Hi how are you ?

Hi Fran,

I'm sorry you're having a difficult time with the medical profession.

I was lucky that my GP eventually believed me. I have slowly improved over time. The last thing to ease was the brain fog. I only have a small amount now and then but nothing like I was having. My fatigue is nearly gone, I'm just about back to normal.

It's taken 16 months. I haven't worked in that time but was fortunate to have enough accrued leave. I am going to return to a part time role doing less and working for myself.

Everyone is different, but I think the only way to recovery is complete rest. I'm also on the stations ad part of a long covid trial, not sure if that's made a difference. All the best 👍. Happy to answer any questions.

Thanks KJ

I'm one of the lucky few that works in a profession where I qualify for WorkCover. So getting doctors support in the start was a real struggle. I still occasionally have to deal with unbelievers when my doctor is away. I found the anxiety of dealing with them sends me in a complete spiral of full on symptoms again.

The fatigue is a challenge. If I do anything that requires use of muscle strength or endurance my body starts to cramp up. Now I am hopeful that there will be a time when my life will become near to normal.

Luckily my work is very supportive. I work a few hours a day for only a few days a week in a completely non taxing role. If it gets too much I can leave early and go home to lie down.

I notice the slightest improvement each week..... So I try to stay positive and hopeful.

Things that help me

- meditation , listening to a calming meditation from a free app whilst laying on the bed or reclining on the couch

- doing what I can when I have energy eg cook dinner mid morning instead of 6pm.

- cook easy meals such as curries in the slow cooker, they have minimal preparation time and can cook away all day.

- I set reminders on my phone to do tasks as soon as I know about them or I'll forget eg order meds from chemist, call Jane for her birthday ,I'll set 2 reminders for the day I need to do the task in case I forget the first one 😅.

- I keep notes on my phone in case I read information or hear about something to do with Long COVID that I might want to follow (cause I'll never remember it later) Articles, trials, meds, support groups etc.

- I rest when my body needs to, this has been the hardest, by nature I'm a workaholic. I have a few good days, do too much then crash and sleep for a whole day. Pacing is definitely the way to go. If I can't get going, I don't worry, I rest until I can or there's always tomorrow.

- I am very lucky I have a lot of leave that I can take from work and know that this is not the case for everyone. If I hadn't been able to rest I would have had to have resigned by now.

Hi there @KJ, I'm really sorry to hear that you feel like you're living in limbo, that must be tough at times. My name is Kylie and I'm the Community Coordinator in the forums. It's so nice to meet you 😊 You mention that you feel like you're not moving backwards, so perhaps that's the silver lining just for the moment? Your list of things that help you is wonderful, thanks so much for sharing with us all! It seems like you've found a way to make your current situation work for you, as much as is practical. Using notes on your phone is a clever hack for memory. Do you save them into an app? I often have a bunch of ideas or see a Tweet that I want to save and I'd love a suggestion for how to best collate them all. I don't have Long COVID, but I do have chronic fatigue, and so much of what you've listed here crosses over with the techniques I've used over the years. Are you familiar with the spoon analogy? Thanks again for sharing your tips. We've created a post over here especially for self-care tips living with Long COVID. If you have the energy (I know it's a finite and precious resource!), please feel free to add your tips there too if you like. Hope you've been having a great week! Kylie 🌻