Dropping the veil

Some may say I overshare on social media but recently I’ve been a bit more reserved…certainly when it comes to some aspects of my life.

I’ve decided to drop the veil a bit and share some of what has been going on for me and for our family.

As you know, I had a stroke just over 6 months ago. The cause of the stroke remained a mystery until around mid-September. All avenues of investigation were taken and only one test remained. I received a phone call telling me I’d tested positive for Fabry Disease. This is a rare genetic condition which causes multiple systems to break down and can cause stroke, heart disease and kidney failure amongst other issues.

About a month ago, I experienced some very strange symptoms. I didn’t actually follow this up with my doctor until about 2 weeks later. I had a gut feeling about what might have happened. Then the doctor said what I had thought – probable heart attack.  She referred me off for cardiac investigation which I will be having tomorrow.

Our family is going through the wringer right now. We have no energy to fight these battles but no choice either. We’re struggling in so many ways – emotional, physical, financial. Sean is working as many shifts as he can to keep us afloat but all either of us want is to spend time together. We don’t know what my prognosis is. The GP has said to “make the most of life”…which is a lovely sentiment but not one you really want to hear from your doctor!

I don’t want anyone to think I’m going to die tomorrow (although, I’ll admit there is a part of me that is pretty scared about that possibility). I think I just want people to cut us a little slack and be considerate. Sure, the immediate shock of the stroke and its impact on our lives is dissipating but we have a really long journey still to go and some of it is still rather scary for us.

If you are a person inclined to prayer, we would certainly appreciate if you would offer one for us as we battle each day to keep going.

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To whom it concerns

Time for a #mymusical2018 post.

In May 1999 I was living in Ireland. I had moved into a flat on my own and I had nothing. I didn’t even have a bed. I lived that flat for 9 months and slept on the floor on a a borrowed 1.5inch thick mattress from a sofa bed for the first 6 months.

I was so poor I couldn’t afford to even pay the 60p bus fare each morning to get from my flat in Berkeley Street to my job at Guinness. I walked the 3km there in the morning and about 4km home each night because I’d detour to get groceries most days.

Around that time I had saved enough to make a reasonably substantial purchase. You’d think it should be a bed but, no. There were other things on my mind. Three things to be precise:
May 21 – Gay Byrne’s final Late Late Show
May 22 – FA Cup Final
May 29 – Eurovision Song Contest

You guessed it. I bought a TV. On Friday 21st May, 1999. Just in time for Uncle Gaybo’s last show.

I got it in a little shop possibly in Parnell Street or maybe even Summerhill. I had only moved over there about 6 or 7 weeks earlier and I knew how to get from Phibsboro to St James’s Gate and pretty much all around the city centre but beyond that I was flying blind. I remember carrying this darned heavy thing all the way home. I also remember I came home through Mountjoy Square which was very unfamiliar territory for me.

I hadn’t money left over for dinner that night because I’d spent it on the TV but I think I managed to pop out to the corner store a few doors down to get a packet of Tayto to eat while watching the show. I also had a bottle of wine in the flat which I’d been given. I didn’t have any glasses. So, on a mostly empty stomach I watched Gay Byrne and drank a bottle of nondescript red wine straight from the bottle. All of it.

I don’t really remember much of the show. Between the wine that night, sustained lack of nutrition and constant walking, I fell asleep pretty quickly. I woke for long enough to see him get a Harley from Bono and Larry and then I was gone again.

Jump forward in time to last night. I was in the kitchen and playing some music off my old phone. An old favourite came on and Sean and Snugglepot started dancing to it. It was To Whom It Concerns by Strictly Fish – a very late 90’s remix of the theme tune for The Late Late Show which was released around the time of Gay’s last show. I’d bought the CD single at the time and listened to it constantly back then.

When I hear it, I’m suddenly 23 again and somewhere between buckling under the weight of a CRT TV around Mountjoy Square and passed out on the threadbare armchair in my flat that night. We listened to it again this morning as the working man and the kindy girl got ready. It’s such a happy tune. You can’t help but have a smile on your face.

Lessons in success

I used to think a successful day was one where I’d changed the lives of my clients by empowering them and blowing their minds with kick-ass information literacy skills. Getting a large group of highly qualified medical professionals to learn how to effectively and efficiently locate quality information which I had also taught them how to critically evaluate was pretty high on my list of good ways to spend my day.

Then my successful day was one where I’d taught my daughter to feed herself, or sit up, or count or made her laugh. Being the best mum I could be and giving my daughter the best start in life was my top priority

Then success was a day where I had played the organ and sung at a funeral and my music had touched the hearts of the mourners, bringing them peace but also closer to God and comforted in their loss.

You get the idea. Success is relative.

Post-stroke, a successful day might be getting out of bed, showering myself, getting dressed, getting my own breakfast and lunch…and that would be about it. Any more than that is really a little greedy.

In the past week or two I have had fewer and fewer of those successful days. I’m starting to count a successful day as one where bodily fluids behave themselves.

It’s taken me far too long to start thinking about this but perhaps I shouldn’t be placing so much worth on being successful. Or I should change my idea of what “Success” means. Perhaps it should be addressing questions like “Was I kind to myself and others today?” “Did I smile or give someone else reason to smile?” Perhaps success is just being a good person.

Perhaps today was a successful day.

Ruptured me throat

I’ve been off the blogging air for a couple of days now. Sorry. Today’s return will only be brief as I’m quite tired already and it’s not even 10am yet.

There’s an old Peter Sellers song that I have been searching for for years. I had misremembered the lyrics which is never a good start for a song search. The only bit that I could really recall was the line “ruptured me throat”…which is how I’m feeling today.

On Monday I got a call in the afternoon from a nurse wanting to go through a checklist ahead of a procedure I was booked to have on Tuesday. The only thing was that I had no idea that I’d been booked for said procedure! I’d been told that there’d be a few weeks on a waiting list and then I’d be contacted.

So, I fasted on Monday night and got up at 5:30am yesterday (Tuesday) to head in to The Prince Charles Hospital for a transoesophageal echocardiogram (aka TOE). This was to confirm whether an anomaly in a previous standard echocardiogram was in fact a hole in my heart which could have caused a clot to go to my brain and result in the stroke that I had.

I’ve been suffering a little with cold symptoms (cough, sinusitis) so the idea of facing a procedure that involved swallowing a camera made me a bit more anxious than it otherwise might have done. I was meant to be conscious for the camera swallowing bit but I found that I was unable to swallow and I was gagging from the moment they put the awful banana flavoured anaesthetic spray on my throat. Incidentally, that was heralded by the anaesthetist saying “I’m going to put my strange banana in your mouth.” I suggested that perhaps some people might not appreciate that kind of behaviour. Typical dirty-minded me. The nurse sniggered. Anyway, they could see I was starting to have a panic attack and was gagging and retching so they fully sedated me immediately and performed the procedure.

Since rejoining the waking world, my throat feels dreadful. I was warned of this so I’m not surprised. I also have some swelling and tenderness in my jaw and neck. The silver-lining to my stroke cloud is that I can only feel it on one side of my neck/throat. Yay for the stroke!

Anyway, I’ll leave you with the Peter Sellers song which now forms part of #mymusical2018 as well as #blogjune.

WWVTT

Welcome to the weekend wrapup, voice to text edition.

I have spent most of today in bed resting. This followed an episode which began during Mass this morning when I couldn’t walk properly or raise my arm. It felt like a worsening of my symptoms. All day I have been trying to determine is this just a bad day or have I suffered further damage (e.g. TIA, another stroke). I don’t know the answer to that so I’m erring on the side of this being a bad day.

I haven’t blogged since Friday. My wrapup of Friday and Saturday is essentially the same. I have been touched by the generosity of friends, friends of friends and even complete strangers. My last comment on Facebook was about how I had not been granted a claim for sickness benefits from Centrelink. (The reason for the rejection was provided to me and it was suggested that there may be a more appropriate form of assistance than that which I applied for. I will be looking into this further). It prompted a number of people to donate to the Chuffed campaign which was set up for me. I am humbled by the generosity of these people who have contributed. I am also grateful for those who have shared my plea to their own circles of friends.

Chuffed

I didn’t blog yesterday. I had a lot going on. Getting my holter monitor off…going to the hospital for rehab clinic…stuff.

By the end of the day, I was actually quite wiped out. However, there was a pretty important highlight of the day that I need to acknowledge.

My friend, Nicole, set up a crowdfunding page for me on Chuffed.org.  I’m so grateful for all of the support I have already received from friends and family. My road to recovery is going to be a long one and through this Chuffed campaign I may have the opportunity to have some assistance for the future.

To give you an idea of the impact on my life, here are some things that I have had to modify or install since coming home from hospital after my stroke:

• replace all taps so that I am able to turn them (bathroom, kitchen, laundry)
• replace the plumbing for the shower so that I can bring the shower head down while I shower sitting down
• shower chair
• walking stick for daily use
• wheelchair for distances over 100 metres
• install a support rail in the shower
• install a support rail in the toilet
• fix recliner to provide leg support while sitting
• steps to get into bed
• looser clothing so that I can dress myself (due to lack of movement/manoeuvrability)
• …and more

These are just some of the things where I have had to commit my money or will need to in the near future. Right now, I’m not able to work and I have no income or even government assistance. As I said, I am grateful for the assistance that friends and family have already provided by way of meals and/or cash. Some of the things on the list (e.g. plumbing which was close to $3000) are too big for one person to help with so we’re asking for a little help from a lot of people.

I’d like to thank Nicole for getting this started. And I’d like to thank all who have donated and all those who will donate. I am humbled by your generosity.

If you can contribute, please check out the page: https://chuffed.org/project/fiona-murgatroyd

Halter AF!

Not me.

I have never been able to comfortably wear a halter neck top or dress. I’ve tried a few on over the years but they weren’t for me. I did once own a red and white gingham halter top back in the 90s for one summer in Ireland. It looked cute on me (back when I was a size 10) but I always felt a little uncomfortable.

A HOLTER on the other hand is similarly uncomfortable. Oddly enough, I think I’ve spent more of my life in a holter than in a halter and, also oddly, felt more comfortable in the holter than the halter.

I’m in a holter right now. Fortunately, I only have to wear this for 24 hours rather than the originally planned 48.

As for the AF… My reason for wearing this is more to do with the MEDLINE definition rather than Urban Dictionary.

Me