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

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 ...