for the remaining effects of the impinged nerve in my shoulder, I’m hoping it will be the last one so that I can say it’s all resolved and avoid surgical intervention with the slippery disc in my neck that is not in the right position but causing me no problems at all.

Tomorrow after work we will go and see ‘London Has Fallen’ at the Showcase Cinema which has the most amazing fully reclining seats and surround sound that literally sends sound waves up through your bum. It’s probably not great for my long term hearing prospects but it certainly makes for an awesome experience. I’m hoping I won’t sleep though it as it starts at 19:40 which is usually when I start nodding off on the sofa.

Friday is ‘Stabbing and peeing on your fingers trying to hit the target of that tiny bottle again Day’ or as it’s more commonly known ‘Lab’s day’. I’m being incredibly brave this month, my usual lovely nurse who’s a ‘One Stab Wonder’ is on holiday so I’m going to the other one (month 1 labs person who left me full of extra holes and blown veins) she gets one last chance and if it’s more than one hole never again even if I have to throw my test schedule off a bit to see the lovely Carol. I’ve grown very protective of my veins in the last year, when you have to do this every month for 5 years it’s important to minimise the number of attempts they make. I really don’t want my veins collapsing and them having to take blood from horrible places like my foot or my ass cheeks!

All systems MS wise are functioning within normal ranges, I’m doing great, even wearing new boots that have a slimmer and higher heel than my cowboy boots (they look so pretty with Jeans) I tediously have no further improvements (well the only thing left to improve now would be the getting tired thing – it’s not fatigue I live life normally – I just fall asleep in the evenings when I get home on the sofa A LOT)

Week 42 Birthday's and Visitors and Sunshine

Now I’m technically 44 and I’ve had a lovely weekend. Gareth took me out for dinner at Tylney Hall on Thursday night for a fantastic meal. I now know that I really love Quail (well I loved it the way they served it) and that Eton Mess can be served absolutely beautifully with ‘Happy Birthday’  written in chocolate on the plate (the handwriting was far more beautiful in chocolate than I have ever been able to do with a pen)

It was a beautiful day when Aunty Kathy arrived on plan on Friday afternoon and we did the ‘tour of the house’ thing and then took the dogs out for walkies. At this point the weather turned decidedly nasty; during the course of an hour long walk we had hail, snow, rain, wind and finally a little touch of sunshine to add insult. We were both soaked when we got back to the car with muddy sand covered pups, Kathy being better at the outdoorsy thing was warm and dry inside her jacket – my jacket was soaked through to the inside, my hair was dripping ice water down my back and it was one of those walk where I felt decidedly miserable at the end of it.

Friday night we went to L’Ortolan again for dinner and once again it was truly epic, treating yourself to a meal like that occasionally is good for the soul even if it’s very painful on the bank balance. The weekend was all rather civilised really, we went into town and did some shopping I bought my first pair of jeans in over 2 years and whilst they’re a considerably larger size than I’m happy with they look pretty good especially with the very nice boots I bought that have a 2 inch heel that isn’t anywhere near as massive and chunky as the one on my previous pair – And I can walk in them and haven’t killed myself yet WOOHOO.

I cancelled my Oxygen Therapy on Saturday morning so that we would be able to spend more time with Kathy, it’s not a huge thing, it’s become quite common place of late for me to duck a week here and there to make time for something real life related.

A much more pleasurable walk on Saturday in the sunshine, the Mead was very quiet and we were brave and let Winston completely off lead, he got to run and play without being on the long line; by the end of the walk both Winston and Amber were completely knackered from playing chase the ball (sometimes bring it back) and hunt the treats thrown into the long grass (always successful that one) they were both soaking wet and filthy from mud and sand. A particularly epic delivered Chinese takeaway and Terminator Genesis on the movie channel rounded out the night.

I was so sad to see Kathy go on Sunday morning, it was all very emotional with it being Mother’s day and my Facebook feed showing me lots of memories of my Mum, it really hit home hard that this time last year and the year before my brother and I had talked about how difficult it was for us to see everyone celebrating with their Mum’s and ours is no longer with us. I felt really bad getting upset in front of Kathy, as Nana was her Mum, it’s her first Mother’s day with her Mum gone too, my Mum was her sister, my brother her Nephew. It’s selfish of me to fall apart like that when it’s so painful for her too.

In a way this weekend has started me thinking I need to re-evaluate things a little. I need to start taking better care of myself. Not just the MS stuff but the life in general stuff too. It’s a bit late in the year for new year resolutions, but this is my new year – the year of being 44 and my last one during which I can say I’m closer to 40 than I am to being 50 (bloody hell that’s an uncomfortable thing to type)

So here are my ‘New Me’ resolutions

• I AM going to do more exercise
• I AM going to eat more healthily
• I AM going to get back to a weight I am happy with
• I AM going to moderate my Wine consumption
• I AM going to cut down on the cigarettes
• I AM going to procrastinate less (because that’s why all the other things above are still a problem)

I’m working on the theory that all this is too little, too late for it to be a major improvement by the time I go in for round two of Lemtrada in May but it certainly can’t hurt (much) I figure if my weight is reduced, I’m more active, there’s more blood in my alcohol system and less tobacco then all this has to be a good thing right (see I’m procrastinating already – BAD TRACY)

By the end of next week Month 9 will be done and dusted, I’ve got my monthly bloods and pee next Friday and I’m hoping that the Lymphocytes have gotten over their mass suicide event when they finished fighting the bug I had over Christmas / New Year / January and have popped back up to something more normal again.

All things considered life as always remains pretty epic and I’m thankful that I’ve got this opportunity to take charge of my MS and teach it who’s the boss of me.

Week 41 - Birthday week

The sun is shining the sky is blue what more could I ask for today? A longer weekend, a nice extra-long sleep lay in bed, not scraping ice off my car with a Shell Petrol Card at 07:25 in the morning before a frustratingly slow drive to work with Monday morning Middle Lane Morons clogging up what would be a perfectly functional motorway if people used all 3 of its lanes, the heating at work to be sending heat instead of recirculating cold air?

Actually it’s all good. Our cleaner quit on Friday which wasn’t a surprise, she’d not been for a couple of weeks with varying excuses but thanks to t’interwebs I had a replacement sorted by midday and at the same cost BONUS. I had an early oxygen treatment Saturday morning; we got the shopping done and all the other bits and bats we needed to get done.

The ‘Anti-Pollution Warning’ light coming on in my car (again) but thanks to some patting the steering wheel and threatening it ‘if you start costing me lots of money you’re going to the knackers yard’ it appears to have healed itself. The fault has gone away – perhaps my overactive MS immune system also healed the sensor on my car’s catalytic convertor – an interesting new career opportunity perhaps?

Sunday started with a lovely long walk with Gareth and the dogs in the sunshine. It’s so lovely to have Winston chasing balls, he’s so much calmer these days now he can get the exercise he needs because we aren’t scared he’s going to just disappear every time he sees something remotely interesting, people, other dogs, birds, a leaf blowing in the wind….

I have some exciting news - although now I’m not classing it as MS related. The loss of sensation in my left hand to my thumb and first two fingers and the palm bit that connects them is actually improving. I’ve known it for a week, but didn’t want to jinx it by saying it out loud. The electric sensations started lessening last week and now over the weekend I’ve had Gareth testing the sensation with the lightest of touches – I can feel ‘touch’ there again in both my fingers, the palm and back of my hand. The thumb remains profoundly numb and has the electrocuted from the inside out sensations but hey I now have pretty much an 80% fully functional dominant hand. I’m pretty sure it’s the physiotherapy exercises that are helping it return along with me being far more aware of my posture so I’m not sitting in that hunched over position to read or type at my work desk. I have another physiotherapy session tonight so I will tell them I’m getting sensation back and see what they recommend to make further improvements.

MS wise I’m tediously ‘normal’ I still get tired if I overdo things but I manage that more effectively these days. MS certainly isn’t the root of all evil for me, I’m overweight, I don’t exercise enough and I’m really quite lazy. If I proactively did something to address the first two things then I’m pretty sure that it would help with my energy levels and stamina – but then the lazy kicks in and the little devil on my shoulder whispers in my ear ‘can you really be arsed with all that – have a glass of wine and forget about all that nonsense’ He could sell snowballs to Eskimos that little devil on my shoulder - well that’s what I keep telling myself; perhaps I’m weak as well as lazy?

Any pretence of dieting or healthy eating is going out the window on Thursday I have to go and buy a load of cakes to bring into work for my colleagues to enjoy in honour of it being my birthday. I’m going to be 44 years old (officially) in reality I will be celebrating my 27^th birthday again.

Why 27 you wonder …..

Well …..

27 was a good year

• I earned enough that I could live well
• I was sensible enough to protect myself from things that could hurt
• I was old enough and worldly enough to know better than to do too many silly things
• As my Twitter profile says ‘Stupid enough to do it again’ anyway.

My Aunt Kathy is coming to visit us for the weekend in our new home for the first time, we are having dinner at L’Ortolan for the 2^nd time in a month and I’m very much looking forward to it all.

Month 9 MRI EXCELLENT NEWS on initial findings

25^th February 2016

 

I seem to be talking a lot this week, but it’s been a busy one with the Physiotherapy sessions and the month 9 MRI scan. I had my 2^nd session with the Physio on Tuesday evening; it was a roaring success in relation to the tennis elbow injury to my left arm. I now have harder exercises to do as many times as I can each day and instructions that I have to keep doing them until it hurt, not just stop at 10 reps and call it done.

The shoulder was also on the same miraculous improvement level until I fell down the stairs that morning, I’ve clearly wrenched something that hasn’t dislodged the impinged nerve it squished it a bit more. Two days on and it’s starting to improve again but yesterday morning was agonising.

Fortunately I needed to be at the MRI unit by 8:15am so whilst it made it difficult to sleep it also meant that I had no problem getting out of bed early enough to be at the hospital in plenty of time for my MRI. My Dad always told me to ‘Play the glad game’ I’m glad that even though it hurt it did get me out of bed.

The MRI was gloriously uneventful the cannula went in first time, 4 scans in the machine were just over an hour in duration and the lovely Radiologist found me the ‘Rocking All Over The World’ CD to listen to while I was in there.

I sent an email this morning to the lovely Dr C asking was there anything exciting on the MRI

To  the lovely Dr C and  the lovely Margaret my MS nurse: Hi Ladies just to let you know the MRI was done yesterday morning. If there’s anything exciting, like no new lesions, no activity brain and neck are suddenly ‘normal’ please let me know so I can sing and dance and tell the world J I guess if there’s something sinister I should know too but I’m hoping there’s nothing like that J

 

I got a reply back really quickly from Dr C

Reply from the lovely Dr C: Not yet reported Had a look - no change as far as I can tell (perhaps a bit less conspicuous) No new lesions

 

It’s not a full formal review, but quite honestly I’m thrilled to bits with the result. This is everything I had hoped for when I chose to have this treatment. It exceeds my minimum baseline of what I wanted from Lemtrada, that metaphorical ‘Line In the Sand’ that MS was not allowed to cross. Right now I have it on the run and I’m driving it back into the sea.

• NO progression
• no new lesions
• Existing damage less conspicuous!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am winning this war!

What's that falling down the stairs ? That'll be me then

This morning I fell down the stairs - nothing to do with MS, just slippery socks, carrying a box and not paying attention to what I was doing properly. I'm not entirely sure my left arm was supposed to be bent that far back at that angle - BLOODY OUCH


Made it to work - still awesome and waiting to see if we are the 'Big Business in Berkshire' that David Cameron is visiting today I will put money on now if it's us, it's not going to be the Bracknell office he will be visiting.

Week 40 - Month 9 blood results available

It would appear all those lovely little lymphocytes that were breeding like rabbits have now committed a mass suicide having resolved my infection, sadly this month they have slumped back down to 0.79 (contrary little bastards) Everything else that was elevated fighting the infection is now back down to normal levels again and I feel great regardless so I’m not going to stress over it.

	Lower Level	Upper Level	Pre-Lem BASELINE	December	January	FEB CD Cell Breakout	February
Blood
Haemoglobin	120	160	144	130	138	136	142
WBC Count	4.0	11.0	11.9	9.8	11.6	11.9	8.8
Plt count	150	500	289	263	336	279	292
Rbc count	3.8	5.8	4.67	4.32	4.32	4.45	4.46
Haematocrit	0.36	0.47	0.445	0.417	0.42	0.42	0.434
MCV	76	103	95.3	96.5	97.4	94.4	97.3
MCH	27	32	30.7	30.1	32	30.7	31.9
MCHC	300	360	323	312	329	325	327
RDW	11	16	13	12.5	12.8	13.1	12.7
Hypochromic  RBC %	0	2.5	0	3	6	0	0.5
Neutrophils	1.8	8	8.09	7.94	9.4	9.76	6.95
Lymphocytes	1.3	4	2.5	0.88	0.93	0.95	0.79
Monocytes	0.2	0.8	0.83	0.59	0.7	0.71	0.62
Eosinophils	0	0.8	0.24	0.2	0.23	0.36	0.26
Basophils	0	0.3	0.12	0	0	0	0
Liver Function
Bilirubin	0	21	9	5	3		8
ALT	0	60	21	14	16		17
Alkaline Phosphatase	30	130	51	49	50		44
Albumin	35	50	45	40	43		42
Thyroid Function
TSH	0.35	4.5		3.4	1.88		2.5
Urea and Electrolytes
Sodium	133	146	139	147	143		140
Potassium	3.5	5.3	4.7	4.3	4.4		4.6
Urea	2.5	7.8	3.8	3.2	4.4		5.2
Creatine	44	97	62	63	70		75
eGFR per 1.73sq m	60	99999	>90	>90	>90		>90

 

Updates from the world of me this week don’t include last week’s ‘getting my bitch on’ thing, in fact things in my world this week have been pretty great.

On Friday I decided that it was probably wise to speak to a physio and test my ‘would stretching me’ theory out and see what happened. I saw a lovely lady at Berkshire Physiotherapy Centre who within a few minutes of checking me out had diagnosed the two problems I have with my arms / shoulder. I have an ‘impinged nerve’ in my right shoulder, and my left forearm is ‘Tennis Elbow’ or as it was pointed out to me ‘RSI – Repetitive Strain Injury’ otherwise known in less polite circles as ‘wanker’s cramp’. Basically it’s all my own damn fault, my posture is appalling particularly when I sit and read books. I tend to sit on a low chair, lean forwards balancing my elbows on my knees (hence the trapped nerve in my right shoulder) and I hold my iPad in my left hand (so I can use my right hand to pick up my wine glass). I’m now sporting some rather attractive blue tape on both offending body parts, have a list of exercises that I have to do as many times a day as I can, and instructions to sit up / stand up straight and stop slouching!!!!!!

I’ve been very vigilant about doing the exercises and just 3 days later I’m already seeing an improvement! My mobility of both offending body parts is significantly improved, the pain levels drastically reduced. I have another session tomorrow night where I’m hoping to get a gold star for effort, and hopefully the blue tape changed as it’s peeling off a bit in places now – I’m also hoping it can be replaced with something more exciting, like whatever they put on kids hopefully – I’m holding out for Minions or Mr Men on replacement tape.

On route to the physio my car had a major health set back – the warnings started flashing and pinging to say ‘Vehicle Pollution System Failure’ even to me as a person who hates to get my hands dirty that one was obvious – the exhaust was FUBAR. I limped it home and waited for business hours to get it booked on for a repair. Our closest Kwik Fit were absolutely amazing, it was just a loose seal on the pipe bits which they did for no charge (they noticed I needed a new tyre – which I had planned on mentioning any way so what could have been a HUGE bill was only £90 in the end for a new tyre and wheel balance + a mended exhaust YAY (probably helped that I was offering to buy them coffee and cake from Starbucks because they were being so great)

The weekend was quiet and restful once the car panic was resolved, actually it was a full on lazy weekend, we deserved one of those. We finally got round to hanging my Mum’s paintings on the walls in the lounge. They haven’t been hung up since September 2013 when we took them down from Mum’s old house and shipped them to the Sunrise Care Home in Solihull when Mum moved in 4 weeks before she died. After Mum was gone the paintings went to my brother, Ian never got round to hanging them up and then Ian was gone too and they came to me. If I’m honest I’ve probably been procrastinating a little about putting them up. They look beautiful and we designed the room around them being up in there, but it breaks my heart right now to look at them and know what I’ve lost that brought them to me.

This week is going to be full on with Work, Physio again Tuesday evening a MONSTER MRI Wednesday morning on my brain and spine. I’m looking forward to the weekend again already and it’s barely the end of Monday.