No! No! No!
Two weeks ago I clicked publish on my newest blog "Yes! Yes! Yes!" which served as my own internal pep talk and reminder to keep saying "yes" when I was able to and not worry that my more outward living was negatively impacting me. I felt hopeful and more confident by the end of writing this blog that this could even be a year of saying "yes" more. Oh the irony that a mere 10 hours later the first covid positive test appeared in our home. It felt like the universe had read my blog post and said - " actually NO! NO! NO! that is indeed not the plan!"
It has currently been just shy of 3 weeks since I tested positive. And like the last time this has been a brutal virus to contend with. Of course all the usual things presented that do when you have covid, the sore throat, body aches, chills, plugged head and cough. Those are the symptoms I expected. My mast cells were however angry having to yet again fight this virus and so they brought along their own reactions and symptoms like major flushing, hours with swollen and red hot face, increased heart rate and dizziness. That's the one two punch- covid and mast cell activation. That is why it took me 6 weeks to get back to my baseline the last time.
The first few days when I felt the worst are a blur but I have gotten through the virus and my body fought admirably. I tested negative 7 days after my positive test and most people I know think I would be back to normal by now but that is not the case. I have been left with a very worn and beaten down shell of my body to heal and put back together.
It has now been weeks of resting and sleeping, of reactions and never quite knowing what will come next. I have given in to pacing myself and accepting I will not feel good for a few more weeks. I wake up knowing I will be dizzy and tired and float through most of my days. And yet each day I hope I am gaining a little more energy and manage a little more than the day before. I know this walk - I have done it before - all I can do is give my body time and rest to heal. I am not currently able to say yes to many things and in fact have had to say no to most. I also had to cancel things like my California trip. This has been hard to swallow but I just hope in time I will, like I did last time, find my baseline again.
My rare diseases are always invisible. Aside from occasional side effects from steroid use there is rarely any sign that I live with my diseases. I have long come to terms with this and am blessed to have a huge support network that understands my daily struggles without having to see them. These last few weeks though have made me feel even more invisible. I am sure it is because people are always surprised to learn I am still not 100 percent better. But I am also sure it is because I feel so stuck inside my house knowing I am not quite ready to do most things. On Saturday I was out of my house for a few hours -the longest since I was sick and I required a nap after and hours of resting. It has felt isolating and lonely having to say “no” more right now. And it has reminded me how precious the good days are because life can change quickly and how easily a backward slide is.
With Fall well underway now it is hard to not feel like I have missed a chunk of it but I am grateful to have many things to still look forward to in the coming months, special family visits, many birthday celebrations and thankfully cooler temps. Knowing these happier moments await certainly make these harder days easier and I will be endlessly grateful for when I can stop saying “no”. For now, I will just try to listen to my body, rest when I need to, and take each day at a time as I fight for my “yes days” to return.
