Impatiently Waiting

Since quarantine began I have anticipated when life would open up. I knew this would be the hard part for me. During the last 3 months -for the first time in a decade, the world lived like me. My friends and family wore masks and gloves while out, they ordered their foods in bulk and learned what it felt like to miss out on their carefully laid plans. My colleagues suddenly realized it is possible to work from home and we all learned the power of zooming.

I remember early on realizing what comfort I felt to suddenly not feel alone in my reality.  Of course wishing this would not be true for any of us but grateful to be in this together.

Now as life starts opening up, as more restrictions are lifted, I realize I will soon be left behind as the world begins to return to a slightly more normal state-  except my reality remains unchanged. My rare disease life didn’t suddenly get cured in the three months of quarantining, it seems, it may In fact have gotten smaller.  Unfortunately, the world now feels even more dangerous as strong chemicals and cleaning products are being used - a major trigger to my mast cells. These products alone may be worse than COVID-19 for me.

It’s hard to know how to move forward - or in truth what forward even looks and feels like.  As much as I would like to pretend my diseases won’t define our entry they already have. I am once again a hostage within my own body unable to get out. I know we’ll miss out on many things that others may feel ready to do but I must carefully weigh every movement and activity.

I feel a combination of anger and frustration as if I have to once again be reminded of my limitations and to know that my re-entry will be much further down the road. I worry my isolation will be much worse than when this began - I suppose it’s impossible for it not to be. Accepting that the world isn’t safe for me - that everyday outings will trigger me and that my years of effort to take part in society no longer matter. It feels like I am back at the beginning of my diagnosis - grieving the losses related to my diseases all over again.

So for now I am trying to live day to day - moment to moment- and to trust that I will find my new normal within our new world just as I always have.  And yes, I am even in small ways trying to find things to look forward to - as challenging as that may be. I know my fears of being left behind and forgotten may be unfounded but perhaps unavoidable to have them.   I try to remind myself  that through my entire rare disease battle I have always been blessed with an amazing and supportive community of family and friends that have carried me through the hardest times and I trust that they will again.

I must however remind everyone entering the world to not forget about those of us still in our bubbles. That your actions outside - wearing masks, washing hands, staying socially distant and following the guidelines will allow those of us still waiting to come out sooner.

Until then, I will continue to remind myself that for now, as hard as it may seem, I am exactly where I need to be-bubble and all.