Corona Virus Musings

 

It feels almost over the top to say it, but it’s true – we are a medical family. Medical in the sense that we have a child that has complex health needs. Our Amy is 6 years old. She requires 24 hour around the clock care. She is an absolute delight and I am privledged to be her mum and carer.

I’ve stayed quiet mainly about this whole corona virus thing. Half of me thinks what will happen will happen… I already have great hand hygiene, I clean loads, I’m quite self isolating in general anyway. I think to myself we’ll be fine, we’ve had enough bad luck!

The other side of me is freaking out when going to the supermarket and not being able to buy many of our staple everyday items. A lot of our everyday items differ from what would be a “typical” shop for someone else. I worry about people stockpiling medication and ours not being available. I worry about if the suppliers stuggle with the demand and we can’t get hold of Amy’s formula. I worry about what if Phil or I got ill – who on earth would care for Amy!? Not being able to get some of her meds might be okay, but not being able to get her epilepsy medicines could be fatal. Not that I’m told there’s a shortage, it’s just the mass hysteria and media is leading me to become a bit paranoid.

In some ways I feel our country (UK) hasn’t panicked enough about it. It seems elsewhere everyone has stopped flights incoming and outgoing, and that schools are shut etc. I wonder really if we should all be on lockdown for a while? Just until this all sort of blows over. I was told the other day a vaccine probably won’t be ready until the end of the year. I still don’t fully understand how it all came about. There are 5 cases in our town right now. People keep posting stats as if they are reassuring but 3% or something die. And people are like “well they had underlying conditions” or were old whatever… but that doesn’t make it okay!! We need to look after our most vulnerable more than ever before.

Today she came home from school a bit chesty. It happens. Especially this time of year when the air is still cold and there’s lots of viruses going around. A cold can often land us in hospital and can also take Amy much longer to recover from than others.

She has needed her inhaler, a nebuliser and some suction since coming in. One of her two stoma sites is sore so that has been cleaned and redressed and some protective barrier creams on to prevent further acid burns from any leakage.

Her feeding pump runs 24/7 and is on charge. The suction machine has been antibac washed and is also on charge.

Everyday feels a bit like running a mini hospital. Sometimes intervention is minimal but other days it can be more full on. Thankfully we don’t require home oxygen and if she does need oxygen we are in hospital anyway.

I was shocked today when I saw the lack of pain killers, lack of toilet roll (why!?!) and so on. Thankfully Amy’s nappies are now on prescription due to her size, she’s doubly incontinent and needs regular full outfit changes due to her gastro issues. Sometimes we have to supplement her nappies with size 8 pampers as they’re the biggest you can get in the shop. There weren’t any of those today. Sigh.

I feel like stockpiling is a very selfish thing to do. Also it makes other people panic and stockpile too. I have purposely not ordered more medications, or bought any toilet rolls etc. We have what we need and people need to just be sensible. I really don’t get this whole pasta thing. Why not buy a load of veg and make lots of soup and freeze it or something?! It’s all nonsense.

I really hope in a few weeks time we look back on all of this chaos and it becomes part of the past. Our GP is only doing phone appointments. Lots of group events cancelled. School for now is open, but I’m not sure it will stay that way. Part of me wants to keep Amy off – if she picks anything up it can be really bad. But the rational part of me thinks no don’t be silly, just carry on with normal life.

I felt really anxious this morning. I have no idea why. I just felt really angry and sad.

I’ve been driving a courtesy car wheelchair van for a few weeks now. I had to go and get petrol again. First pump didn’t work. Then I couldn’t get the petrol cap off. Then it wouldn’t go back on again. Then I got in the shop to pay and realised I didn’t have my card. Stressss.

I then went to the shops as we needed bread. I got to the shop and it was the busiest I’ve ever seen it on a Friday. People are frowning and barging into each other unapologetically, the lighting was bright, there was constant noise. I honestly felt ready to have a panic attack and I’ve not felt like that for ages. I grabbed what I needed and made a hasty retreat home.

I thought when I got home I’d want to just rest and sulk for a while, but instead I got busy mowing lawns (first time this year), cleaning windows, and just generally getting on with things. Before I knew it Amy was home and it was all systems go to keep her occupied. She got really angry when I changed her nappy and pretty much battered me with her legs. She is so so fast and strong it’s mad. I don’t know how I didn’t have a black eye. She swung her legs with such vigour that she kneed herself in the face. No nosebleed this time but she was very distressed. Keeping her safe is getting harder as she gets bigger and stronger. I found out the other day her sling that was ordered can’t be got as the company are no longer trading. So disappointing after a long wait, so waiting to hear what happens next. She can’t have just a standard sling, she’s very dangerous with her movements. So even though we have a hoist at home it’s actually safer (just about) to lift her, but this is getting tougher on my back.

My eczema is the worst it has been for ages. Doing the garden for some reason has made my hands red raw. Loads of cuts and redness. Whacked some elocon on earlier, really need more. Could do with going to the GP. I was at the GP last week due to my monthly pains being so bad. I was fearing the return of endometriosis or cysts or something. I’ve not had my results yet so will probably call next week so see what’s going on.

I’m not entirely sure the reason for this post, I just figured I haven’t updated in ages.

I’ve been loving “my dad wrote a porno” on podcasts by the way. I am on series 5 and I only started it a month or two ago! Also loving Ed Gamble and James Acasters “Off Menu” podcast. I find that playing these podcasts whilst I do my jobs really helps lift my mood and distract me.

Anyway. Hoping everyone is well. Bye bye for now. Time to go and start cooking tea.