waiting

Why am I like this?

~ somethinginthewayshemoves

If you are a regular reader you will know that I have been going through a process of diagnosis related to Long Covid complications. I had hoped that I would have definitive answers by now, but alas, my body is being a dick.

When last we spoke I was awaiting tests to confirm or rule out POTS. Well, after it seemed unsafe to continue with the first part of that test, the second was scrapped. Now I have more waiting to do. The consultant will decide our next move. I’m really disappointed as I had thought we were close to diagnosis. I know the idea of hoping for positive tests might sound strange to most, but the sooner my condition is labelled, the sooner it can be treated. Being chronically involves so much limbo. Waiting to see drs, waiting for tests, waiting for treatment, waiting to see if you respond. Having someone say this is definitely the problem and here is the plan, is a huge relief.

White women wearing large glasses and a mask is looking at camera
Worn out after test fails.

In the meantime my spoonie adventures continue. Lots of pain, fatigue and dizziness are the norm. Fainting at the drop of a hat and constantly fighting to catch my breath have further restricted my activities. I spend way too much time at hospital appointments, and too little doing what I love. I’m struggling, but trying to remain even a little upbeat. On we go.

Long hospital corridor

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The Fear…

~ somethinginthewayshemoves

I planned a really lovely weekend. I was going to visit a friend I haven’t seen since pre pandemic. She lives by sea and always makes me giggle like a maniac. I was so looking forward to it, but my body had other ideas.

ly is in a hospital bed wearing a face mask and hospital gown. She has leads attached to her chest

On Friday evening my chest pain got really bad. Then I had a fainting spell. As soon as I managed to get on my feet I would faint again. Sitting on my hall floor with my head spinning and heart pounding I felt scared.

I wasn’t scared of one particular thing; the fear was in the uncertainty. Not knowing how bad this is. Not even knowing what exactly this is or if it will ever go away. I have felt so fragile and vulnerable in these last few months. I haven’t been able to trust my body at all.

I have gotten used to my body failing me, but this has been on a whole new level. Every time I stand up my head spins and my whole body tingles. I can’t catch my breath, I don’t know if I will be able to stay on my feet. I have always prized my self sufficiency and it feels as though it has been slipping away.

My weekend in hospital hasn’t changed anything. Drs gathered some more information, but they couldn’t solve the problem. I await appointments with specialist consultants. Hopefully they can get to root of my long covid complications. The truth is I don’t even want to consider living like this permanently. It’s just too terrifying to think about.

For the moment I am happy to be home with my furry little nurse. I’m trying to rest and not stress about all the things that I am not getting done.

Black cat snuggling on blankets being petted

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Month by month…

~ somethinginthewayshemoves ~ 1 Comment

There is a particular torture in waiting for your period to arrive when you wish it wouldn’t. Analysing every sensation in the run up to your due date. Trying to decide if your sore back is a period sore back. Being almost certain you kind of smell a menstrual type aroma, but also thinking maybe last week’s nausea was morning sickness. Counting the days. Marking the calendar. Trying not to hope & trying not to lose hope.

Each month is just a microcosm of life. Watching, waiting & knowing time isn’t on your side. Doing your very best not let this desire take over. Working hard to ensure not realising the dream won’t break you. Constantly weighing up how much more you can take.

I’m lying here kidding myself that the hot ache in my thighs doesn’t mean the blood is on its way. I’m reminding myself of all the wonderful things I have. Attempting to hang onto how grateful I am. I know how much worse life can be. You can be happy with the consolation prize. Almost is better than nothing. We don’t always get everything we want, right?