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

Wednesday, 5 August 2020

It's be a long old few weeks

Hair update - I'm no longer pink or silver or a strange combination of pink & silver which came out electric lilac

Just Ash Blonde now albeit significantly longer than when all this Covid Lockdown stuff started and I finally dared to 'come out' in a video.

Can't quite get my head around how 5 months have just disappeared from the year it seems like such a short time overall, but it obviously isn't and has been incredibly hard and has taken such a toll on so many people, lives and families.

Anyway here we go scary movie time (it's just a short one)


Bad Bad Bad Tracy - Neurologist appointment and Wedding Anniversary

First things first

Profuse apologies for 4 weeks of no updates. I'd say I was busy or out or doing something terribly exciting ...... but lets face it, if I said something like that, you'd assume my account had been hacked because my lack of exciting life is simply a fact of my boring life.

So last week was our wedding anniversary - 9 years and we're both still alive, not in prison and haven't recently had a patio re-laid :) (MANY years ago, there was an English TV show called Brookside where the husband ended up buried under the patio - hope this helps if you're not from the UK or even if you are and aren't ancient)

We had a long leisurely lunch at the Hand And Flowers in Marlow (as usual - I know but we love it there) did a couple of errands on the way home without stress because we had a lovely lady here keeping the dogs company. Four continuous days off though did make for only 2 'constructive' days because the other 2 were horrid hangover days.

I had an email last week telling me my neurologist appointment at the end of the month had been brought forward to August 5th at 10:30am .... it optimistically asked me to go to St Mary's in London for the appointment which I sceptically thought 'okay yeah lets see' to upon reading, naturally 2 days ago I got the follow up Text Message saying 'under no circumstances try to attend in person - stay home we'll call you'

This morning at 10:30 on the dot ... ring ring ... lovely lady to make the preliminary arrangements for Ocrevus .... I'm getting an email later so I can book my bloods - I really do have to go to St Mary's for that - then once the results are back next call will be telling me when I go to Charing Cross for infusions.

I'm quite excited that it's actually going to happen - something to address the PIRA I'm experiencing despite Lemtrada working perfectly to stop the active disease the old stuff started bubbling again and needs a slap

The wonderful MS Doc Aaron Boster describes it so much better than I can - I've dropped him a DM on Twitter asking for permission to share his video's but didn't hear back - Dr B if you're reading this -- sorry and hope you don't mind xxx


I'm having a bit of a 'resurgence' right now, the arthritis pain in my knees had got to the point where I didn't know what to do with myself so I've gone up to 4 of those monster turmeric tablets each day, a huge dose of Glucosamine and a separate huge dose of Chondroitin - the inflammation and pain levels are reducing, today I decided not to take a pain killer this morning and so far that's been the right decision

Wake
Kick Arse
Repeat

The dogs are still loving the humans working from home - it will have been 5 months on the 9th of this month since the decision to come home and stay home was made. We're working on building up time away from them now so that 'when' we go back it's easier for them.

So that's me

Apologies for the absences, I'll try not to be so rubbish

Hope you're having good days and better days

Today is definitely a better day xxx