10,000 Steps Forward...
The first few days I had the worst headache and what felt like a burning nose and a slight cough. No persistent temperature though I did keep going hot and cold, and no dry cough either. So I thought, ok this isn't so bad, let's hope it stays this way. I carried on with my 10,000 steps a day, doing the housework, YouTube workouts, walking on the spot, up and down the stairs and dancing with the boys. You name it, I did it, Ha! Until about the fourth day, when I felt like a bus hit me. Everything ached, and I had zero energy to do anything. For the whole of that morning I lay on the sofa and slept. I even slept through the noise of two toddlers, yeah, it must have been bad! I managed to perk up around lunch time so that’s when I got a move on and got those last steps in. That day I did TWO YouTube workouts...
For me, that day was the worse. It was a bit of everything all rolled into one and it wiped me out. Sleeping it off helped (but that truly was the only day I napped!). Then I remember having some salt and vinegar Pringles that seemed so sour they actually stung my mouth. For days after that I completely lost my taste and sense of smell. It was the most frustrating part of having Covid because it's so odd not to have those two senses. You forget how much you use them and how important they are to you. For the rest of those two weeks in isolation everything carried on as normal. There wasn’t a lot I could do being stuck inside so I found bits to do around the house and kept busy! All in all my experience of Covid wasn’t pleasant, but it could have been much worse. I'm thankful it only affected me mildly.
RA Takes a Back Seat
In case you were wondering, I do believe Harry and Alfie also had it. Although they weren't tested, they did show some symptoms. Mike had a lucky escape – his test was negative and he didn’t have any symptoms the whole time. Crazy eh? He lives and breathes the same air as me but didn’t catch it? Odd but again, lucky!
As for how having Covid affected my RA I find it hard to explain, but it was as though my RA took a back seat whilst I had it. I felt like my body was so set on getting over the virus that my RA didn’t affect me for the duration. It's weird because the only time I'd ever felt so little pain with RA before was when I was pregnant with Alfie.
As odd as this may sound, I felt so lucky not only to have mild symptoms, but also to get a break from the pain and struggles of RA. That's how I still kept managing to do my 10,000 steps. Of course, though, the relief didn’t last long. I knew the exact moment Covid left my body because I went from having very little RA pain to feeling like that bus had hit me again. The way our bodies work – so amazing but also damn frustrating! So, RA was back with full force and I still had a few days left of my 10,000 steps. I still wasn’t allowed back on my medication until I felt 100% free from Covid. Which is hard to gauge when your body always feels battered and bruised, but there you go.
Meds Not On Demand
A couple of days passed and I started to feel human. Well, as human as it gets for me. So, I considered starting back on my medication. But oh no, don’t be silly, that would be too easy! Instead I developed a tooth infection to delay my meds a little longer. Fantastic! So this meant a week of antibiotics and all being well I would be able to start back on my meds the following week. You couldn’t make this up. I managed to get over the tooth infection and started my medication again on time, this time.
The down side was that I could no longer take the prednisolone (steroids), which help me the most. If Covid was still in my system the steroids along with my other meds would only make it worse. This could cause further issues, which my consultant didn’t want, of course. But the methotrexate and hydroxychloroquine alone haven't been doing much for my RA. Although I was able to start using them again, there didn't seem much point. Not having steroids is always my biggest nightmare because I know how I'm going to suffer without them.
After a few very uncomfortable days juggling home life, work life and everything in-between, I called my nurses and consultant. I told them I couldn't physically continue to suffer like this. Although I wasn’t allowed the steroids, they planned for me to start the biologic therapy (Simponi) as soon as possible. This needed a few more tests, so I booked in for them. As soon as they came back clear I would be given a date to start.
Bad To Worse and Back Again
Well, the following few days things spiralled out of control. I had to have somebody with me every morning to help me make breakfast or get juice for the boys. I needed help just getting them changed – basically I needed support all day. I had their childminder pick them up rather than me taking them to her because it was impossible for me to do it. I couldn’t bear my own weight and it felt like I'd gone from one extreme to another. It also felt like things had never been this bad before.
I got a call from one of the nurses in my care team to ask how I was getting on. She updated me on tests etc. By this time I was desperate. I argued it was impossible for me to be a mother like this. I couldn’t even wash myself how was I expected to look after two toddlers? Having to rely on someone else at all times is not how I want to live my life.
I do admit I got frustrated and upset on the phone, but she was very sympathetic. She said she appreciated the amount of pain I was in and understood my situation with the boys. She promised she would speak to my consultant and then call me back. The upshot was, they agreed to let me have the steroids again but ONLY until I was settled on the biologic therapy. Wow, what a relief. But also a huge worry, because this meant that starting the new meds – my biggest fear – was now imminent. No way was I ready!