Part 1 of Round 1 Ocrevus done, pink hair and life is good

Last Friday was the first part of Round 1 of Ocrevus - they break the first infusion into 2 parts 2 weeks apart just to see how it goes. 

It was all rather uneventful apart from my natural reaction to the sight of a blood pressure machine which immediately puts my pressure through the roof ..... it took a while for them to get a natural reading from me .... this involved putting the cuff on me letting me nod off then sneaking up and pressing the button which returned normal LOL ..... after they got one normal all the others were fine, it's just watching them roll it over - it's like it's judging me - daring me - laughing it's head off at me .......

A very long day all told, I was up at 5am to drive into London and even arriving at 07:20am I got the last available disabled bay out the front. Nice big well distanced room, reclining chairs which in reclined mode were quite comfortable (not so much so in upright)

My pee test failed (Wednesday's Urology appointment will be asked about that) so they had to do some bloods too which took a while hence it becoming a very long day. I was honestly more worried they might tell me I was pregnant with that pee test - being pregnant at 48 would be very EEK - I'd be retired and a child would still be at school and that's without all the being a VERY elderly Prima thing.

Like Lem it's steroids, anti histamine then infusion followed by a flush, some paracetamol for the inevitable infusion headache because our bodies really don't like having extra stuff dripped into it.

I finally got away about 4pm and drove home, I was quite grateful I'd had the foresight to make sure there was extra coffee waiting for me in the car - cold black coffee isn't offensive thankfully.

I'd slept quite fitfully all week in the lead up to it so by the time I was home and settled I was ready to just settle in for a sofa snooze. It took me until Monday evening to catch up on all that missed sleep but I'm now feeling great.

I've been quite vocal over the years about how much I dislike steroids, all the horrible side effects they have are deeply unpleasant. That said, they do give you a boost, my energy levels (even being so tired) are higher than they've been for a long time, with it my balance feels better and I feel good. It's temporary, I know that, it's just a little boost from them, and I'll probably be picking loads of extra hair out of my brush and bursting into tears randomly temporarily too - why can't they just be nice instead of giving with one hand and taking away with the other.

I spent time on Sunday with two ladies who also have bugger all immunity .... yes I know that's against the rules, but even with Ocrevus running around my system depleting me of B cells - I still have more immune function than they do - when you see what full on chemo does to someone then Lemtrada or Ocrevus in comparison is no more serious than taking an aspirin. We made a decision that with our friend being terminally ill this is where our bubble needs to be - so sorry to family and friends, but this is where I need to be right now.

I'm back for Ocrevus Part II on Monday 14th and hopefully it will be smoother now we've got the first one over and done with - perhaps an eye mask so I can't see the wretched blood pressure machine rolling towards me.

December is here, Christmas round the corner, a few more gifts to sort out and of course delivery of them to those we love.

Oh and just for fun ..... I have pink hair again - LOTS and LOTS of pink hair since it's now so much longer thanks to lockdown so here you go latest scary picture xx

All is well, hope you're taking care of yourself, much love

T

xx

Back on the Oxygen therapy after 8 months off & 10 days to Ocrevus

 EEK 

10 days .... that's scary to actually say it out loud

It was so far away and now it's just round the corner.

I've been very guilty of being rubbish at maintaining this of late and of hoping I would be less rubbish and failing at that too. I feel like I've made meaningless promises to people who take the time to read this and for that I'm terribly sorry.

Today I've been up to Berkshire MS Therapy Centre and had an oxygen therapy session - not pressurised, just plumbed in and breathing at normal atmosphere but oh boy has it helped.

 My head feels clearer, like the cobwebs have been blown out of my head, it's almost impossible to detect until it's not there, like fog the descended so slowly you don't even realise. I'm also absolutely knackered, how can an hour of breathing oxygen be such hard work when it's the same function we do all day everyday? Perhaps it's because you have to 'pull' a little harder wearing the mask with the valves but I feel like I've done a workout and now I want to snooze.

The broken bones in my right hand saga continues the 'fine motor function' is still painful and awkward - things like holing a cup or a pen, trying to undo the lid on a bottle of pop. I can lift Bob in and out of the car now though so I'm no longer confined (well apart from lockdown part deux - revenge of the Covids confinement) Hopefully the Oxygen therapy will help with the healing process and speed things up.

10 days 

bloody EEK

It's a week on Friday ... AAGGHH

It's sneaked up really fast.

I'm not worried about the treatment itself, that's the easy part, the getting into and out of London to Charing Cross Hospital for 08:00am is a pain in the arse. It's more that after this long in hibernation I've found that I'm actually quite anxious in situations where there are lots of other people.

I went into work for a morning last week because I had a new starter who needed escorting on site to collect her equipment and the night before I was nervous and anxious about just 'being out' - it was lovely on the day but the night before was a sort of low grade panic about it - almost agoraphobic. Anyway by the time I got home I had a migraine in full swing and it basically wiped out the whole day and the next one too ..... I couldn't keep track of what day it was for the rest of the week - It could have been the panicking, the fluorescent lights in the office or just because I was due one, I guess the 27th will tell because Charring Cross is going to be all that type of lighting and we will see if the anxious kicks in.

Gareth is going to drive me in and then come back for me when I'm done rather than me trying to navigate public transport to get there and back (a wise decision I think) and it's something I won't have to worry about. We need to do a trial run this weekend to make sure we know the route and where to drop me off and pick me up.

My hair is really long again now, and not pink (although there is pink hair dye upstairs I just haven't used it yet) - if I ever speculate on here about cutting it short again please remind me I hated it and to not be an idiot.

There are Covid vaccines on the horizon so maybe just maybe there's a light at the end of this tunnel we've all been travelling down for nearly a year. Too late for the family members of a couple of friends, but hopefully in time for many more.

I'm actually registered as a trial participant for the vaccines, but nobody has asked for me to participate the Modena one announced yesterday had reassuring information that they have used older and vulnerable people on their trials so I think when the time comes that would be my preference if we can get a choice on the matter. I do worry that testing was done on fit healthy people to get the best stats on results yet the first live subjects are going to be all us old and knackered ones.

We've put our Christmas order in at the farm shop for our first ever Christmas 'Home Alone' (with just each other and the furry ones) - I'm hoping out for decent weather on Christmas Day so we can BBQ - Yes I know I live in England not Australia and I'm possibly slightly insane to even consider this - but it's going to be so very different to our much loved 'normal' ones so why not go completely crazy with it.

Anyway that's pretty much all I have right now.

I hope you're well, staying safe and sane.

Much love from me

T

xx

Finally back online properly

 Well I managed to get the filming thing working on the new MAC so here goes a mini movie update.

A bit subdued what with everything that's going on and not going on and as I've just noticed on watching it back my eczema seems to be playing up again on my face as a result so I look a bit dry and crunchy.

Don't break your bones it's not a fun sport

It's now over 7 weeks since my 'wrist/hand incident'

I've used the BUPA insurance and seen an orthopaedic surgeon and had the long awaited MRI and the news was not good.

The X-Rays and CT scan were right none of the bones in my hand or wrist had 'snapped' however 2 of them have for want of a better way to describe it 'shattered inside' like a broken egg yolk inside an unbroken shell.

There isn't anything that can be done for it, just time and resting it - and when I say time he's warned me it could take up to 6 months for this to resolve itself. My response to that in one word is FUCK :o(

The thought of no real independence for that long horrifies me.

In better news I'm working my way towards 1 1/2 stone of weight loss ... 21lb's if you're that way inclined or 9.5kg if you're of the other persuasion. Feeling rather proud of myself for that and it can all only help things get better :o)

Life as usual remains very 'beige' nothing new or exciting just more of the same every day.

It's becoming really obvious with Covid still being so prevalent that come Ocrevus time at the end of November and start of December that Christmas this year is going to be a 'home alone' affair for us. Aunty Kathy isn't comfortable with travelling and a packed houseful at Gareths parents for me with a seriously compromised immune system in a high risk area really isn't feasible. Gareth will pop up there for a few days but I'm going to need to stay home possibly 'shielding'

Kinda sucky all things considered but it does open up the possibility of BBQ'ing on Christmas Day some Rib of Beef, a nice chicken and some ham with the usual sides all done with the BBQ - assuming its not throwing it down of course in which case I'm going to have to dust off the range and use the oven for the first  time in a long while :o)

It's also been a very expensive week for me. My MAC (well Gareth's old MAC that I've claimed for the last 3 years) finally gave up and died at the ripe old age of 10 years old. Since neither Gareth or I have any ability to gauge the size of anything, I ended up buying the enormous expensive one as a replacement - and I'm not complaining about that at all it's so shiny and pretty and mahoosive :-) if it lasts as long as it's predecessor then it's a wise investment even if it was a bit of an ouch at the weekend.

I presume the problem I was having doing new video's for the YouTube thing was a result of it's impending demise so once I've put a brush through my hair and look less like grizzly Adams I'll do another one. My hair is so very long now compared to the short haired biker girl look I had at the start of the lockdown. It's not pink or silver or electric lilac now just boring blond - I might do something about that. I'll have to find a new hairdresser too as my local salon didn't make it through Covid and has closed down - such a sad thing to happen.

I hope you're doing well, not going too mad in these very strange times and taking care of you and yours.

Stay well

Much love

T

xx

Oh dear I'm getting worse not better at this

 Why so quiet ...

Well the broken and dislocated toe healed fine, sadly the broken hand / wrist hasn't 

It's still swollen, in a lot of pain and I have no grip - seriously even holding a full cup of coffee is really painful and likely to result in burns.

I've played the BUPA card with the work policy and this week so far I've seen an orthopaedic surgeon who specialises in hand and wrist injuries. Today I've had an MRI

In the intervening time since the injury, I've had more x-rays and a CT scan - looks like theres soft tissue damage (ligaments and stuff) and possibly theres bones that are shattered 'inside' while the outside remains  in tact ... he described it as an 'unbroken egg but the yolk inside is broken' .... really not liking the sound of that.

Apart from that my life has been even more dull and boring than ever, I've left the house once in the last few weeks to pick up a new painting we'd bought and been to the hospital a couple of times and that's it ... no friends, no family, no shopping, not a damn thing.

The right hand injury has completely knackered my ability to do most things. My left hand hasn't been right for years (pun intended) I have no sensation apart from the buzzing that never stops between the two it's made everything so much more difficult that ever. I can't sit and type for too long, holding a phone / iPad and angling my hands hurts too much 

I can't get Bob in or out of the car so I can't go anywhere without Gareth along with me as 'muscle' so I'm effectively trapped at home unless I'm popping to the local Budgens in the car which is small enough I can toddle around it

Honestly though it's just so debilitating and demoralising to have my world shrink to so very small. My head hasn't even really been in a place to deal with the problem (lets face it under any other circumstances I'd have called in the private healthcare weeks ago) I think isolation is finally starting to get to me and instead of reaching out - posting more, recording my silly video's and talking up a storm on FaceTime I feel like I've retreated further into my shell than tried to escape from it.

Okay this is all rather dark isn't it - I'm sorry

Normal services will now be resumed.

It's being fixed the lovely Charles (the orthopaedic god) will be in touch tomorrow to tell me how this can be fixed and I'll be bench pressing Bob by the end of the month (okay that might be a tad optimistic)

I have my Ocrevus dates now, 27/11 and 11/12 (that's proper date format - day/month) so it's going to be a suppressed immune Christmas for me. With Covid on the rise again it's going to be very difficult to spend time up north - it's currently  high risk area with local lockdowns - need to start making some logistical plans for how to manage that really

In other news I'm trying to deal with being overweight again - in my last few weeks of misery I've lost 15lb's - a stone and a smidge - 6.8kg's (depending on your preference for display purposes)

The fight against the flab is in full swing because lets face it all this shit can only be better if I'm not always carrying the weight of my bloody wheelchair with me in everything I do.

I'll do another video soon I promise (I have a massive spot on my left cheek right now - I mean 48 with a spot ... WTF surely that's supposed to be just teenagers right ? )

I hope you're well, taking care and I'm sorry for disappearing for a while

Hey J-Wildy - thanks for the kick up the arse mate - I needed that xxx 

The broken toe video

It's taken a couple of days to get this done, 4 attempts to record it with my Mac crashing randomly part way through (although you may be relieved to know that the result is that this one is VERY short)
Ohh and I finally got my hair professionally trimmed and sorted so I no longer look quite to much like Grizzly Adams slightly more feral older sister :-)

How many broken bones can you have at once

Apologies for the absence, if you've seen the vLog then you'll know about one of my broken bones, but not the 2nd.
It's been a strange old few weeks, first I managed to break the scaphoid bone in my right wrist in a 'falling down and putting my hand out to stop myself hurting myself' incident which made typing incredibly hard. A week later I managed to catch my little toe on my right foot navigating round the furniture barefoot at home and not only break a bit off the end of it, but dislocate the knuckle in the middle of it too.
All things considered the last few weeks have involved much swearing, crying and general frustration at how bloody hard everything suddenly became having lost my ability to actually do pretty much anything without extreme discomfort and risk of hurting myself again
I ended up at the Royal Berks injury unit and saw the same lovely nurse both times - she has now warned me that this coming Sunday is her last on this rotation and if I'm going to break something else perhaps I should take her chocolate and flowers so it feels more like a real 'date' LOL
I've been up to the Royal Berks today for another wrist X-Ray and this time there were people there at the X-Ray department which was quite strange as the previous visits it's been like waking up 28 days later with me being the only person moving around the hospital. It's all very safe though, very carefully managed and organised so nothing to be afraid of s long as you practice distancing, great hygiene (which we're all very experienced at) and wear a mask.
So hows everything going MS wise ? It's all very much the same if I'm honest, nothing has noticeably got better or worse which is a good thing, lets face it 'beige days' are always a good thing with MS when something else didn't stop working properly.
I've had my blood tests for Ocvrevus. another Neurologist appointment (which might have been in error since it happened on the day when it was supposedly cancelled from) apparently my next contact will be for going in to have the first part of the first treatment (the first Ocvrevus infusion is split into 2 parts 2 weeks apart) - I guess the last few weeks of broken things have very much given me confidence in going in for it so that's a good thing.
Gareth is now going back into work a few days a week, it seems to really make a difference for him, having human contact other than me.
I can go back in to work again if I want to, it's voluntary not mandatory - I have to book a desk in advance to make sure we aren't all coming on at the same time - so if you need to go in and the available and distanced desks are full it will deny you access - I suspect it will be many months before that actually happens. Of course right now I can't even get Bob out of the car let alone back into it so that's not happening for a while yet unless I can plan some 'muscle' to assist. I think when I do it's going to be a welcome change.
I bought myself a recumbent cycle a few weeks back so that I could do some exercise, build some strength hopefully lose some weight and get more fit without actually causing more problems with my middle aged arthritic knees which I really enjoy using - right up to the time I broke my toe - right now the thought of using it terrifies me somewhat but when my toe is better I'll be back on it.
The dogs are still loving that they're never left and we're working on trying to get them used to that again. They're loving that Michelle walks them now rather than just playtime in the garden though.

So I'm popping up another video today to explain the 2nd break on the vLog but here's the last one for you to have a giggle at.

Stay safe and take care
Much Love
T
xx

It's be a long old few weeks

Hair update - I'm no longer pink or silver or a strange combination of pink & silver which came out electric lilac

Just Ash Blonde now albeit significantly longer than when all this Covid Lockdown stuff started and I finally dared to 'come out' in a video.

Can't quite get my head around how 5 months have just disappeared from the year it seems like such a short time overall, but it obviously isn't and has been incredibly hard and has taken such a toll on so many people, lives and families.

Anyway here we go scary movie time (it's just a short one)

Bad Bad Bad Tracy - Neurologist appointment and Wedding Anniversary

First things first

Profuse apologies for 4 weeks of no updates. I'd say I was busy or out or doing something terribly exciting ...... but lets face it, if I said something like that, you'd assume my account had been hacked because my lack of exciting life is simply a fact of my boring life.

So last week was our wedding anniversary - 9 years and we're both still alive, not in prison and haven't recently had a patio re-laid :) (MANY years ago, there was an English TV show called Brookside where the husband ended up buried under the patio - hope this helps if you're not from the UK or even if you are and aren't ancient)

We had a long leisurely lunch at the Hand And Flowers in Marlow (as usual - I know but we love it there) did a couple of errands on the way home without stress because we had a lovely lady here keeping the dogs company. Four continuous days off though did make for only 2 'constructive' days because the other 2 were horrid hangover days.

I had an email last week telling me my neurologist appointment at the end of the month had been brought forward to August 5th at 10:30am .... it optimistically asked me to go to St Mary's in London for the appointment which I sceptically thought 'okay yeah lets see' to upon reading, naturally 2 days ago I got the follow up Text Message saying 'under no circumstances try to attend in person - stay home we'll call you'

This morning at 10:30 on the dot ... ring ring ... lovely lady to make the preliminary arrangements for Ocrevus .... I'm getting an email later so I can book my bloods - I really do have to go to St Mary's for that - then once the results are back next call will be telling me when I go to Charing Cross for infusions.

I'm quite excited that it's actually going to happen - something to address the PIRA I'm experiencing despite Lemtrada working perfectly to stop the active disease the old stuff started bubbling again and needs a slap

The wonderful MS Doc Aaron Boster describes it so much better than I can - I've dropped him a DM on Twitter asking for permission to share his video's but didn't hear back - Dr B if you're reading this -- sorry and hope you don't mind xxx

I'm having a bit of a 'resurgence' right now, the arthritis pain in my knees had got to the point where I didn't know what to do with myself so I've gone up to 4 of those monster turmeric tablets each day, a huge dose of Glucosamine and a separate huge dose of Chondroitin - the inflammation and pain levels are reducing, today I decided not to take a pain killer this morning and so far that's been the right decision

Wake
Kick Arse
Repeat

The dogs are still loving the humans working from home - it will have been 5 months on the 9th of this month since the decision to come home and stay home was made. We're working on building up time away from them now so that 'when' we go back it's easier for them.

So that's me

Apologies for the absences, I'll try not to be so rubbish

Hope you're having good days and better days

Today is definitely a better day xxx

Grey hair - the movie

Here it is what my dad would laugh himself silly at - 25 years of covering up the grey hairs and I've coloured the bloody lot grey 😎

5yrs 1mth 2 wks - Silver hair and aircon

The thing about working from home in lockdown is that my new office location in the extension has lots of windows which the sun streams through each morning, it's glorious and please don't think I'm having a whinge about sunshine and good weather, I'm not at all (despite being British which of course means moaning about weather is a requirement for nationality) I have this tiny little Aircon unit that sits on my desk blowing cold air at me from 8am until 10am when the sun moves over the roofline. It does make me fee slightly more charitably towards the people who did climate control in the offices at work ... I struggle to maintain a nice temperature in the extension, they were trying to do it over 4 floors with 60+ meeting rooms and a massive floor to ceiling atrium - I think they need more credit.

The Olia Rose Gold in my hair that added the pink 'Bagpuss' look had faded out quite a lot so I decided to give Silver a try, now bear in mind it was going over a mixture of blond and pink which funnily enough it's on the samples on the side of the box so it was always going to be a bit of a gamble.

It's actually come out really nicely, it's sort of a blend of silver, metallic lilac, some gold streaks and some darker more grey shades all streaked together - it looks great but there's a little 'deja vu' with it too, that thing where you're watching something on the TV and the 'age up' one of the characters by greying the hair .... It's a little like looking into a mirror thats ages - 'heres what 60 might look like' with a 48 year old face in the middle.

Today it's been 17 years since I lost my Dad, such a long time ago, but today it feels like yesterday. I feel sad, but I'm used to it now, a few tears and getting on with it is the order of the day. He'd look ay my hair and laugh himself silly whilst calling me a 'stupid bloody woman' because he'd find it hilarious that after 25 years of ruthlessly dying over the white hairs that I've voluntarily gone silver all over so my whole head is what he would call it exactly what it is ..... OLD PEOPLE GREY ..... LOL

The pubs and restaurants have reopened over the weekend here in the UK (with Social Distancing in place) it's not something that I've felt the need to participate in - yet - I'm not terribly bothered about the pubs if I'm honest, going out for a meal however is something we've really missed. I've had a table booked at The Hand & Flowers for our wedding anniversary for a number of months so that may well be our first dip back into 'normality'.

I had a dip back into watching Channel 4's GreenWing last night, it's been a long time since I first saw it and I guess I'd forgotten just how very strange and messed up it is - hilarious, but it's honestly like watching someone else very strange 'trip' - or at least what I imagine doing that would feel like. My perspective on some of the main characters has changed greatly from when I first watched it, what was once charming and endearing is now sneaky and opportunistic. I think this might be interesting to watch again in 10 years time to see if my perspective has changed again.

Gareth's on a training course this week (online) I'm doing my 'thang' and we have a dog trainer booked for tomorrow evening (again) all go here this week (not)

Take care of yourself and each other xx
T

5yrs & a month

Does anyone know where the year has gone so far ?

I'm starting to lose track of time I think, my once a week 'trip out' to Costco for 16 litres of diet cola and then a quick whizz round Sainsbury's for the shopping seems to mark the passage of time, those Saturday excursions are really the most exciting thing I do now.

It's Monday today so I've worked from home office again - actually I've not done a video from my new location so I might make time to do one tomorrow, hopefully it will be sunny and lovely but right now it grey and windy and absolutely lashing it down outside so I'll wait.

The dogs are still loving this life where the humans are always around to keep them entertained, Murphy cat is getting braver about coming in the house when the dogs are around but his cowardly streak is still very wide.

I've re-done my pink hair, and where it was only lightened last time and was a bit of a 'dipped' look is now properly pink.

It's Friday again, so tonight is poker night with the lads - I managed a respectable 2nd place again last week (vast improvement on the week before where I think I was first or second out) Football is also back here in the UK and tonight Gareth's beloved Tottenham Hotspur are playing Man United (not sure that's going to have a happy ending but on a bright note he's going to properly distracted playing poker so that can only be a good thing)

This weekend will be the usual lot of nothing terribly exciting I suspect but that's okay, there's a rumour going round that the weather is improving again which will be lovely - it's been quite grim for the last week or so.

I hope you're staying safe and sane.

Much love T xx

More video stuff if you're that way inclined - including my change of venue

5yrs 2wks giant holes and stuff

Apologies for being quiet for a couple of weeks, in these lockdown times, well my life has been even more dull than usual, no nice meals in fancy restaurants, trips the length and breadth of England to visit people, my world has shrunk to our home and my once a week trip to Costco for 16 litres of diet cola.

Things have happened here at home, we had permission from the tenant next door and had a contractor in to bring the hedge in the garden down to an acceptable height and reduce the weight on the other side so it wasn't leaning into their garden.

We've had a big hole filled with water just in front of our driveway from a damaged water pipe for a few weeks now, we had contractors out yesterday to dig down to the pipe, make the repair and fill the hole in.

Michelle is back walking the dogs in the mornings 3 days a week - they absolutely love this, they both get 30 minutes each at the moment individually while they get used to walking with her, the goal in eventually they'll get an hour together once Michelle is confident the little darlings (buggers) will actually behave themselves.

This is how small my world has become, something 'exciting' happened this morning - I 'rescued' Winston from something awful and scary - he'd jumped into the bathtub (don't ask me why this is a fun game) except it had just been used - it was wet and he was trapped in there. Okay I'm sad but here are the pictures just because in his extreme distress at being trapped he also looks dead cute.

It looks like our cleaner can also return in a couple of weeks time - now THIS will make a difference in our lives, not bitching at each other about who should be doing what and when and because V is here we can actually leave the house - TOGETHER - Something we haven't done since March 8th. I have no idea what we will do, where we would go, but to be fair sitting together in the car in the queue at the Costa Drive-Thru would be 'exciting' after this long.

I've had swollen ankles (we think from the heat) I've been in to the doctors for a quick blood test to check thyroid TSH levels and kidney function just incase - my TSH is 1.2 for May - YAY I hear you say - but no - apparently at the ripe old age of 48 and in the menopause 1.2 is 'a bit high' for someone my age just under 1 would be more what I need to be aiming for - who knew it came it an 'age scale' on top of the normal ranges? Not me this is new. I presume that means 'tinkering' with my Levothroxine levels again to try and bring it down a little.

So anyway life goes on, I hope you're making the best you can of this very strange time. Take care xx

5 years ago yesterday this all 'began'

• The sun is shining
• There's a gentle breeze blowing in through the open window
• Winston and Bella have both had long walks this morning with Michelle (it's great to have her coming round again, the dogs adore her and it gets them to long lead walks they both need)
• Gareth is working downstairs in his office
• Life is good

There will be fresh home baked cheese scones (that's biscuits to those of you over the pond) for lunch (Yes BreadGod has upgraded to making scones too - I'm hoping his next batch will be plain ones so we can do the whole Afternoon Tea thing with a pot of tea some sandwiches and scones with clotted cream and Raspberry Jam)

Life is good despite C19 and lockdown

Five years ago yesterday I was hooked up to the IV's and my Lemtrada journey started.

I wasn't scared, I was excited, it was empowering to be taking back control of my immune system from the MonSter, to stop being it's victim and kick it's arse.

5 years later I'm still excited, I still want to kick it's arse, Lemtrada did everything it promised to do and more. Most of the improvements I experienced are still holding strong. The weak legs and the numb arm came back but that's old stuff 'grumbling' and Mr N and I have a plan to put the brakes on that with Ocrevus later this year (C19 Permitting)

I was going to try and do a video today for the vLog thingy but we have 2 nice men in the garden with chainsaws and hedge cutters chopping the hedges down to a manageable height  (not the usual short back and sides and a flat-top - we're talking a good 3 feet height reduction overall) they're making fantastic progress, but I struggle to talk loud enough for the sound to be good under normal circumstances without the rattle of chainsaws in the background.

We've discovered we missed a couple of series of BlindSpot the TV show so the evenings have been partially used binge watching 3 or 4 episodes an evening for the last few days, we will probably catch up to 'real time' somewhere late next week I think then have to watch like 'muggles' going forwards. The joys of changing the sky box and losing all our series links so we can binge watch the stuff we forgot to re-add as we rediscover it.

Lunch today will be authentic Spanish Croquetta's with some aioli to dip them in - sangria in the sunshine on a work day sadly isn't acceptable at lunch so I'll just imagine that part.

I guess that's as much news as I have really, we're just doing our thing, staying home, staying safe and  taking care of ourselves and each other.

I hope you're okay, that life although strange is being kind to you. I'm here if you need to talk to a slightly nuts middle aged bird.

Take care, stay safe, keep fighting, contact free social distancing germ free virtual hugs and all that.
xxx

Ohh ... the one video I did make yesterday ... Winston and Bella doing the 'Leave It' challenge

4+11+2 - Quarantine continues and online shopping addiction

Has anyone else had a 'slight problem' with a rampaging online shopping addiction?

I saw an internet picture saying that the checkout button was not a replacement for mental wellness and had a good giggle about it, but looking back over the last 2 months, it's me - go on laugh, you're allowed, I'm laughing too even if my bank balance is weeping a little.

Don't get me wrong, the things I've ordered have all been beneficial to my mental well being, Wagyu beef, Iberico secreto, 10kg of Bread Flour for Gareth (who I now refer to as 'Bread God'), Portuguese Armaguinia, French Creme De Pamplemouse Rose, and a much more obvious pink hair dye. Lots of lovely things to BBQ and what at 48 is probably considered a mid life crisis hair change

My 'acquired brother' Steph said my hair looks like Bagpuss now ---- for those unfamiliar with the old British children TV show this is what Bagpuss looks like ....

For obvious reasons, once lockdown and social distancing rules permit I will be hunting my much loved acquired brother down to give him the slap he so clearly deserves. :-) Love you little brother but you know there's a law which says big sisters have to mete out punishments

Bread God has been cooking up a storm (hence the massive bag of flour) and I'm sure that, the good food and not being able to just get out and about is probably taking it's toll on my already considerably sized bottom and thighs but like the true coward I am - the scales are being ruthlessly ignored.

Tomorrow is the delayed May Bank Holiday here in the UK (Delayed from Monday to double up with VE Day - bizarre decision when we could have just had an extra one for VE Day) so today is 'Fake Friday' I'm looking forward to a lovely long weekend in the sunshine with Bread God and the dogs.

Stay Home, Stay Safe, Stay Well and here is this weeks Video Blog if you're that way inclined

4+11+1

Oh my - I've shown myself to be spectacularly crap at publishing updates whilst locked up at home without things to do outside. I don't even have a defence, I did start a post and forgot to publish it (and I've just read it back and it was rubbish anyway so maybe you all got a break)

There's not really any defence though is there, because you only have to read below to realise that at any time I could have got off my lazy arse, wandered up to my office and popped a few words down ....

So we're now half way through week 8 of operation 'Stay Home, Stay Safe'

We have 2 good friends who've had Covid and recovered, we know a few more who've lost family members to it through our extended family of football fans who are members of the forum we own.

I did finally get a telephone appointment call from the Neurology team at Charring Cross, Ocrevus is still in the works but it's going to be a while, I have a face to face appointment scheduled now for June 30th at St Mary's (9am again but at least I can get to St Mary's) for next steps. To be fair I'm less concerned about Ocrevus now given that it keeps T cells suppressed and all the information that seems to be emerging about the severity of the pneumonia that is taking so many who contract it is a direct result of hyperactive T-Cells .... so having less of the wee bastids in the first place could really only be a bonus in that situation.

What else have we been up to well we ordered Indian food for delivery on Friday, we have had 4 BBQ's in a week, the dogs loved the 'weeks holiday' at home where they got to go to K9 for 11 days in a row. We're not plotting to bash each other over the head and bury each other under the patio. The sun shone beautifully during our holiday then buggered off on Monday for back to work making us feel a little less sad about the working thing.

Ohhh and I came 2nd last week in the Friday night Poker Tournament that we have with some of the other members of our football forum which is a distinct improvement on the 2 weeks before it when I came last and last but one - actually won $10.40 this week which put me back up to my starting balance (we're not exactly big spenders with a $3.50 buy in)

Amazon prime have just delivered a small number of surgical face masks to us and we had gloves arrive a couple of weeks back - with the very small number of trips we make outside they should probably last us a number of months at least. Once the peak of this is done and we try to return to normality I think wearing both of these things will be a normal part of daily life for a long time going forward.

Having these things like the home made AntiBac gel isn't part of some master plan to get out and do stuff, it's about being prepared should we need to.

I've been surprised to discover that actually being unable to just go out and have some time alone has been the hard part of this for me. I've always needed that 'on my own time' even when we've had friends or family time, I need to get away and let my brain decompress. Except now I have nowhere to go or more to the point it's not essential travel and I shouldn't be.

I've just been out for my monthly trip to the chemist to pick up my thyroid meds. Quick buzz up the road in Bob (which can't get into the chemist because of the door frame being too high) everything brought out to me, checked NHS exemption card from a distance no mask or gloves required, quick wash up and antibac when I got home just in case and now back to work (glamorous lunchtime for me)

All things considered life is good, I need to socially distance myself from Cadbury's buttons and the fridge I think and possibly from the drinks cabinet as I had a couple of hangovers last week while I was 'on holiday' and didn't like them one bit, they certainly were not offset by an awesome night out and great memories, just by reading and relaxing.

I hope everyone is staying home, staying safe and taking care of themselves and each other.

Here's this weeks Video update to go with the Blog

Much love

4+10+2 A week in lockdown and my trip 'OUTSIDE'

Yes you read that right I left the house - alone - twice

The first trip was an emergency trip to the opticians after my reading glasses exploded (damn things have been taking lessons from the toilet in the ensuite) a long queue outside our local Asda (the opticians is in the same building but not an Asda one) with appropriate social distancing and a hilarious lady in her 70's who when asked was she struggling with queuing with her walking stick burst out laughing and told me she was clearly more up to it than me since I was in a wheelchair .... some shocked inhales from those around us before they realised I was laughing my ass off and giving a social distance high five to the lady and conceding that she won.

The second trip was around Sainsbury's yesterday in Bob with a trolly and much distancing and hygiene practiced. I was complimented on my 'double wide vehicle' driving skills picked up only necessary quantities of essential items (yes in this house a bottle of Black Cow Vodka is an essential item)

My neurologist appointment hasn't happened, more about that in the latest VLOG (or is it Vlog ... vLog ??? I don't know - the video thingy) - I've tried to be a little less quiet on this one (let me know if it's better please)

It's also become very clear to me watching it back there are some things I need to address or acknowledge

• My eyes really are VERY wonky aren't they 48 years and I finally realise just how wonky they are and no amount of makeup (even if I knew HOW to use it will help with this)
• In this light I seem to have a faint 'moustache' ...... this I can deal with even in lockdown .... I have a cream for that and one of those vicious rotating hair grabbing machines
• Oh but I'm fat ..... there's now an under the desk cycle contraption being delivered by Argos on Tuesday - might as well make working from home work for me
• Yes that poor bear with his head hanging open has been like that for over a week and I need to fix his face

Ohhh and the sun has come out so I'm going to pop downstairs and hang the washing out on the line 

VLOG thingy is here : 

Stay in

Stay healthy 

Protect the lives of yourself and others

To those out keeping our countries around the world functioning, in shops selling food, deliveries, medicine, policing, transportation, farming and the many other essential services ... THANK YOU, BLESS YOU and YOU ARE HERO'S

I finally did it - Video published on You(look awful) Tube

• So it's early morning
• I'm only on my second cup of coffee
• I've been up and Working From Home Office since 07:30am
• I have what can only be described as 'Iso-hair' - I look like I've been dragged through a hedge backwards - twice
• I have no makeup on so my complexion looks like pizza
• I haven't turned the light on in the office because:
• I'm northern and we don't spend money necessarily
• it helps tone down 'pizza face'
• I didn't give this any thought other than 'fuckit lets just get on with it now'

So yes I'm middle aged, fat, I have wonky eyes and a today the complexion of pizza and shit hair.

Actually my timing is absolutely dreadful, I mean really what was I thinking - well it's done now.

Enjoy - even if it's only that you pity me or take one look and think 'yay well my life doesn't suck so much'

Virtual love and hugs all round

4+10 Blood Results and living the Iso Life

So here we go 4 years and 10 months blood results. I have to say at this time it's really bloody reassuring to get my lymphocyte counts and find out that the little darlings aren't breeding like crazy to try and fight off 'the beast'

I've effectively quarantined myself voluntarily. I have left the house to go to K9 with Gareth and the dogs, but I take a folding chair and touch nothing, we're there alone and it's perfect for us. I've driven to the shops with Gareth in the car and let him go in for supplies needed on the day (no panic shopping) and the only trip 'around a store' was a quick nip round Costco last Saturday to pick up a nice big monitor to plug my laptop into so I'm not hunched over squinting at the teeny tiny laptop screen. With Social Distancing outside only 100 people allowed in at once and Bob as a 'protective device' it was actually the most pleasant trip round the store we've ever had on a Saturday and me using a doggy 'poop bag' on my hand to enter my pin into the chip and pin machine had people laughing.

The little bedroom at home is now cleaned out properly and it's my home office now so I can actually walk away from work and close the door on it rather than using the lounge and just moving further down the sofa at the end of the day.

As everyone else seems to be doing, all this extra time at home means I also have some time to do some 'house jobs' - you know all those things you look at and think 'must get on with that when I have time' - well now I do. I'm a dab hand with plaster so I've filled in some of the bits that Bella(end) has chewed over the last couple of years so we can paint them over.

Working from home full time is 'different' for want of a better way of describing it. Fortunately I have gareth and the furballs to keep me company, I think everyone at work has been introduced to them all over the last couple of weeks at one time or another.

My hours working from home seem to have gone a bit tits up .... I'm falling asleep in the evening at 8pm and waking up at 5am ..... not impressed with that. I'm starting tot hink it has a lot to do with my office being upstairs and I'm up and down the stairs about 20 tmes a day now which in terms of excercise I think is a bit of a shock to the system. I'm not going to swap offices with Gareth though I'll keep doing this because the alternative is that wierd Joe bloke on the internet doing 'morning PE' and theres just something about him that makes me want to put my foot through the screen (which would just make me fall over trying)

Anyway here we go bloods for the month. Naughty Thyroid is playing nicely again, usual wibble on the monocytes but it's now on;y 0.01 over max so it's getting better, Neutrophils are way back in the normal range too.

So it's all good here, virtual love and hugs to you, stay in, stay safe, be happy

Love
T

4+10 and a bit - isolating and exploding toilets

The 12 weeks was announced by government on Monday with MS listed as one of the conditions that should go into hibernation. 

Strangely I’m seeing a lot of questions from people who heard the announcements, read the information on the government notifications and are still making comments like ‘I’ve called my MS nurse to check but he/she hasn’t called me back yet’ or even better ‘I’m waiting for a letter to confirm’ - perhaps my tolerance is a little low right now but I do wonder why they think the NHS has time to print and post a bunch of letters when every nurse I know is working flat out trying to help take care of people in the hospitals?

Bloods on Friday went as planned, there was a lady demanding to see her doctor face to face because she needed her medicine adjusting and she didn’t want it done as a telephone consultation - she had herself so wound up she was on the brink of a panic attack and couldn’t breathe 

Anyway I will call on Monday to see if there’s any results but I guess they’re not priority right now and rightly so -  it might be a while or not at all - they’re not making appointments for more so it looks like the last 2 months of my 5 years of testing might not happen - a shame because my 5 year results tracking spreadsheet will never be completely filled. 

Anyway yesterday morning was a catastrophe - at 8am I went to the bathroom sat down on the loo and the water inlet pipe snapped - a fountain of water shooting across the bathroom. Gareth ran down and turned the water off at the mains shut off and we had to have an emergency plumber out. The dogs and I social distanced ourselves in the back garden while he isolated to toilet properly - he’s got to come back on Monday to repair it properly and overall a bill of nearly £300 😢😢

We knew the toilet was moving a little - replacing it was part of the work we were getting done which sadly won’t be happening for a long time now. 

I now have a lovely new big monitor in my newly cleared out home office so I have a proper working space for the next few months (its been my office for years I just haven’t used it so it became the room where technology goes to die - 2 X-Boxes, 5 keyboards, 6 mouses. 2 gamer headphones and numerous unidentifiable bits of computer innards were sent to the dump) - sadly our cleaner won’t see the fruits of my labour for a long time, she’s a health care worker so she’s saying she won’t come near me for my safety. 

I’m hoping the recovered verses died numbers will start to improve over the next couple of weeks. It seems it can take 10-21 days to recover and test negative which is obviously a far longer timeframe than it is for a vulnerable person to die when covid develops into pneumonia. 

A lot of our restaurants have converted completely to takeaway and delivery businesses now so they can continue in some form. We have a wholesale greengrocer a couple of miles away which usually supplies all the local schools, business catering, restaurants and hotels - they’re now doing veg boxes - delivery for those that can’t go out for a small fee and collection for those who can. Gareth collects ours tomorrow. 

All good here (exploding toilets aside)

The sun is shining in March in England rather than it pissing it down - fickle weather choosing the one year when we can’t go out to be nice 

Stay home, stay safe and stay in touch xx

12 weeks lockdown - ooooof thanks Covid-19

Over the last 5 years I think we've established pretty well that I'm a socially backwards person, it’s not that I don’t play well with others, it’s more that I don’t know how to play with them. There are sectors of society I can interact comfortably with and others that I don’t so much as actively avoid the world because that would imply I thought about it and chose not to …. It seriously doesn’t even occur  to me

Today is day 3 with 81 days to go …. ¼ of a year and oh my but I just want to go get a Costa drive thru pick up a cup of the hard stuff and then perhaps wander around Wellington Farm Shop and spend way too much on random stuff. Even the MS Therapy Centre is not open for the next month for my weekend Oxygen Therapy.

My only trip outside this week will be for my monthly bloods are at 8:35am tomorrow – I have to leave the house and go to the surgery for that (a doctors surgery is what you guys call a clinic – not surgery as in chopping into people) All our Doctors’ appointments are telephone only now but the nurse appointments for bloods are still in person – I’m the first appointment of the day and there’s going to be worst case 1 other person there as there are 2 nurses so pretty safe since I intend to touch nothing and not go near anybody at all.

I do have a safe place to ‘go out’ with the dogs, we’ve used a secure dog walking park for the last few years and because it’s private hire there’s nobody else there. There are disposable gloves to use letting yourself in and out so we don’t have to touch the locks, Gareth still isn’t overly happy at the prospect of me going so I haven’t been yet to reduce his concern.

Gareth was a soldier, he did tours in Iraq and Afghan he had rockets fired at him, was threatened with guns, and in his words ‘this scares him more because it’s the people he loves who are at the most risk'. He’s being so great about it but with his worries about his Dad (he is SPMS and VERY prone to picking up bugs) and his mum is a smoker and often recovering from a cold or coming down with one because she’s picked them up from his dad and his grandmother who’s elderly and frail.

The last thing I want to do is give him more anxieties about me.

The supermarket shelves are blitzed of everything and anything its like the post Zombie Apocalyptic scenes from 28 Days Later. My nod to ‘stockpiling’ was that on my last Ocado home delivery I ordered 2 chorizo’s, some milk powder and 2 lots of bread flour (Gareth is great at making bread – which is just as well because there’s none in the shops) we have plenty of stuff to keep us going, there’s no real need for anything other than the odd bottle of wine.

This is going to be life changing for everyone, nothing will be the same going forwards. Homes, families, finances, business is all going to be changed, the potential mental health repercussions of distancing, isolation and bereavement will reach far into the future. I’m hoping that as a species us humans can deal with this in a more dignified and caring manner going forwards than some have so far.

Blimey I’m dark today …. Time to stop that and lighten up, the good thing about working from home is that my ‘background noise’ of choice today is back to back to back episodes of Pitbulls and Parolee’s – lovely fluffies and happy endings – how can that be wrong.

Oh and since we all have so much time on our hands now we’re working from home, not commuting a very lovely lady in Texas called Amy has started a blog – a new Lemmie in a Covid-19 world, new fears, new challenges as well as the same old crap that we MS’ers we all put up with on this journey. Take a moment to have a read, perhaps say hi so she knows you’re not a robot that would be lovely – the more people who ‘Pay it Forward’ with their experiences the better. https://amyhsroad.blogspot.com

So anyway I’ll leave you with one last thought as Korona-geddon continues ….. as usual as per my slightly sick and twisted sense of humour  ….. well please take this in the spirit it’s meant and hopefully it will make you smile xxx

Irelands response to Social Separation

Doing Cannibalism the right way

 

 

4+10 - work, work and more work and Covid-19 and the menopause LOL

Sorry I’ve been quiet, it’s been frantic with work for the last couple of weeks, just one of those times when everything happens all at once and you spend your time bombing around like a scalded cat.

 So the whole world is now fighting Covid-19, the elderly, the physically frail and those with pre-existing medical problems particularly those which have treatments that have an impact upon immune function are in the high risk categories.

The natural response this this situation for those of us with MS who’ve had this treatment is as expected FUUCK

Then i thought about the last 5 years, the gallons of antibac, using scarfs so I don’t actually touch stuff, that as I’ve waxed lyrical in here, my life is quite dull, I’m a crap friend who doesn’t socialise anywhere near as much as I should (the less kind would say I’m an antisocial cow)

The rules are to practice excellent hygiene, wash hands regularly, don’t touch things, don’t get to close to other people, don’t touch people ......

I’ve been training for this Covid-19 shit for 5 years - I’m Jedi Master level at this game it’s the most natural thing in the world for me to live like this.

The rest of the world is now faced with having to live like we’ve had to and it’s gone completely and utterly mad.

Clearing the shelves in supermarkets stocking up on Zombie Apocalyptic quantities of pasta, rice, lentils, beans and toilet roll is bloody insane it’s like half the country have had a collective mental break. What happened to ‘in a world where you can be anything Be Kind’

When you’re facing an elderly person on a budget who lives week to week on a budget and CAN’T stock pile looking heartbroken and confused because they only needed 1 roll of toilet roll for the week and the shelves are empty and they can’t just jump in the car and pop to somewhere else to get what they need because selfish thoughtless bastards have blitzed the place of everything like a plague of locusts  - it makes me angry.

I’m not expecting my meeting about Ocrevus to happen on April 1st, even if it does I would err on the side of caution and hold off on it for the foreseeable future. I’m fine with that, I’m NEDA and if unlikely as it is I relapsed well it’s certainly better than compromising myself.

I’m concerned for the elderly in our area and community for my Aunt and Gareths family. So I’m going to do what I can to help in a safe way, ride this out and reassess later down the line.

Oh and hilariously ..... I saw the doc on Monday ....
 I’m officially in the menopause and on HRT - sadly the tablet type not the happy patch on your arse that makes you feel like a teenager again.
YAY I’m an old fart 😂😂😂

Stay well, stay vigilant, stay healthy and stay calm
You’ve got this
xxxx

4+9+2 - Dull, miserable and birthdays

We got the quote back from the tiler and it’s not too scary, we’ve been and looked at some lovely tiles so we have a good idea of how many vital organs we’re going to need to sell off in order to get the en-suite done – new bathrooms seem to be eye wateringly expensive.
The dogs have new dog beds, and last night for the first time in 2 years Gareth and I actually had the bed to ourselves *faints*, Bella seems to be coming back to herself after the loss of Amber and but she and Winston seem to be a little more balanced.

Yet another storm over the weekend Jorge …. Maybe it’s because it’s my birthday tomorrow but I’m nostalgically looking back thinking ‘remember the days when we just had bad weather’ …. It didn’t have names (well not ones you’d use in polite conversation) it was just how this time of year was each and every year and we just got on with it. K9 was closed on Saturday (in case Jorge blew down trees) and then the sun shone for most of the day with the occasional torrential downpour, some sleet, hailstones and yes some snow too ….. all in the space of an hour.

So yes it’s my birthday tomorrow and for some reason, this year it’s making me incredibly low and sad. Perhaps it’s because 5 years ago it was the last time I spoke to my brother on my birthday, or 7 years ago, my mum, 17 years ago my dad. I’m being silly, but this year it just feels even more lonely than ever. The postman won’t bring a bunch of cards, there won’t be phone calls, no Mum’s madcap surprise visits where I’d get a phone call saying ‘guess where I am’ and she’d be in the pub near my home or outside work at lunch time.

It’s just a day like no different to any other and tomorrow I’m going to spend the day home alone with the dogs.

Good grief I’m a miserable bitch this week.

We’re going out for Argentine Steak tomorrow evening YUM

So what else has been going on?

Not much really, chilling, being boring and middle aged

– my hair is finally growing back after I had it all so brutally cut short last year

Boring right?

I think I’ll just stop here and hope that I’m not such a dull whiny little bitch next week.
xxx

I have the best Neurologist

Emailed blood results to Mr N yesterday - got an email back saying Ocrevus has been approved :)
Next appointment is St Mary's on April Fool's day - presumably to sign the paperwork and book preliminary checks.
What are your thoughts on a bit of a rebrand to .....

Kicking MS in the Nut's

Lemtrada, Ocrevus and beyond

Tracy's story

 

 

Bit of a mouthful isn't it ..... all suggestions welcome

 

xxx



4+9+1 Blood Results

Short and sweet here's this months scores on the doors

Naughty thyroid still needs spanking

4+9+1 (Years, months weeks) progress at last (not MS progression)

Happy Monday (note I’m aware sometimes this may take a few days before I finally get round to publishing so I’m adding the frame of reference early J - a bit defeatist I know, but let’s face it is more the norm than the exception)

We still have 2 dogs, Albert was an awesome and sweet boy and absolutely massive (the MS in me loved I could stroke him without even trying to bend down LOL) however he’s a hound, they have a particular way of playing and it’s quite boisterous and whilst Winston has no idea that he’s short and was clearly leader of the pack, Bella was very intimidated by him when he went into play mode and it could be damaging to her confidence hoping she would get used to it. He will make someone an awesome pet, but not our awesome pet.

I’ve done a massive amount of walking this weekend (for me) and whilst I’ve knackered myself doing it, I feel a sense of achievement for it – whilst sleeping on the sofa watching the TV through my eyelids to catch up obviously J

We have a tiler coming round to quote tonight for the bathroom to work with the plumber, a person coming to do the gardening regularly on Friday, and once all that is done hopefully that’s the lot for the big expensive house stuff for a while (please let it be the end for a while).

Woohoo – on a completely unrelated note, I now have a fully functioning set up at work now.  A real keyboard and a laptop that can plug into the dock on my desk so I don’t have to always have a power supply plugged in (seriously this is like waking up and discovering it’s not the 1960’s any more)

We’ve reactivated Gousto for a couple of weeks for dinner inspirations – it’s seriously made us much better at just whipping something up from some bits and pieces and a few store cupboard ingredients – plus it means I use all those mysterious ingredients I bought for the odd recipe and wasn’t sure what else to do with them – many bottles of things for Chinese type recipes are now being regularly used.

We have Friday off to attend a wedding in Bletchley which I’m very much looking forward too. Of course this requires a sitter for the pups as we will be gone several hours so I’m currently waiting for quotes from Tailster but checking other options with our regular pet friends too.(Tuesday Edit – All sorted Denise is coming to stay with them

SHIIIT – Just realised that the gardener chap is coming Friday --- ARSE ---- messed that up royally – re-plan re-plan DAGNAMMIT L (Tuesday Edit --- all sorted he’s coming on Wednesday instead – erm that’s tomorrow - YAY)

Bloods were taken last Friday – I’ve currently been the first person in the queue on the phone to the doctors to get my results for nearly 10 minutes, so lets see which happens first – I’ll finish updating this and publish without results because I’m still on hold, or there might be results in here J (of course if I’m still on hold and I don’t publish this for another day I might not be quite so chirpy about it LOL) (Tuesday update – I’m now picking the paper form of them up from the doctors and will *allegedly* remember to pick them up on the way home so I’ll publish them tomorrow)

Dammit – it’s Tuesday

 – YAY it’s Tuesday
-        Shrove Tuesday
o   PANCAKE DAY

YAY for pancakes, boooooo for not having published this yesterday though.

In my defence after a day at work then coming home to meet with the tiler (very nice man) and being so tired after the weekend I forgot to pick up my blood results last night and then just forgot everything else I needed to do.

Bella is still being rather odd since we lost Amber, it’s almost like she is afraid of the lawn in the back garden and she has taken to toileting in one of the borders and just running round the patio. We’re hoping that with some tidying up in the garden (tomorrow) and time she comes round. It must be so confusing for them, she just went away, the humans are sad and they don’t understand where their friend went. All we can really do is give her lots of love in the meantime.

Hope you’re well and making the most of life

xx

4yrs 9 mths - It's safe - I'm 'normal' again

We go to collect Ambers’ ashes from the pet crematorium on Saturday which I’m sure will be emotional, I have a print of her paw print to collect and a ceramic impression of her paw print. I’ll be getting another tattoo in the coming weeks so she can leave her paw print on me for ever. Need to have a think about where to have it and a design for it. I’m thinking something with a flower or brightly coloured butterfly

There really wasn’t much else happened last week, mostly feeling sad and recovering from storm Cali and preparing for storm Dennis … both had us holed up in the house avoiding the high winds and rain, K9 Pleasure Park is waterlogged and surrounded by great big trees which have a tendency to fall down so it was closed for the safety of both people and dogs.

 I have my monthly bloods this Friday only this set and 3 more to go (and they might yet morph into a different set in prep for Ocrevus assuming it’s approved by the board) I’ve now joined some of the Ocrevus communities to learn more about the treatment. Things I thought I knew but was wrong about …. First infusion is done in 2 parts 2 weeks apart not in one go, then after that all in one go …. Okay then J

Last week (and the 2 weeks before I guess when Amber was so poorly) seems to have really sucked every last drop of energy out of me. I took the dogs to a new Private Hire park yesterday for a run, they had a whale of a time with new sniffs, new trees, a whole load of agility equipment that they had absolutely no idea what to do with. The hut was warm and dry with a comfy clean chair running water and power – for the KETTLE …. Cup of coffee and a biscuit while the dogs run themselves to sleep – don’t mind it I do thank you very muchly. So what I was going to say before I got distracted was that walkies was okay because it involved far less walking and far more sitting with a cup of coffee supervising (which with given low energy levels was perfect and Winston and Bella had a ball – and lost 2 balls J).

We’re getting there with the quotes to get the bathroom sorted out although the tiler the plumber usually uses seems to have vanished off the face of the earth so I’ve contacted a local one who comes highly recommended by many people in our local community Facebook group to get a quote from him.

Last I guess is a reflection of my madness, I looked at the rescue page for the rescue we got Winston from and I saw a beautiful boy who might make an awesome addition to our pack. I mentioned that I’d looked at their pages to Gareth and that they had a lovely hound there, when he asked which one I told him and showed the picture and he said he’d seen him too …… I guess we need to have a chat tonight about things and see if it’s something we both want / need and if it would be the right choice for us and the pups.

So that’s it for this week, I’m me again and no longer a weepy mess (tomorrow will be the exception) I can think of her with a smile and with my eyes rolling (her snoring and farting were legendary – particularly the farts which could literally have people retching with tears rolling down their faces J)

So as usual it's taken me all week to get round to finishing this and publishing it - it's now Friday

Got stabbed this morning … 3 months of Lem Bloods left to make the 5 years …. Then the new stuff to follow on.

Love and germ free hugs to you xxx

4yrs 8.5 Months - Heartbroken and so very sad

There are times in your life when you have to do something that you know is going to make your world crumble and your heart shatter into a billion pieces.

Yesterday Amber went over the Rainbow Bridge to go and be with her first human mum, my mum.

It was the right time, she was ready and she needed us to be strong for her and we were but oh god I’m a mess, I can’t stop crying, I’m typing this I’m crying, I’m at home with Winston and Bella, I’m crying, even driving into work this morning – crying, I’m just a complete mess.

There’s been other stuff this week, there’s the whole ‘coming out’ about me feeling quite excited about upcoming Ocrevus - trying a bit of ‘strange’, having a little ‘treatment on the side’ of Lemtrada - yes it genuinely feels that just thinking about it is cheating / planning an affair / betraying Lemtrada.

Okay so let’s all agree that right now my head clearly is not in a ‘normal’ place, I’m pretty messed up right now and talking complete and utter bollocks because it’s that or just sit here crying all day in the middle of the office thus confirming everyone’s suspicions that Tracy’s lost it …

So I’m going to stop here, go and have a bit of a melt down and aim for normal next week. Much love to everyone bearing with me xx

Run free baby girl, you will always be in my heart

 

Time for something new - going to war again

Please read the below with positivity

I wrote it with positivity and I’m excited about what is to come

This is going to be a long and emotional post so please bear with me, I suspect there’s going to be a lot of thoughts and emotions that will be coming out and I’m sorry but there’s going to be some bad language.

When I chose Lemtrada and started writing about what my hopes and expectations were I was always pragmatic and accepting that it’s not a ‘cure’ and was never billed as being so. You can hope and dream that it will be ‘the one’ but never forget that it’s a dam to hold back the flood but it doesn’t promise to make the water disappear. (I’m sorry if you’re reading this and English isn’t your first language that might read as nonsense)

I met with my neurologist yesterday and we agreed it’s time to look at doing something again.

So near to the 5 year mark and my MRI’s are stable, there is no ‘new’ disease activity or active disease.

However ……

The existing MS though has progressed in the last year. My strength, walking, tremors in my legs have all become worse, it started around March, slowly, stealthily and the changes were so subtle and quiet that it was easy to overlook and blame other things like my age, weight, lack of going to the gym any number of things.

I’m incredibly disappointed with my immune system for not ‘remembering the bloody message’ it got it really well for the first 4 years.  I feel like it’s betrayed me, broken my trust, it’s disappointed me enormously.

It’s like having a friend who you know can be a bully, but they’re ‘okay with you’ so you co-exist with that friend and it’s a good life, but that friend has been sneaky and mean and cruel to me behind my back and now I have to defend myself and fight with it.

I didn’t want to, I didn’t start this shit, but it’s going to be bloody sorry that it messed with me.

We’ve talked about the options, and settled on putting me forward for Ocrevus rather than a 3^rd round of Lemtrada – it’s more targeted halt the progress of existing disease.

It needs to be approved by the board then scheduled so overall could be about 3 months before it kicks off.

It’s important to make it clear that Lemtrada hasn’t ‘failed’ for me, it did EXACTLY what it was supposed to do for 5 years – it’s stopped new disease in its tracks and it’s STILL WORKING – STILL DOING a grand job of that right now as I type this.

5 YEARS of no new disease in a progressive condition is a BLOODY BIG WIN and I’m grateful for that. Even the newly reinvigorated old stuff isn’t as bad as it was 5 years ago so that’s a big win too and now it’s time to circle the wagons and defend myself again.

Lemtrada never promised to fix what was already broken, for a long time it seemed to have fixed everything. The previously damaged bits were quiet and didn’t bother me, but in the last 10 months their voices have been getting a little tiny bit louder week after week, month after month, such tiny little changes that they don’t register until you look at them as a whole.

The fight goes on with a slight change of weapons – in my head this is like a new release of the Call of Duty game …… cool new toys, a different map layout, same objective – hunt it, kill it, kick it’s arse and win at all cost.

I’m not going to stop writing, the transition from Lemtrada to Ocrevus is a story that needs to be told and I haven’t seen anything written that follows on from one to the other (but to be fair I haven’t ever looked for something like it either) It’s going to become something a little ‘extra’ about moving on and keeping fighting I think.

There may be a bit of a rebrand in the coming weeks to reflect that this is a Journey and that sometimes our plans change and we need to adapt but the journey continues regardless. This is about fighting back against MS, we have many weapons at our disposal and whilst Lemtrada has worked for me, it’s time to move on to the next phase.

It really is all good, it’s not a failure I’ve had 5 good years of my brain not being damaged further it’s given me 5 years of breathing room.

Please don’t see this as a bad thing

I would do it all again in a heartbeat !!!!!

So FUCK YOU VERY MUCH MS – I’m coming for you again and you didn’t win last time so expect to get your arse handed to you again.

I’m happy to talk if you have questions, my email contact is on here, get in touch.

If you’ve clicked here from Facebook my PM Inbox has plenty of room to touch through there too.

Now where did I put my flaming sword of kick arse ???

Oh yes there you are my shiny little friend