This post, along with the others I write, is all about positivity in the face of whatever it is in life that aims to bring you down. But, the truth is, we all have moments where life gets us down. During these moments, my Mum would tell me, “This too shall pass”. Wise words – it always does pass. It is important to let yourself feel down sometimes, and to let yourself grieve for the things you have lost.
I’ve had a few grumpy days this week. I can deal with most of the side effects of my disease and medication, but the one I really struggle with is fatigue. It is just so relentless. The immune-suppressant I am on takes a while to work (about six to twelve weeks) and I have been at the full dose now for long enough that they are starting to kick in and with it, the jelly-like weakness of deep fatigue and the swiss-cheese frustration of brain fog.
And there doesn’t seem to be anything I can do about it – there is no quick fix. I have moments of energy. I woke up this morning actually feeling alive for an hour or so but then the fatigue hit and I needed a two-hour nap just to recover from eating breakfast. I’m sat on the sofa right now, and holding my head up to type is an effort. I just want to lie down and do nothing.
I’m doing all the right things. I am exercising. I am swimming twice a week and have also started a specialist auto-immune exercise program that I am hoping is going to build strength back in my weakened muscles. I’m keeping active as I can – reading books, articles, writing blog posts. I try and leave the house most days. I’m cooking nutritious, healthy and whole foods. I’ve cut out many inflammatory foods (milk, processed food, added sugars, alcohol, caffeine) and this will all help slowly, but it just seems like I’m mid a marathon with no sight of the end.
I am a happy, positive, energetic person but this version of me is one I don’t recognize. I’m trying to stay upbeat, but some days are harder than others. I just want my old self back, but I know she is gone and a new me is emerging. One who drinks turmeric lattes and adds gelatin to her oats in the morning and worries about liver toxicity and has to wear a patient-zero face mask when the old lady on the bus is coughing up a lung. She’s all new to me, this fresh Lizzy. And she’ll be right, as we say here in Australia. I’m getting to know her – figuring her out. I want to know what her future holds though. When is she going to go back to work? Will she be able to do the same job? Will she be able to hold onto her friends, and make new ones? Will she be able to travel?
I have moments of energy. I woke up this morning actually feeling alive for an hour or so but then the fatigue hit and I needed a two-hour nap just to recover from eating breakfast.
The one constant in all of this is my wonderful partner. He has been such a rock throughout this entire thing. He hasn’t been phased by the changes to my body or my energy levels. He has made his couch a little nest for me and provided me with video games and tv shows to watch. He treats me to curry and is always available for comfort and cuddles. I don’t know what I would have done without him.
The good news is I’m not in any pain at the moment. This is a blessing as so many dermatomyositis (DM) patients have pain as their primary symptom. And so far, I haven’t had an infection, which is really the main risk right now. My creatine kinase (CK) levels are within normal range so I can rebuild the muscles that are damaged. And I am off work so I don’t have to fight all of this and manage a team or client or inbox. I have access to affordable healthcare. I have access to good quality food. These are all blessings.
This too shall pass. I guess, what gets me down, is that I don’t believe right now that this will pass. I can’t see the way out but, as the cliché goes, the way out is through. So, I’m taking it day by day. I don’t know what tomorrow will bring, but I will figure it all out as I go.
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