Sunday, 18 September 2022

8 years and a week ago today

 It was Friday night Gareth and I were walking round Tesco's in Chineham doing the weekly shop when all of a sudden the world started going dark, I almost knocked my teeth out on the handle of the shopping trolly as my legs gave way and the pain in my head that had been constant since Monday when the 'pop' happened became far far worse.

Of course the Doctors surgery was shut for the weekend by then so we had to call Hants Doc the out of hours service who insisted I got straight to Basingstoke Hospital (that's where Hants Doc were based) I wasn't there long when they put the wrist band on me and told me I wasn't leaving.

A bleed in my brain they suspected - off for a CT Scan straight away and a night in the Acute Care Ward.

When morning came they talked of 'shadows' in my head. They could be bleeds, strokes, possibly  tumours or MS

Did you ever wonder how you could ever hope with everything inside you that it was 'only' MS ??? 

That weekend with everything in me I hoped that it was 'only MS' because that was the one that wasn't potentially fatal.

The next day they talked of MRI's and lumbar punctures - the possibility of Lyme disease while I lay curled up in the hospital bed with all the curtains drawn around me wearing wrap around sun glasses and listening to 50 shades of absolute turd as an audio book

Sunday morning came, I'm still sitting like a mole but the banging in my head is a little less severe than it had been. The curtains around my bed are now pulled back so I can people watch (through those ever so attractive wrap around shades). 

Late morning the attempts to do a lumbar puncture start ......

    -  5 attempts where they missed completely and on one rather spectacular 'miss' they hit the nerve for my right leg and it shot up in the air in an attempt to 'Eric Cantona' the head off the doctor who'd arsed up the first couple of attempts.

Then they give up and decide to send me up to theatre later to get it done where people have more experience at these things 

It gets a bit fuzzy at this point by the time I'm taken to theatre it's probably 7-8pm my back feels like I've Gallen on one of those spiked balls on a chain you see in things like Game of Thrones and now I'm in theatre and I can't remember if they succeeded on attempt 3 or 4 I just remember sobbing and saying yes every time they asked was it 'okay if we try it again' 

I think it was 9pm when they got me back to the ward - they'd said I could go home if I was okay 2 hours after the Lumbar puncture and I was damned well going home. I could take my own pain meds, lie in my own bed with the curtains closed and feel sorry for myself in comfort but the hell was I spending another night in the hospital. Gareth came and brought me home at 11pm.

It feels surreal reliving this by writing it down again ... like it happened to someone else and I guess in a way it was someone else - the other me - the one 'before MS'

I have changed - a lot, there's no denying that. Mostly for the better rather than worse I hope.

Life goes on - so I'll pick up my sword and go to war once more xx

Tuesday, 2 August 2022

Wedding things - ours and other peoples

 Quick update on life, we had out wedding anniversary over the weekend - a very lovely meal was enjoyed at the Italian in Newbury that is now our favourite in the area (for Italian food) 

 We're off up to Scotland on Saturday for a wedding on Sunday - the beautiful Aeleana and her lovely husband to be Micheal. Allie is one of my 'acquired' sisters - well her whole family are acquired really, her brother Steph and mum complete the set. I have my outfit, Waze to guide us for the 440 mile drive and a play list with 32 hours of music on it.

 The dress I will be wearing is one I haven't been able to fit in for over 9 years and I've had it shortened to a cocktail (spelt wrong???) dress length - the 3 1/2 stone of weight loss is really noticeable now 😎

Just got to make it to the end of the week with my sanity intact I guess.

Hope you're well

I've done another video on the tube thingy which shows the changes with the weight loss and the exceedingly long hair - enjoy - laugh at me whatever you need

Take care 

Much love xx




Friday, 15 July 2022

Oh dear - where did that time / weight / pain go?

 Perhaps it's the heat wave, or possibly menopause brain - so sorry I've not posted for a month.

There has been some drama and a trip to Wales involving a very badly behaved and gangrenous Gall Bladder which had to be removed from the bagging area and then huge amounts of antibiotics to ensure there was no infection left. The 4 1/2 hour drive either way was brutal and it took a few days once home to simply catch up on the rest and let the sore shoulders loosen up again.

We've had Gareths parents here for the weekend for a lovely catch up and wonderful food.

I had my injection in my hip, it's been pretty well behaved since then but it wasn't a pleasant procedure and whilst the lovely doctor said I was very brave, sadly she didn't give me a lollipop or a sticker 😂😂

So here in the UK the temperatures are apparently hotter than Jamaica right now - there are 2 ways to tell if someone is British - do we like queueing (yes) and are we complaining about the weather (always) 😂😂 

I think I've previously mentioned in here that I think I was born in the wrong place because like a lizard or a snake I like to be warmed by the sun - I now formally withdraw that suggestion 😂😂😂 what was I thinking ? I'm ginger - I burn on a cloudy day, I'm middle aged, menopausal and have MS - I'm not built for this 😂😂😂😂

On the subject of 'project Tracy' - I've now surpassed 3 stone in weight loss - I'm actually only 3lb's away from 3 1/2 stone now (that's 20.9kg if that's how you recognise the numbers or 46lb if you can't do the stones thing) I'm into my first pair of 'aspirational' jeans easily and if it ever cools down enough for me to get the motivation up I might be into the middle pair too, but it's simply too warm to even try right now 😂😂😂 - It's still a work in progress, but I'm getting there and it's not horrible.

It's our 11th wedding anniversary on the 30th so we're back to the Hand and Flowers for a lovely meal, my new office desk is due next week so I'm having a clear out this weekend to get ready for it. We're up to Scotland on the 6th of August for the wedding of a beautiful lady who I'm proud to regard as a sister - I definitely need to invest in a new outfit and hat for the occasion - it's going to be so good to get together with the Scottish clan, it's been far too long and there are 2 little clan members that I've not even met in person yet.

It's Friday, the weekend is coming, the BBQ's and pizza oven are being put through their paces and life is good.


Hope life is treating you well and you stay happy

Much love from me

xx

Friday, 17 June 2022

Hip procedure booked, weight loss continues and by heck it's warm

 So first lets address the big hot, sweaty elephant in the room .... (not me) summer is here and the UK is hot hot hot. Now with the high number of latent Scottish ginger genes I possess this was never a great time for me in the past. To pinch the line from the film Terminator - 'anyone (who's ginger) not wearing factor 1,000,000 is going to have a really bad day' - it really does sum me up perfectly. I burn through Factor 50 in the UK when it's 15 degrees and sunny - yes that sun block you can use on a newborn - no use to this  ginger at all.

I saw the hip specialist last week and had an X-ray taken too. Turns out I have Osteoarthritis in my right hip - the first official arthritis diagnosis although it's been mentioned occasionally over the last few years. Not a surprise really since both my mum and grandmother had it. 

I'm booked for an ultrasound guided injection in my hip next week in Ascot (once the racing is over and done with) steroids and pain killers initially - apparently it should give a good idea where we need to go from depending upon the results.

I'm still losing weight, still working with the Physical Trainer 3 times a week and life remains terribly 'beige' if I'm going to be totally honest. There's not a lot to report on in my MS world, it is what it is and I'm working hard to make it better.

Hope you're taking care of yourself and those you love xx

Wednesday, 1 June 2022

Round 4 done, nearly 3 stone lost and hip update

 I had round 4 last Thursday and as previously mentioned - I had the fast infusion and I had it without steroids this time 😎

It was all really rather uneventful, if I'm honest - no faster than any other infusion because I got there for 8am, but it was 11:30 before they plumbed me in. I had a lovely anti histamine snooze and it was all done

Unknown to me the woman in the bed opposite had requested a heater be plugged in and then pointed it in my direction so when I was done and unplumbed I had the most horrendous menopause sweat and had to sit down for nearly an hour. Can't really complain as the HRT 'happy patch' on my arse cheek are doing a grand job - I've had 2 full on hot flushes in a week instead of the 10-15 a day I was having before the happy patches.

The drive home from the hospital was a windows open, coffee on tap and loud rock music affair, I got home we ordered takeout and by 7:30pm I was fast asleep. All things told the Flush really flattened me - I think I'd have been okay if that hadn't happened, but who knows.

The diet is still going well. I'm now coming up on the 3 stone loss mark. I've lost 2 dress sizes so far and over 30 inches cumulatively. I've still got a long way to go but it's going really well especially in conjunction with the Physical Training sessions - I have muscles - MUSCLES in places I've not had muscles for many many years 😎 we're not talking substantial body builder stuff here, just some visible proof that I'm trying bloody hard to get myself back

I had an MRI last week too on my 'gippy hip' and wouldn't you know it - it's definitely leaning towards the 'knackered' end of the spectrum. The Spine guy has referred me to The Hip Guy (yes I know there's a song about that) so more news on that front a week tomorrow.

I managed to do Costco last weekend with a trolly as a walking aid (Bob was flat so I had no choice) and I was still playing catch up after a day visiting Claire, taking the boys to the park, taking the Pizza oven to her so she could enjoy Gareth's home made stuff from the comfort of her bed.

Life is good, if we had more sunny days and less overcast, cloudy and rainy it would be better

stay safe, stay well, much love from me xx



Monday, 23 May 2022

MRI bloods and Round 4 preparations and HRT

 So my 4th round of ocrevus has moved forward to Thursday next week, all but 1 of the required bloods have been done (the Lymphocyte Subset levels can't be done locally but have been agreed to be done on the day by the charing cross MS Nurse team) It's also been agreed that this time I can have it without the steroid 'starter' ...... the steroids have always hit me hard, they mess with my bodies temperature control for weeks and on top of my Menopause hot flushes thats was going to be an absolute nightmare - so this time I'll be taking my shot of Ocrevus neat 😎

I've had an MRI this week on my hip thanks to the Spine guy and hope to have news on that soon. 

The next thing its HRT - OMFG - miraculous stuff - slap a magic Conti patch on my arse and suddenly I'm human again - I have energy I feel 'normal' 

I kid you not - I popped it on Saturday afternoon and bang - Sunday morning I woke up refreshed because I've not had hot flushes repeatedly through the night that kept me awake, I walked around Costco yesterday with only a bit at the end where I had to use the trolly as a walking aid - it wasn't pretty - I looked likeI'd been on the gin already with the wobbles and oh my was I slow 😆 but I did it. We popped to Waitrose after that and I did it again walked mostly a little trolly action at the end.

By dinner time everything ached - but then you'd expect that right it's been a good couple of years at least since I did that - and hey I earned those aches 😎

This morning I've had my physical trainer session and smashed it - especially the leg exercises which up to now I've needed up use both hands on a chair to maintain my balance - today I stood next to my office chair and rested one hand on it and did them all without a wobble.

I'm hoping that this is another step in the right direction for me, 

Roll on Thursday, lets get round 4 done and kick MS up the arse again 😎😎😎


Wednesday, 11 May 2022

Spine guy appointment done, diet update and 16 days to Ocrevus Round 4

 Time seems to whizz past so fast these days (I know thats a getting old thing)

This weekend the painter is coming back to do the final 2 rooms in the house that we didn't have done last time. Our new headboard which I swear we only ordered a couple of weeks ago (but I reality was just over 2 months ago) arrives on Friday.

I'm back in for Ocrevus round 4 on the 27th and as a pre-emptive strike my docs have prescribed some 'anti-UTI' meds so I don't fail the test again - I'm actually rather looking forward to it even though I know it's going to wipe out my Covid antibodies and T-Cell response again. Fortunately I don't seem to have the 'crap gap' that others report I just stay the same in the run up and afterwards (crosses fingers throws salt over shoulder and salutes the magpie in case I'm jinxing myself but saying that)

I had a 'day out' yesterday - well a couple of hours at the Royal Berkshire Hospital to see the spine guy. I'd mentioned that it might be related to the Facet Joint Degeneration on the right side of my spine but I'm having problems with my right hip - I demonstrated a couple of things that cause pain and weakness then he had me lay down on the exam table and asked me to lift my right leg ... damned if laid out flat the blasted thing wouldn't move. He lifted it up at aright angle then turned my lower leg inwards towards my left leg - all fine - then he rotated it outwards and bloody hell did I yelp .... loudly which was a double surprise for him - one that it went that way easily because I'm pretty flexible but the yelp hurt his ears.

He's asked for an MRI to be taken of it, he thinks the cartilage in my hip is damaged / deteriorating / knackered in addition to my back problem we know about. I can put that through BUPA at least as it's something new so back to the Rutherford Cancer Centre I go for the MRI and then probably a referral to a hip specialist.

He's really chuffed with the weight I've lost and said yes its definitely the right thing if there's a possibility I need that hip replacing and also just for life in general. 

It's over 2 years and 2 months now since home working became the norm, we get out and about again now but I think the paranoia of the last couple of years is going to take a long time to wear off, I still regard everyone walking around as plague monsters.

All in all, life is good some stuff is happening, some stuff is changing and some stuff (ms) stays the same

Stay safe and well much love from me 

xx

Wednesday, 27 April 2022

A VERY long weekend, Gareth's birthday and 'stuff'

We had 6 days off for the Easter weekend, this year Gareth's birthday fell on the Tuesday so we had an extra couple of days to enjoy ourselves.

I got Gareth a Pizza oven for his birthday, whilst I have to admit Gareth making loads of pizza's is not going to be helpful for my diet, it's made him super happy and he's produced some really lovely pizza's and garlic bread from it.

I've now had my 5th Covid vaccination - if there's microchips in them I think that I'm probably now able to communicate with the International Space Station simply by clicking my fingers, sadly I still can't just wave my hand over a chip and pin machine and say 'you have been paid' like a Jedi 😂😂

We've put telescopic draws into a couple of tall cupboards which allowed us to get rid of a load of stuff we didn't know we had and certainly didn't need and rationalise them into a 'dog & cat stuff' cupboard and a larder cupboard. We're so close to the end of the kitchen renovation now, some minor touch ups and one more kitchen counter to be refinished and we are done 

Before


After 
Larder

Dog & Cat Cupboard

In hindsight putting the dog toys on the bottom shelf was probably an error as Winston is straight in there helping himself to tennis balls every time the door is opened - little treasure 😂😂

I'm now doing 3 sessions a week with the Physical Trainer (not because I'm rich and can afford that) he's got a 6 week holiday scheduled for later this year and the 12 sessions I would have had in that time are being popped in now before then. It's helping even more for me to rebuild some strength in my arms and legs. I'm still working on my core with the sit up bench too. 

The one thing that I'm really struggling with right now though is anything that involves 'cardio' - and by cardio I actually mean anything involving e moving around - my heart rate goes crazy and my Fitbit thinks I'm doing cardio when all I'm actually doing is shuffling to the fridge to refill a glass of water. I had another fall on Good Friday and around mid day on the Saturday my heart rate was at 148 beats per minute - the Fitbit recorded a whopping 3 hours of 'in cardio exercise zone' time with me shaking like a leaf - really quite frightening while it was happening which I'm sure didn't help the heart rate one bit.

I've asked Gareth the help me get the recumbent bike set back up properly in the upstairs room so I can use that to see if I can get something like stamina going - one problem I don't know where he put the power supply for it when it was moved up there - hopefully we will locate that this evening.

In the interim I ordered myself some of the 16mg CBD capsules from CBD Brothers as an experiment to see if they will help with both my anxiety over the heart rate thing but also to help me get a better quality of sleep which I'm hoping will help with things .... they arrived on Saturday so today is day 5 on them and as I'd hoped I'm sleeping better than I was before and my mood and heart rate are far more normal now. I'm taking 2 a day, one in the morning and the other about 40 minutes before bed. So far my experiment is working 😎

I've got the spine guy appointment coming up on May 10th and then round 4 of Ocrevus at Charing Cross on May 26th (which yes is highly likely to kill anything created by vaccine number 5 😐

Oh one thing of note - I've asked both my Doctor and my Neurologist to get me scheduled for Evusheld - it's a 'pre-emptive' treatment for the immune suppressed for - yes you guessed it Covid ..... I've said if I have to drive to Edinburgh for it I'm fine with that but would they please sort it - no news yet fro either of them despite a chaser email and asking my Doctor while he did my vaccine. Watch this space.....

Apart from that all is pretty good in my world.

Hope you're taking care of you 

T
xx

Friday, 8 April 2022

Feeling brave, the new range and weight loss update and it's effect on my MS and yet another covid jab planned

 The Physical Trainer sessions continue along with me using the sit up bench - I can do 100 sit ups per session without breaking a sweat and hold a conversation - I've even started to do the last 30 with my arms crossed over my chest 'army style' and the 30 before that with the sit up and turn motion - I have to do them as the last ones because if I do them earlier I can't finish 😂 I even asked the lively Micka about his group sessions and which he thought I might be ready for - we've decided on Kettle Bells and I've ordered a light weight set for home so I can train to get ready for training 😂

The new range has been delivered and installed in the refurbed kitchen and looks awesome - it's also got proper temperature control and glass in the doors so you can see the food cooking - a massive improvement on the hideous old blue beast that came with the house.

I've lost over 2 stone since the start of the year and I'm well on the way to the next 1/2 stone - it's really showing now, I have cheek bones again, collar bones too and hip bones are making themselves known too. I have a waistline that I'm really rather proud of and I\m into pair 1 of my 3 pairs of 'aspirational jeans' without a struggle. 

I'm in nowhere near as much pain from my back and my hip as the weight comes off. I'm also not quite as 'MS narcoleptic' - I can stay awake in the evenings instead of crashing on the sofa and leaving Gareth to his own devices every evening. (not sure he thinks thats such a good thing as me being awake cuts into his gaming time 😂😂)

I think it's a combination of everything I'm doing but it feels good to have some control again of my own fate. I've got the spine surgeon appointment on the 10th of May and I really do want a new number at the start of my weight by then - its an in person appointment and I think Chris will be shocked at the change in me since he last stabbed me in the back 😂

We've had Gareths parents down for a visit and done yummy BBQ food and with Gareths birthday coming up on the 19th I have plans afoot for celebrations.

Lastly I have another covid vaccine booked for the 20th of this month - my spring booster - this will bring my jab count up to 5 😂 the question we're all asking is will it have any effect this time? It will be 6 weeks before my next Ocrevus (Round 4)  so if there's ever a time it's actually going to work it's this time ....... of course it could once again be as useful as chucking a wellington boot filled with water down an alley 😂😂😂 - I have noted that if each one has had a microchip in it then I'm probably now going to be a personal wireless access point and will be able to communicate with the international space station with the click of my fingers. I wonder if I''ll get a different flavour the time ???

Life is really good right now, long may it continue

Thursday, 24 March 2022

Feeling proud again, our kitchen refurb and spring is here

 Feeling proud part 2

I decided my new muscles should not just be the ones in my arms and legs so I invested in a sit up bench with the leg 'rungs' so your legs are hooked in place and a movable back (because of my spine problems I needed it to be capable of not going completely flat..... yet). 

It arrived the Sunday before last and after assembly I 'mounted' it and started doing sit ups. The first time I managed 16, the 2nd I did 17, the 3rd 20 my aim being to do two or 3 sets each day to build up my core muscles without the need for someone to help by holding my feet / legs. It felt like by just doing it woke up my abs and reminded them that in years gone by I used to be able to sit ups for fun. By last Friday I was doing 100 in each set.

My PT was staggered at how far I've come in a week, but not quite as staggered at I was that was able to stand straighter - especially when going up stairs to bed at night.

Apart from that life has been pretty much business as usual with the added bonus of us (mostly Gareth) refinishing the butchers block counters we have in the kitchen - they look like brand new counters now, the scratches and water marks are all gone, the really dark varnish they were finished with replaced by a clear wax/oil finish. They're significantly lighter than they previously were and the kitchen looks brand new now.

It's all come up so beautifully that whilst having a week off this week Gareth has the dining table in the garden and thats being done too. Our last part of the project for the kitchen is replacing the old navy blue gas range that was left by the previous owners with a lovely shiny stainless steel one with glass in the doors so we can actually see our food cooking rather than having to open it up and let the heat out.

Lastly - SPRING IS HERE - YAY

The sun is out, the patio doors are open letting in the fresh air (and wasps - I hate wasps) it's not freezing cold any more and I've already worn shorts once (not in public obviously 😂😂😂)

I'm generally feeling really bright and up beat, positive and hopeful that with being back on the Cambridge Diet, the PT work and my own extra effort with the sit ups that life is what I make it and I can help myself and mentally that's doing wonders for me.

Life is good here, I hope yours is good too

Much love xx

Tuesday, 1 March 2022

Feeling proud me, more back news and I'm turning 50 this week

 Things I'm proud of this week

  • I pulled my weight with the work to get the rooms sorted before and after the rooms were redecorated 😎
  • I also pulled my weight with the kitchen refurbishment work which went a little beyond the planned cupboard repainting and also included the tiles in not just the kitchen, the utility room and downstairs loo too 😎
  • Weigh in last night confirmed I've lost 12lb's so I'm really hopeful that by this time next week I'll be reporting a stone or more loss (50th birthday permitting)
The house looks unrecognisable now, so light and bright, more modern and inviting with all of those little 'things' that my head would catalogue as I walked through a room as stuff on the to do list all completed. Such a massive boost for me mentally to look round and feel proud of our home and the effort we have put into it.

MS wise everything as usual remains incredibly dull and unchanged

Fitness wise the twice a week with the Physical Trainer this morning yielded the surprise result of me squawking 'I've got muscles' 😂😂😂 I was working through the usual resistance exercises and I happened to touch my left bicep - and felt something I haven't noted in a long while - a muscle, quite an impressive one without trying to do a 'gun show' pose, it was just there feeling nice and firm and there's a matching one in my right arm 😎

With weight loss and exercise I'm looking forward to seeing other bits of me return, collarbones and hip bones, cheekbones and maybe muscles in other places too.

Of course the exercise and weight loss are for me, I want to be slimmer and stronger for me. I also want it because these problems with my back - well they severely affect my right hip too and my next appointment with the spine guy is May 10th and I need to be in far better shape for that - if he says I need a new hip or something like that then unless I shift the chunk they'll just refuse to do it until I have dealt with the weight.

And finally .... 50 years old on Thursday (March 3rd)

.... when the heck did that happen ??? 

In my head that really doesn't make sense because I'm pretty sure I'm not 'that' old !!!

Somewhere in the Time Space Continum something has clearly malfunctioned. 

This is just a big mistake and Captain Kirk and the Star Ship Enterprise will be by any minute to straighten it all out and I'll be 35 again 

Clearly this 50 thing is making me delusional 😂😂

Until next time - take care of you xx

Wednesday, 16 February 2022

House renovations, valentines and an appointment for my spine (again)

We are 5 days into the almost full repaint of the rooms in the house. It's a bit chaotic, preparing the rooms for painting -- clearing out everything and relocating stuff temporarily. Today's post comes from my temporary office at the far end of the kitchen while my office (the extension) gets it's facelift. 2 bedrooms are transformed, as is the landing and stairs, we've even changed all the fixings for curtains and stuff so they're looking amazing.

After today, the painter is out until next Thursday so Gareth and I will be completely renovating all the cabinetry in the kitchen, repainting everything to brilliant white to brighten it all up for when the walls are done next Thursday because it's the next room on the list.

I've got a floor specialist coming tomorrow evening to quote for refinishing the wooden floors downstairs, I'm going to ask since he's here could he do the wooden kitchen counters too - what's the worst he could say - no - nothing ventured nothing gained 😃

It will be really lovely to have the house beautiful and bright and to have 'our' stamp on it.

I've got a phone appointment on the 25th that the Spine and Pain team have set up for me with the same guy I saw privately - I'm going to ask about my right hip too because that's not in a good place.

Week 1 back on Cambridge has gone tremendously well. 8lbs off (3.6kg if you're that way inclined) a very good start. I had the evening off on Valentines Day but I didn't go wild and straight back on plan again yesterday with only 48 hours out of ketosis so I'm feeling fabulous agin today. Next planned night off is March 3rd for my 50th which I'm very much hoping Gareth has a nice treat planned for 😎. It's going to be a long journey but I'm hopeful that I'll be hitting target some time around our wedding anniversary at the end of July.

The diet of course is going to be really important if I need to have something major done for my hip - can't be lugging all the extra weight around with that.

It's been really quiet and uneventful here, everything's opened up they're starting to treat covid like seasonal flu now. I'm still terrified of catching it, I have no idea how much long a mask will be part of my life for outside the home but thats okay.

By the time I'm comfortable with having a houseful of people all having a great time they're not going to recognise the place :)


Take care, stay well

Much love 

xx

Tuesday, 1 February 2022

T-Cell Trial Test done, Getting stronger and an appointment about my back

 So the back appointment first, the nice IPASS (integrated pain and spinal services) team have set me up with a spinal specialist on the NHS - hilariously it's the same chap I saw privately through BUPA - he's going to ask for the Facet Joint Injections to be done on the NHS for me. I will be happy if that can be arranged and it can help with my back problem. He's an orthopaedic flavoured doctor so I'm going to ask him to take a look at my right hip for me too because that seems to be part of the problem - or maybe another problem entirely - getting old is painful.

My T-Cell trial pack arrived over the weekend so yesterday morning I was lancing my fingers and bleeding into a tube again so that it could go straight back to them in the post without 'going off' in transit. I have no idea how long it will take to hear something back from them, but it would be nice after 4 vaccines to hear that those T-Cells have learnt something about how to fight Covid.

I had 3 sessions with my PT last week to help make up the missed ones over Christmas while he and his family had the plague. I'm getting stronger, I can lift my legs a little more now and whilst getting dressed is still a little more complicated than world peace and certainly not graceful - it's getting a little less hard.

Life here has as always been terribly dull, haven't been anywhere, haven't done anything except work from home and all the usual daily stuff. I did manage to book a table for us at The Hand & Flowers (Tom Kerridge's restaurant) for our wedding anniversary (July 30th) without having to go through the usual calling up and begging to be added to a waiting list.

I'm actually going into work tomorrow for the day, some of my team are heading in so I'm going to join them and just have a day out - how bizarre is that - going to work is a day out 😆 Robobob is charged and ready to go. It will be nice to just talk to other humans who don't live in my house.

Valentines Day is coming up, I've booked a 'finish at home' Valentines feast from Wellington Farm Shop - a Beef Wellington, starters, desserts and sides. Just need to sort out a card and gift and I'll look frighteningly organised (especially with our anniversary booking) 

Oh Oh Oh and exciting news - after the near 3 years to get the bathroom done fiasco - The house is being re-painted inside - ceilings, walls, doors / door frames and skirting boards ..... THIS MONTH 😎

Saturday/Sunday 12th and 13th February bedroom 1 and en suite.

Monday and Tuesday 14th 15th February guest bedroom plus landing and stairs.

Wednesday 16th February kitchen.

Thursday 24th February Summer room

Friday/Saturday 25th 26th utility and hall.

Sunday 27th lounge with feature wall to be wallpapered on Monday 28th.


Okay now you think I've been replaced by a robot don't you ...... who is this organised person posting on my blog ???


It's me - honestly


I'm sure I'll be back to my ditzy last minute dot com self any day soon


Take care and stay well, much love xx

Monday, 24 January 2022

Blood results back, vaccine No4, spine stuff and the great escape

 First things first, the bloods came back on my Patients online record. After vaccine number 3 there were (unsurprisingly) no covid antibodies there but surprisingly there were also almost no B cells so that nixes the 'Ocrevus just isn't working' theory too. I've emailed my neurologist to let him know it's all done and the results are there. Just need to wait for the face to face appointment to come through now I guess. Rituximab, Cladibrabine and a higher dosage of ocrevus have all been mentioned, but with the blood results it is probably all a bit moot now 😄

I had vaccine number 4 the Saturday before last with the usual sore arm as a response to it but apart from that it was very uneventful.

We stupidly also had a night off dry January and overdid it a bit, stayed up too late and I sat out in the garden in the cold reading a book and I pretty much seized up - everything hurt the next day - and the day after 😂😂 - it official I really am getting old.

I've spoken to IPASS today the pain management people, The spine specialist I've been referred to ....... wait for it ....... the same guy I was seeing privately ..... 

Apparently he's willing to request funding to do the facet joint injection on the NHS .... I guess we will have to wait and see how that all pans out 😀 There's radiating pain, localised pain and now just for fun my right hip is not in a fun place either.

The weekend was a wash out, my first migraine of the year and it was a horrible one. It hit early Saturday afternoon, some sumatriptan pulled it back to bearable late Saturday night but the sick shake feeling stayed with me until late Sunday. Thank goodness 5/6 a year is all I get, I know a few who get a couple a week and that must be awful.

By last Tuesday when the lovely Micka arrived for my Physical Training session I felt human again. The difference is starting to show now. The increase to my upper body strength means I can get down to the floor with something resembling 'dignity' now (it's not pretty but I'm not just falling) and as long as I can brace my arms I can get myself up with a little dignity too despite the whole right leg / hip / back doesn't work or have any strength at all thing. It's all about angles and leverage and the right thing to hold on to and bloody minded determination but I can see some results and am very hopeful that I won't have to sleep on the kitchen or bedroom floor again any time soon. 

According to last weeks announcements come the end of the month the UK is 'going back to normal' so we are back to our offices masks are a voluntary thing (except on public transport) I have to admit the thought of this fills me with trepidation, 

It's not just the being around people thing, it's having to manage Robobob without a hoist. Dealing with rush hour traffic again, I guess I just don't want to have to do that 4-5 days a week any more, 1 or 2 at the most I think, if the last 2 years have taught us anything it's that we can do what I do without the need to always be crammed into the office. 

That said there's talk of a few of us meeting up there tomorrow and I have to say I'm quite excited to see real live humans again. It feels almost decadent to be planning a day out to the office - in my head I can hear the theme tune for The Great Escape playing 😎

Look out world here I come



Thursday, 13 January 2022

Failing Ocrevus and an atrophied lesion in my spine

Yesterday I had my appointment with my neurologist to get my end of year report and the MRI results. 

I had an idea that he would say something had happened, I'd asked for the MRI because I'd been having some muscle tightening in my legs and the twitching was more pronounced. I was expecting to be told relapse but to be told an old spine lesion has atrophied was unexpected. 

He also mentioned that my CD20 B cell count before the November Ocrevus treatment was extremely high. It had been before I started O last year but it should be very low once you're on O and mine isn't. 

Ive popped into London today to Hammersmith for some blood tests - one to check the CD20 B cells and a bonus one to check for Covid antibodies 😄 (I have my 4th jab on Saturday so now is a good time to check the levels from the 3rd one) - its going to be interesting to see what that actually says .... if O isn't killing off the B cells you'd thing they slurped up the vaccine and made antibodies ..... or alternatively did the O kill any that were born???

The T cell test will happen after the 4th so again that might have some interesting results.

We talked about Rituxan and Cladribine (mavenclad) as alternatives as well as another round of O but at higher dose than the previous 3 with more checks in place to see what it's actually doing in when my 4th round is due in May. I also asked about the possibility of a 3rd round of Lemtrada but was told that Lem is less effective with each round and that a 3rd wouldn't be very effective at all..... that makes me sad 😥

All somewhat un-nerving but whatever the conclusion I'm going to carry on kicking the MonSter in the balls at every available opportunity.

Dry January is in full effect along with healthy eating and my annual lose some weight effort. It's actually going really well - mostly because Gareth is doing it too - properly this time because he wants to not because I've bullied him into joining / helping me.

That really is all I have for you this time I'm afraid, everything else is just very BLAH to be honest, working from home going nowhere, seeing nobody and just chilling. 

Actually one more thing, my PT sessions ...... I'm getting stronger, I got off the floor twice on Monday using my desk to help me up, but I did it myself in 1 attempt both times 😎

Is it wrong to celebrate that I'm now less scared of falling because I might be able to get up with the help of inanimate objects??

stay well 

much love

T

Wednesday, 5 January 2022

The Girl who dodged Covid, Happy New Year & a T-Cell Trial - and a new theme for the blog

First things first - you're not in the wrong place, but the blog site has had a bit of a facelift to make it easier to read .... sorry if I've confused everyone. I went to have a read of something and realised the old background did it no favours and made it difficult to see some of the text parts. 

Well that's my excuse .... the fact that I now have different glasses for seeing, reading, working and combinations of all these due to my advancing years might also be a factor 😂😂😂

I really got used to the routine of getting out of bed when I wanted to not because I had to. Funnily that didn't mean sleeping in until lunchtime - it was more like an extra 40 minutes here and there than a 2 week long sleep marathon but I could definitely get used to that - time to up my lottery game I think 😎

This year all the planning and preparation paid off, we were where we needed to be when we needed to be there and we didn't forget half of our stuff (or if we did then we haven't missed it yet 😂😂) 

The Christmas stuffing (not a euphemism) was lovingly prepared by myself and Gareths Dad and it was absolutely epic. The Turkey was great despite a slight glitching in the timing calculation process. There was snow on Christmas Day (well what we call snow in England ..... 3 inches and it was gone by mid day on Boxing Day) 

As you have probably guessed because Christmas 'actually' happened I didn't catch covid from my PT (thank goodness) he and his whole family had it over Christmas which must have really sucked with a little one. I did Lateral Flow tests every day and deliberately stayed distanced even though we were together. At least we could be together this year rather than trying to have Christmas dinner together on a Facebook messenger video chat which really didn't work at all last time.

I should add Gareth upon reading the title of this post said 'Well you've done it now haven't you ......' apparently I've doomed myself to actually catching the bloody thing 

So Omicron is sweeping through the country - quite literally. So many people I know all over the country have contracted it in the run up to the Christmas and New Year period or over the same time period. 218,705 new cases yesterday. The stats say 13.6 million Britains have had it and 149 THOUSAND people have died within 28 days of a positive diagnosis - that's completely mental. The UK population is only 68,422,788 people - that nearly 20% of the population have had / have it and that's just those testing because they have symptoms all these people wandering round asymptomatic that we keep hearing about might not be in that number 

I get my 4th vaccine on the 15th of this month. I got a letter before Christmas from Imperial College saying I needed to get a booster done 3 months after number 3. I've just popped up to the doctors surgery to collect the letter  that confirms this and apparently I'm the first they've ever had for a 4th shot - MS and Ocrevus Super Power 😎

I'm also taking part in a T-Cell Home Testing trial to help with information gathering in relation to people on Ocrevus and how our T-Cells learn from vaccines particularly when our antibody response to a vaccine is likely to be less effective. The program manager in me is always wondering about what data is useful and can help with investigations so I've told them about number 4 and asked would a 'before and after' help them with their information gathering - it just means doing the test twice, once before and once a few weeks after - sore fingers for a couple of days is hardly the end of the world 😂

I have my Neurologist appointment next week on the 12th (telephone not in person) so I should get a full review of both MRI's that were done at the back end of last year. I'm also going to ask them to investigate what happened to my historical information from Hampshire Health Authority and Southampton hospital someone told me once again they have none of my MRI's from that time. It does make me  wonder how they continued to say NEDA since Lemtrada when allegedly they have nothing to compare to before I moved to them. I'm sure that's going to be an uncomfortable part of the conversation - after all I've been with them since 2017.

All systems good here, Gareth and I are on our New Year best behaviour, dry January is in effect, healthy eating is being done and I'm back on 16:8 fasting to give it all a boost. 

Happy New Year to you, heath, happiness and love

Stay well

T

xx

8 years and a week ago today

 It was Friday night Gareth and I were walking round Tesco's in Chineham doing the weekly shop when all of a sudden the world started go...