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.



Monday, 19 October 2020

Don't break your bones it's not a fun sport

It's now over 7 weeks since my 'wrist/hand incident'

I've used the BUPA insurance and seen an orthopaedic surgeon and had the long awaited MRI and the news was not good.

The X-Rays and CT scan were right none of the bones in my hand or wrist had 'snapped' however 2 of them have for want of a better way to describe it 'shattered inside' like a broken egg yolk inside an unbroken shell.

There isn't anything that can be done for it, just time and resting it - and when I say time he's warned me it could take up to 6 months for this to resolve itself. My response to that in one word is FUCK :o(

The thought of no real independence for that long horrifies me.

In better news I'm working my way towards 1 1/2 stone of weight loss ... 21lb's if you're that way inclined or 9.5kg if you're of the other persuasion. Feeling rather proud of myself for that and it can all only help things get better :o)

Life as usual remains very 'beige' nothing new or exciting just more of the same every day.

It's becoming really obvious with Covid still being so prevalent that come Ocrevus time at the end of November and start of December that Christmas this year is going to be a 'home alone' affair for us. Aunty Kathy isn't comfortable with travelling and a packed houseful at Gareths parents for me with a seriously compromised immune system in a high risk area really isn't feasible. Gareth will pop up there for a few days but I'm going to need to stay home possibly 'shielding'

Kinda sucky all things considered but it does open up the possibility of BBQ'ing on Christmas Day some Rib of Beef, a nice chicken and some ham with the usual sides all done with the BBQ - assuming its not throwing it down of course in which case I'm going to have to dust off the range and use the oven for the first  time in a long while :o)

It's also been a very expensive week for me. My MAC (well Gareth's old MAC that I've claimed for the last 3 years) finally gave up and died at the ripe old age of 10 years old. Since neither Gareth or I have any ability to gauge the size of anything, I ended up buying the enormous expensive one as a replacement - and I'm not complaining about that at all it's so shiny and pretty and mahoosive :-) if it lasts as long as it's predecessor then it's a wise investment even if it was a bit of an ouch at the weekend.

I presume the problem I was having doing new video's for the YouTube thing was a result of it's impending demise so once I've put a brush through my hair and look less like grizzly Adams I'll do another one. My hair is so very long now compared to the short haired biker girl look I had at the start of the lockdown. It's not pink or silver or electric lilac now just boring blond - I might do something about that. I'll have to find a new hairdresser too as my local salon didn't make it through Covid and has closed down - such a sad thing to happen.

I hope you're doing well, not going too mad in these very strange times and taking care of you and yours.

Stay well

Much love

T

xx

Thursday, 8 October 2020

Oh dear I'm getting worse not better at this

 Why so quiet ...

Well the broken and dislocated toe healed fine, sadly the broken hand / wrist hasn't 

It's still swollen, in a lot of pain and I have no grip - seriously even holding a full cup of coffee is really painful and likely to result in burns.

I've played the BUPA card with the work policy and this week so far I've seen an orthopaedic surgeon who specialises in hand and wrist injuries. Today I've had an MRI

In the intervening time since the injury, I've had more x-rays and a CT scan - looks like theres soft tissue damage (ligaments and stuff) and possibly theres bones that are shattered 'inside' while the outside remains  in tact ... he described it as an 'unbroken egg but the yolk inside is broken' .... really not liking the sound of that.

Apart from that my life has been even more dull and boring than ever, I've left the house once in the last few weeks to pick up a new painting we'd bought and been to the hospital a couple of times and that's it ... no friends, no family, no shopping, not a damn thing.

The right hand injury has completely knackered my ability to do most things. My left hand hasn't been right for years (pun intended) I have no sensation apart from the buzzing that never stops between the two it's made everything so much more difficult that ever. I can't sit and type for too long, holding a phone / iPad and angling my hands hurts too much 

I can't get Bob in or out of the car so I can't go anywhere without Gareth along with me as 'muscle' so I'm effectively trapped at home unless I'm popping to the local Budgens in the car which is small enough I can toddle around it

Honestly though it's just so debilitating and demoralising to have my world shrink to so very small. My head hasn't even really been in a place to deal with the problem (lets face it under any other circumstances I'd have called in the private healthcare weeks ago) I think isolation is finally starting to get to me and instead of reaching out - posting more, recording my silly video's and talking up a storm on FaceTime I feel like I've retreated further into my shell than tried to escape from it.

Okay this is all rather dark isn't it - I'm sorry

Normal services will now be resumed.

It's being fixed the lovely Charles (the orthopaedic god) will be in touch tomorrow to tell me how this can be fixed and I'll be bench pressing Bob by the end of the month (okay that might be a tad optimistic)

I have my Ocrevus dates now, 27/11 and 11/12 (that's proper date format - day/month) so it's going to be a suppressed immune Christmas for me. With Covid on the rise again it's going to be very difficult to spend time up north - it's currently  high risk area with local lockdowns - need to start making some logistical plans for how to manage that really

In other news I'm trying to deal with being overweight again - in my last few weeks of misery I've lost 15lb's - a stone and a smidge - 6.8kg's (depending on your preference for display purposes)

The fight against the flab is in full swing because lets face it all this shit can only be better if I'm not always carrying the weight of my bloody wheelchair with me in everything I do.

I'll do another video soon I promise (I have a massive spot on my left cheek right now - I mean 48 with a spot ... WTF surely that's supposed to be just teenagers right ? )

I hope you're well, taking care and I'm sorry for disappearing for a while

Hey J-Wildy - thanks for the kick up the arse mate - I needed that xxx 

Thursday, 10 September 2020

The broken toe video

It's taken a couple of days to get this done, 4 attempts to record it with my Mac crashing randomly part way through (although you may be relieved to know that the result is that this one is VERY short)
Ohh and I finally got my hair professionally trimmed and sorted so I no longer look quite to much like Grizzly Adams slightly more feral older sister :-)


Tuesday, 8 September 2020

How many broken bones can you have at once

Apologies for the absence, if you've seen the vLog then you'll know about one of my broken bones, but not the 2nd.
It's been a strange old few weeks, first I managed to break the scaphoid bone in my right wrist in a 'falling down and putting my hand out to stop myself hurting myself' incident which made typing incredibly hard. A week later I managed to catch my little toe on my right foot navigating round the furniture barefoot at home and not only break a bit off the end of it, but dislocate the knuckle in the middle of it too.
All things considered the last few weeks have involved much swearing, crying and general frustration at how bloody hard everything suddenly became having lost my ability to actually do pretty much anything without extreme discomfort and risk of hurting myself again
I ended up at the Royal Berks injury unit and saw the same lovely nurse both times - she has now warned me that this coming Sunday is her last on this rotation and if I'm going to break something else perhaps I should take her chocolate and flowers so it feels more like a real 'date' LOL
I've been up to the Royal Berks today for another wrist X-Ray and this time there were people there at the X-Ray department which was quite strange as the previous visits it's been like waking up 28 days later with me being the only person moving around the hospital. It's all very safe though, very carefully managed and organised so nothing to be afraid of s long as you practice distancing, great hygiene (which we're all very experienced at) and wear a mask.
So hows everything going MS wise ? It's all very much the same if I'm honest, nothing has noticeably got better or worse which is a good thing, lets face it 'beige days' are always a good thing with MS when something else didn't stop working properly.
I've had my blood tests for Ocvrevus. another Neurologist appointment (which might have been in error since it happened on the day when it was supposedly cancelled from) apparently my next contact will be for going in to have the first part of the first treatment (the first Ocvrevus infusion is split into 2 parts 2 weeks apart) - I guess the last few weeks of broken things have very much given me confidence in going in for it so that's a good thing.
Gareth is now going back into work a few days a week, it seems to really make a difference for him, having human contact other than me.
I can go back in to work again if I want to, it's voluntary not mandatory - I have to book a desk in advance to make sure we aren't all coming on at the same time - so if you need to go in and the available and distanced desks are full it will deny you access - I suspect it will be many months before that actually happens. Of course right now I can't even get Bob out of the car let alone back into it so that's not happening for a while yet unless I can plan some 'muscle' to assist. I think when I do it's going to be a welcome change.
I bought myself a recumbent cycle a few weeks back so that I could do some exercise, build some strength hopefully lose some weight and get more fit without actually causing more problems with my middle aged arthritic knees which I really enjoy using - right up to the time I broke my toe - right now the thought of using it terrifies me somewhat but when my toe is better I'll be back on it.
The dogs are still loving that they're never left and we're working on trying to get them used to that again. They're loving that Michelle walks them now rather than just playtime in the garden though.

So I'm popping up another video today to explain the 2nd break on the vLog but here's the last one for you to have a giggle at.

Stay safe and take care
Much Love
T
xx