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


1 comment:

  1. Hi Tracy nice to hear your nearly mended! Have caught up on your blog to find your starting ocrevus...did u not have a round 3 of lemtrada? Jusy wondered why if not...your looking well nice hair do! Do hope your arthritis pain continues to improve too sending my best wishes Helen

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Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ? Well the Crohn's is under control and back to how it's always be...