Friday, 30 April 2021

Restrictions lifting and things starting to change

 Here in the UK they're starting to lift some of the lockdown restrictions now. Pubs and restaurants opening although you can have table service to eat and drink outside. Most places are taking bookings so that they don't get too busy and life has a small amount of normal returning.

I have my next round of Ocrevus on May 27th and happily the urologist has put me on a round of antibiotics as it was noted that I had a UTI at my appointment last Monday ..... he's all given me some tablet in a stick HRT things which are not for 'oral' use 😆😆

The sun has been shining here for days, it looks glorious outside but there's a pretty brutal crosswind that goes right through you. 

I had Claire and Melly over on Saturday with Claire's beagles Toby and Harry - talk about absolute bedlam - 4 dogs doing laps of the garden. Bella was totally in her element, she had 3 boys to herself and loved it. I'd ordered afternoon tea for us all and we sat and gorged ourselves on pastries and cakes with soft drinks - all very grown up and responsible.

And now it's been 4 days since I wrote the above ^^^

I'm truly rubbish at keeping this updated these days - sorry about that

So apart from Ocrevus in 4 weeks what else is new ? 

Today would have been my brother Ian's 46th birthday and I've spent a fair amount of time this morning with tears running down my face, not sobbing and going to pieces, just emotional seeing all the pictures in my Facebook memories. 

We've had a home delivery box from Northcote arrive today with a yummy feast in it, gosh but thats a lot of food - we've judiciously started at lunchtime with the starter and soup course and will work our way through dinner later 😎 and then if we can scrape together 3/4 others maybe a poker game this evening.

A long weekend of giggles with Comedy events this weekend - Just The Tonic Comedy Club on Saturday night with Ed Gamble performing in the extension on Zoom and Sunday Evening a Facebook Live from Scott Bennett. 

Next Friday we have a 7 course Vegan Meal being delivered by Home-X (as a carnivore that this really excited me should give you an idea how much the 3 other meals we've had recently have impressed us that I want to give this a go) I so hope that once the world becomes a little more 'normal' that businesses like this one continue to do this rather than just going back to the old ways https://home-x.com

Then it's all going to get swirly .....

03/05 - Having a back, neck and shoulder massage and she's going to do some work on my legs too

11/05 - Blood Test  to check up on my naughty thyroid's current state of play. 

12/05 - Gareth is booked for his first Covid Vaccine (okay it's not me but it's exciting that his number has been called)

14/05 - Off to Watchet for a week long holiday

24/05 - Gareths car is being fully Valeted (I forgot to mention to the guy doing it that it hasn't been cleaned in 5 years)

25/05 - My car being Valeted (I did mention mine is full of dog hair and he may find a long lost sausage roll in the back somewhere)

27/05 - Charing Cross Hospital - Ocrevus Round 2

In June I think I'm going to have a bit of a rest 😂😂

Stay well and take care, much love from me 

xxxx

Wednesday, 7 April 2021

I 'got out' this week

 It's been 5 months since I have been able to see Claire what with lockdown 2 and the Covid situation.

It took weeks of planning between us to just arrange a day where we could get together in her garden and catch up with yummy food but we did it.

 😎 

Easter Sunday was so much fun, the 3 acquired sisters together again. The sun was shining, we had an amazing 'grazing box' of nibbles and mint chocolate Aero tiffin. We were able to sit out in the sunshine (once Melly and I had built the most complicated set of garden furniture in the world) Claires beagles spent the afternoon zooming around the garden with next doors Labrador puppy (which is huge and has minimal coordination as puppies do) 

It was wonderful and emotional and Claire's cancers are not being kind - it feels so much like we've been robbed of precious time with her for the last 5 months and we now have to find a way to make up for what we've lost and make sure that whatever is coming she has fun and hugs and love to make up for what we've lost.

Gareth and I did an amazing lamb leg dinner on the BBQ and then as I often do I fell asleep on the sofa 😂😂

The 3 day week last week was lovely and a 4 day one this week equally so.

5 weeks left until we have our week away for out holiday and 7 weeks until Ocrevus round 2.

April brings an awesome month of spoiling ourselves with lovely food

this month we have the following scheduled 


April 10th - home-x.com/products/roast-by-the-loveable-rogue-chicken-april-2021


April 19th - home-x.com/products/home-by-nico-april-2021-menu (this is for Gareth's birthday


April 30th - www.northcote.com/at-home/gourmet-boxes/


April fine dining sorted even if we aren't allowed out 😎


The pubs open here again (for outside drinks and dining) on April 14th so hopefully we can just get out together for a couple of hours with the dogs and do something (anything) different.


MS wise nothing is different, the good side really - I have a telephone appointment with the Neurologist team next Monday where I will be told the long awaited MRI results (which I've seen online and are happily unchanged once again)


08/01/2021 MRI Head :
08/01/2021 MRI Spine cervical
Clinical History

RRMS on ocrelizumab treatment to r/o new activity in view of DMT monitoring

Report


In comparison to previous imaging of 1 year ago there are no new lesions seen within the brain or cervical cord. No evidence of PML or any second pathology.

Conclusions: Stable appearances


I guess they'll want to talk about how things have been since December and the last Ocrevus infusion - perhaps any 'pre-treatment' tests before the next infusion on May 27th


I'm also hoping that in the coming weeks we will get to see Gareths Mum and Dad when they're allowed to visit inside the home - first stop will be Gareths grandmother naturally but hopefully a quick stop with us on the way home again.


Hope you're taking care of you and yours xx

Tuesday, 30 March 2021

Is that a light I see at the end of the tunnel

 It's now officially been over a year since the Covid lockdowns started 

  • More than a year since we saw family in person. 
  • More than a year since we saw friends in person.
  • More than a year since I went into work and saw colleagues in person
We've had single short respite where we got out a couple of times for Covid safe meals (about July and August last year) 

A trip through the Costa Drive Thru is now classed as a treat and a 'trip out' where we interact with a human who doesn't live in our home.

Costco and Wellington Farm shop are the only places I've set foot in for more than 6 months

I've had both parts of my Covid Vaccine now so I'm cooking up some lovely antibodies to protect me against the virus.

The Easter weekend is coming 4 days off (for Gareth it's 5 because the company he works for gave everyone April fools day off too)

In May we have a week in Watchet (last years week replanned)

May 27th I have my next round of Ocrevus 

On top of all that allegedly life here in the UK is planning to start returning to what it was before all this got weird and awful.

Being able to see friends and family in person will be amazing and so very emotional

I'm looking forward to getting something done with my hair - it needs some serious trimming and shaping because I'm starting to look a little feral now 😂

Just sitting in a pub or restaurant and eating something cooked by someone else.

By this time next year hopefully this will be something we can look back at and be grateful to have come out the other side

Monday, 1 March 2021

I hate my thyroid - A LOT

 B-Day -2 Days

This weeks entry comes with the unusual name of I hate my thyroid - A LOT

It's true, the stupid little thing is making everything harder. (apart from the usual nonsense)

It has to be Hypo - that's the problem. Hypo often leads to weight gain, and in my case I could blame my thyroid but it really would be hypocritical of me because funny thyroid or not, it was me eating chocolate and crisps and sloshing it back with all that wine...... it might be partially to blame but I''m certainly not without fault.

However; for the last 4 weeks - I've been so very good on my diet - positively saintly in comparison to my usual wild abandon and I've gotten to within 0.4lb of a stone of weight loss - and that burns - it'll probably be gone by tomorrow but that's not the point I wanted it to be in month and it's not :(  - the 18.5 cumulative inches I've lost across the various measurable parts of me are lovely - they're a damn good start  but dammit I wanted that stone.

It's supposed to go at the rate it used to - my plan requires this if I am to achieve my goal and be back in my wedding dress for our 10th wedding anniversary on July 30th (yes the program manager in me does have some contingency built into that) then annoying things like a little hypo thyroid can quite honestly bugger right off because it's really messing with my master plan.

I went with Gareth and the dogs to the park yesterday. It was my suggestion that we walk down to the far end and back so we could sit in the sunshine - and I made it. Such simple things, it's not so very long ago that I jogged around the outside that field (3 years?) thinking I must get back in shape but now I'm really chuffed with a slow stumble down the middle and back again.

Exercise update - total distance completed on the recumbent bike in February - 81km (it's actually become a therapeutic way to get through log dull conference calls 😎)

Times change - I'm doing everything I can (now - yes I know I can't claim to have been completely saintly all along) to build back strength and stamina and a smoking hot skinny bod to go with it (okay that might be an exaggeration - at 48/9 years old things sadly tend to be affected by gravity far more severely than they were in my 20's)

I'm hoping for a miracle - I'm also hoping that I win the euro millions on Tuesday night - one of these is within my control ......

The question you're asking is 'is control within my control' LOL ..... after all I've gotten all excited like this many many times in the years since I started this - you're perfect right to be more than a little cynical about this 

..... watch this space 

The sun has been out here all weekend in Berkshire, sadly yesterday the wind was also back again so whilst it looked beautiful, sunshine blue skies - it was about 4 degrees :-)

Naturally I put shorts and a summer top on to expose some of my lesser seen regions to the sunshine (assuming the vitamin D could find it's way past the goosebumps on my skin.

The BBQ's have both had a work out of course - the charcoal for a spatchcocked whole Piri Piri chicken and the Webber Gas one for a burger for Gareth.

All is beige here - I did have a quick pootle around Costco at the weekend, didn't have a Costa Drive Thru because the queue was mahoosive.less than 8 weeks now until the next round of ocrevus 

Thats all for now, hope you are well xx

Wednesday, 24 February 2021

Losing weight and inches, sunshine and the light at the end of the Covid tunnel

In the last 3 weeks I've made a bloody good start on my diet 😁😀

Tuesday 23rd February

Weight loss 12.6lb's or 5.7kg if you're that way inclined

Inches lost (cumulative total of neck, bust, under bust, waist, arms, arse, thighs) a whopping 19.5 inches

I'm still doing as many Kilometres as I can on the bike and have done 65.5km so far and would very much like to have done 100km but the end of the month 😎

The sunshine is back here in Berkshire and the temperature is rising again. Now if the wind would just bugger off it would be perfect.

There are daffodils blooming around our area and it's all starting to look like Spring is starting to sprung.

Life hasn't really changed much for me, my weekly 'trips out' remain as a trip through the Costa DriveThru. I had a very fleeting run through the local asian supermarket and I'm also seeing the physio once every 10 days again to help get my shoulder sorted after I tripped over the kerb at Costco a couple of months back.

I had a telephone consult with the urologist about the need to pee thing and that's all getting under control now.

Valentines day was lovely the Tom Kerridge banquet was very much an all day feast with a mahoosive Beef Wellington as the star of the show (it was also a day off the diet - YAY carbs)

I've won the Friday night poker tournament with the guys from FF 3 times on the bounce (playing sober has certainly helped with performance)

My birthday is looming on the horizon once again - On March 3rd I'm going to be 49 EEEK not entirely sure when and where that happened because I'm pretty sure I'm only 27 (in my dreams maybe)

MS wise everything remains the same, if anything perhaps the being sober, losing weight and getting some exercise is doing some good - I got up this morning and didn't reach straight for pain killers - in fact I've been at my desk since 8am and it's now 15:30 and I still don't need any and it's been an awfully long time since I could say that.

Perhaps the new office chair has something to do with that ?

Wednesday 24th February

I forgot to publish this yesterday so it's ticked over to another day 

Weight loss now 13lbs 😎

The sun was still shining this morning and the high winds have continued such a shame that it looks so lovely but it's bitterly cold out.

Pain killer update - I haven't taken one since Monday evening - now thats something I haven't been able to say for years.

Post Covid Ox-Az vaccine part 1 - it's all good 😎

Enough wittering from me, hope you're safe and well and take care of you.

Much love from me xx

Sunday, 7 February 2021

I've cycled 20k this week, begun a new diet, not left my home and am struggling with 'normal'

 It's been a while but honestly I'm really starting to bore the heck out of myself, Nothings happening for me or anyone else it's just the same beige every day.

I've started dieting again, Lighter Life this time - I will confess I'm doing it the same way I used to do Cambridge though rather than following their rules. It looks like I'm on for over half a stone loss in week one (including a small G&T related wobble on Friday night) so that's good. Unlike my other (many) attempts in recent years, Gareth is actually making an effort to 'do this with me' ...... by that I mean he's made a few concessions and isn't completely rubbing my face in drinks, chips and bread products.

The Recumbent bike has had a bit of a thrashing too, I've done 20km on it so far this week and there's an intention to do at least another 8km on it later today (although the little voice in my head that is probably OCD is telling me to try for 10km so it's a round number)

MS wise well nothings changed I'm on Oc now, I feel no different to how I usually do so I figure thats good - if something was breaking I'd hope I would notice it.

I have had a bit of a mental wellness wobble in recent weeks, I've had part 1 of my vaccine, everyones getting excited about life returning to 'normal'. Going to the Football and Rugby, going to the pub, Farmers Markets and Country Shows, The Good Food Show at the NEC, a Comedy Gig or the Theatre 

The thing is, I realised I've not done many of these things for a long time, not just Covid Times and Lockdown times, I've been pulling back from things like this for many years ---- probably about 7-8 years if I'm honest with myself.

That predates Lemtrada, it even predates my diagnosis ....... My version of normal has somehow been a Tier 2 lockdown protocol for years ...... I hate that. So once again I'm focusing on reducing my weight, building up strength.

I need to do this for me, watching everyone go through lockdown which apart from the going to work thing was pretty much my 'normal' and seeing how it's affected them has made me take a look into the mirror and I can see those thoughts and feelings reflected in me.

So here's the latest vLog ..... my hair is now super long compared to when I started it :) - it's also partly pink, partly ginger and mouse coloured at the roots ..... I'm probably best described as a 'strangely pink tabby'

Hope you're well, safe and taking care

Much love

T



Friday, 22 January 2021

Winston update, posh food and REALLY exciting Vaccine news

 Important things first, Winston is much better, rest, pain meds and muscle relaxants did the job. He's back going for full length walks again and jumping on the sofa. He has learnt that if he sits and whimpers someone will pick him up but we're not encouraging that sort of behaviour.

We have L'Ortolan a lovely Michelin Starred restaurant near home which has been doing some really swanky 3 course dinners for collection that you finish at home. Over the last couple of weeks we've ordered from them twice and I have to say it's been lovely both times - and super filling on the portion sizes - both times dessert has been saved for the next day because we've been so very full by the time we've finished the main course.

This naturally has led to me thinking I wonder who's doing that for Valentines (because lets face it Lockdown isn't ending any time soon) and magically our favourite Michelin star restaurant The Hand & Flowers in Marlow is not only offering this but it's also delivering it too. This makes me a very happy girl. Haven't got the faintest clue what to do for gifts this year, but at least we will eat well.

Life is the same shade of 'beige' for us as it has been for the last 10 months. We don't go anywhere, we don't see anyone and we're now on first name terms with our local delivery people for Amazon, UPS, Hermes and DPD. 

We are having a 'virtual home check' today for rescue pup that might decide to adopt us. Fortunately its the same people who we rescued Bella with so we are 'known' to them. The boy they have will need to do a meet and greet after the check and obviously how that goes will be the most important thing. Watch this space !!!

So this next bit is going to seem a little odd .... bear with me, the bit in Italics was typed 2 hours ago and the bit below just now

I'm in the next group for the Covid vaccine, exciting times .... 

I will be accepting it unless my neurologist comes back and tells me to hold off for a while because of depleted cell counts and lowered response - I've emailed Mr N to ask if he has any opinion on the timing, but since my friend who's having chemo is having hers and lets face it, in comparison I have an amazing immune response function I'm expecting Mr N to come back and say rollup your sleeves and get stabbed - remember to take your own lollipop with you because they're not handing them out these days.

At 17:30 my phone rang .... 'No Caller ID' ..... it was my doctors apparently they've had some no shows today and had some of the good stuff going spare .... can I get to the Village hall in the next 15 minutes? Also-bloody-loutly I can - I'll be there in 8 and that's with me stopping to put a bra on and changing out of my slippers into 'outside world' footwear.

I'm back and part 1 of the Oxford AZ vaccine is now sloshing round in me doing the leg kicking dance from Moulin Rouge at my immune system saying 'You know you want me' 

I can't tell you how happy and excited I was to get the call and dash out of the house.

Fuck you very much Covid-19 I am now becoming a VERY in-hospitable environment for you :-)

In reality this will change very little for me, I'll still anti-bac everything and everyone I'm aware that just by touching things and touching other things or other people if it was on my hands by cross contamination then I could be moving it around and I want to continue to be part of the solution rather than part of the problem.

If I didn't know I'll end up on my arse and probably back in A&E with something I'll definitely be needing the use of broken then I would absolutely be doing the happy dance right now.

Love, health and happiness to you xxx

Monday, 11 January 2021

So long 2020 - the year that wasn't, Ocrevus, holidays and Winston's injury

 Oh my and here I go again starting yet another post with YET another apology :-(

I'll work through this in chronological order so it makes sense.

Since my last update, I had round 2 of Ocrevus at Charring Cross on December 14th, another super long day with a funky urine test requiring blood tests then disaster, one of them wasn't labelled it wasn't spotted until 11:30am then a 2nd lot of bloods and more waiting. All told I'd been there since 8am (well up since 05:00 and outside since 06:50 to mitigate parking panic) my infusion didn't start until 13:30 ..... SAD FACE :-(

It was all nice and simples once it all got going I fell asleep in the chair and just soaked up the good stuff which helped enormously with the blood pressure checks LOL

Christmas was fun if not the usual way we do things, first time ever I didn't even have to have a token piece of Turkey :-) We had a gammon that I prepared from scratch with a honey. mustard and Orange Glaze, a Free Range chicken and a massive 2 bone rib of beef to roast as the centrepiece - well when I say roast ..... yeah I stood out in the freezing temperature on Christmas Day and I BBQ'd that beast. It was soooooooo good.

Presents were interesting too, definitely the first time I've needed a box cutter for ALL of my gifts (bar one) there was a distinct danger we might be opening light bulbs and cat food from the nice Amazon delivery man but we hadn't dared open anything in the 3 weeks before Christmas incase we opened a gift by mistake LOL

The 'inbetweeny bit' was quiet and uneventful with dog walks and some films and then New Year was upon us. As usual we had to give Winston a Xanax early evening because the fireworks started at dinner time. I spent the night with him curled into me giving him treats every time he didn't bark at the fireworks despite shaking like a leaf. At one point he hopped of the sofa then tried to get back on and missed (stoned on the Xanax) as he fell backwards his side smashed into the corner of the coffee table and that's where the next story starts ......

Over the weekend he got more and more sore, couldn't jump on the sofa any more, yelped and whimpered when you helped him so Monday we got an appointment at the vets, some pain meds and muscle relaxant and 'if he's still bad in a weeks time bring him back'

By Thursday he wasn't better, he was worse, now he barely moved around and he yelped and whimpered when he did so back to the vets (we'd gone from Tier 4 to national lockdown on Monday evening after the 1st appointment) this time I wasn't allowed to be with him while he was examined, I had to go back to the car so naturally I sat there sobbing my heart out. X-Rays needed LOTS of X-Rays, his ribs, his spine, his hips to check for broken bones which would require a general anaesthetic to do. 

He had to be in at 08:15 on Friday morning which clashed horribly with my annual MRI in London at 13:15 - Gareth would be home with Bella and could go collect him when he was done .... didn't happen - at 15:35 as I was driving out of London and called for an update I was told he was just about to be done - emergencies that morning. Please call back at 17:15 for an update .... 

It was 6pm before I was reunited with him, he was very dopey and lethargic but good news .... 

No broken bones thankfully, but he is on more pain meds which seem to be helping if he's not much improved by the end of this week then they'll refer him to a doggy orthopaedic specialist and get him an MRI (bless .... just like his mum) to see if he has a protruding disc or soft tissue damage.

We stayed in contact with those we love by video call and all things considered it's been okay. We've missed everyone terribly but I'm just grateful that we can miss them and see them again. We've had too many friends now who've had Covid or had it take their loved ones from them and they haven't been able to be there with their family at the end.

I never imagined there could ever be a time when it might occur to me that not having to worry because my immediate family are gone that it might actually be a blessing for me ...... 

Thinking of everyone who's having a hard time with this and hoping that they can hold on to their peace.

Much love

T