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

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

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

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 12^th and 13^th February bedroom 1 and en suite.

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

Wednesday 16^th February kitchen.

Thursday 24^th February Summer room

Friday/Saturday 25^th 26^th utility and hall.

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

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

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

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

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