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

Tuesday, 1 December 2020

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

Tuesday, 17 November 2020

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


Tuesday, 20 October 2020

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.