Lupus
My Weekly Lupus Diary

I Underestimated Post-Covid Recovery

It’s been a horrible week! I wasn’t sure if I would get a blog written today, as I’m finding it such a struggle to write! I just want to sleep, dosing in and out of Netflix series. But then I thought it would be too selfish of me not to write one! Many of you are worried, and many of you have asked me to keep you updated. After all the kindness, love, and support many of you have given me this week, writing this blog is the least I can do!

It’s going to be a very raw blog. So I apologise if it’s full of spelling mistakes and grammar errors. It’s more about getting something out to update you all on how I’m doing! I’m hoping you be reading this blog Sunday night. If I struggle too much to get it all written today, I will just get it out as soon as I can.

I Thought I Was Over The Worse!

At the start of the week, I was feeling positive. I had two negative tests, which meant I could return back to life again. I no longer needed to quartine. I didn’t feel 100%, or should I say my 1000%, but I was ok with that. I knew I wasn’t going to get better overnight. I just told myself, this week is going to be the hardest, but each day I will improve slowly.

People did warm me, things could get worse for me. But I had it in my head, I’m fine! Covid isn’t that bad! With it being a mild strain now and I’ve had 6 vaccines, I’m over the worse, I’m ok.

I was wrong!

On Wednesday, I went downhill fast!

On Wednesday, things very quickly turned for the worse! By Thursday morning, I felt absolutely shocking! I could hardly breathe, my chest was so sore, and I could barely keep my eyes open. It was awful! All I can describe what it feels like is an elephant sitting on my chest constantly!

The day before I had my routine bloods done. I thought to myself, they are probably looking quite good since I’ve been off my Methotrexate for two weeks! I was shocked when my results came back! My neutrophil count was down to 0.5. Which many of you will know the severity in a neutrophil count being that low. It was scary feeling, especially when you know your body is trying to fight off this post covid infection. This was before I even knew about my chest infection!

On Thursday morning, I went to my doctors and got checked out. My chest was infected, I was tachycardic, and I was told it was Covid that has wiped my white blood cells almost completely out.

That Thursday morning I was prescribed an increased dose of Prednisolone, from 7mg to 30mg for 7 days, with a reduceding dose thereafter, till I get back down onto my normal dose again. Along with a 7-day course of antibiotics. I was also told to make sure I’m using my salbutamol inhaler regularly to help to keep my airways open.

4 Days Later

Honestly, recovery is extremely slow! Parts of the day I feel like I am improving, other parts I seem to go downhill. I nearly rang 111 this morning for urgent help, as I was feeling suffocated with my breathing. Luckily, eventually after a fair few puffs of my salbutamol, I finally managed to get my airways open a little bit more, but even now it’s still such a struggle. It’s horrible! There’s nothing worse than struggling to breathe! It’s scary, it’s hardwork, and drains you!

Chest X-Ray

I can barely get up the stairs. I haven’t washed my hair in a week, as I’ve got absolutely no strength or energy to do so. I have to go to the hospital on Tuesday morning for a chest X-ray. Unless I improve, Alex is going to have to shower and wash my hair for me. Which is something I never like to ask anyone to help me with! I know it’s only a trip to the hospital, but I do want to turn up clean!

Getting to the X-ray department is another story! I know they have wheelchairs to help me. Again, it’s something else I don’t like to ask for! Going to try and keep optimistic though, as it’s still another two days away. Hopefully, I will have improved a little bit by then. Even if it’s just enough to be able to walk down the corridor to the X-ray department. It’s the little things that matter right now!

Please Stay Safe

Before I head off, I want to say one thing: please stay safe! Covid is no joke! If you are vulnerable try and do whatever you can to protect yourself from catching it. Espically, if you are someone like me, who gets quite sick from just a common cold.

Somebody said to me the other day, ‘when the strain was bad, and we were unvaccinated, we had to shield because the chances of it killing us were high. Now we are vaccinated and the strain is milder, but it doesn’t mean we will be ok. It just means our chances of dying have been reduced, but the suffering is still the same!’ This is so true! The severity of it has been reduced, but the ride to recovery is still difficult.

I was naive to think I was going to get an easy ride with covid! I’m just grateful I have caught what is classed as a ‘Covid cold’ and not the strain that was out there 2 years ago, at the start of the pandemic. Also that fact I have had 6 vaccines! I may not feel the benefits of them, but it could be them that’s keeping me out of the hospital, off the oxygen!

I’m not writing this to scare you or anyone. I’m just hear to make you aware! If you are someone like me, who gets very ill with a common cold, please be careful! If you are are eligible for anti-viral treatment, make sure you get it before it’s too late! Maybe, if I got mine on time I wouldn’t be in this state now. Who knows?!

Taking One Day At A Time

Not sure what next week is going to bring. All I can do, is take one day at a time! I just can’t wait till the day I can breathe without feeling suffocated, and to not feel like there’s an elephant sat on my chest 24/7 a day! I keep dreaming on a night about being in the van, in the mountains, feeling free, feeling well, being happy. I know I will get there! Mentally, and physically, it’s just hard at the minute. This is not how I wanted to start 2023!

I found a great audio message on Instragram, which I want to use on a reel. The message that couldn’t be more true:

‘Everything is super important until you are sick then you realise there was only ever one thing that was important, your health!’

Author unkown

Emma

xox

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