Living with indolent systemic mastocytosis (ISM) as a young adult with small children had challenges, but I did what was necessary as my children grew up to give them the best life. Some days were harder than others, but I had a reason to get up and do everything I could for them. I loved my children. I love my children now just as much, even though they are grown with families of their own.
Now that I am a 56-year-old living with ISM and no one that depends on me, finding that fight feels harder. I am trying so hard not to become a recluse in my own home.
Convenience in my comfort zone
I do not wish to live like this, but I have no desire to leave my home. It is becoming too easy to stay in. I can get groceries delivered to my back door. I can order anything off Amazon. I can even get my prescriptions delivered. Life is too convenient for me to want to leave.
It seems the beginning of this was when COVID became a thing. Life as we knew it changed right then, and its lasting effects have changed the way we are able to live. It is so effortless just to remain in my home that it takes resolve to leave my house now.
It seems it is just when it strictly involves me that I am perfectly fine staying right here. I have no problems going to doctors’ appointments, even when I need to travel to Utah from my home in Louisiana. When I get invited to see the grandchildren involved with something or to a party, I have zero problem attending.
This is not good for my mental health.
I am sure I am not the only patient living with a rare disease that fights this daily. The oddest part of all this is the fact that if a suitcase and plane are involved, I will beat you to the airport. I still love to travel. Just let me grab my passport and I am off. At this moment I am planning to fly to Rome the latter part of May to cruise the Mediterranean as part of a biblical exploration of the New Testament with the author and professor Kristi McClelland. I’m even planning to arrive ahead of the cruise to spend a couple of days exploring Rome.
I am also planning a trip to Washington, D.C., to attend Rare Disease Week at Capitol Hill in February. I am filled with anticipation and excitement as I prepare for these trips next year.
Just don’t ask me to get in my car and run down to the Dollar General and pick up anything — my husband can attest to that. He will stop on his way home from work, or we will do without unless I can get it delivered from Walmart.
Is this just me? Am I the only one? It is just so hard to want to go anywhere and deal with obstacles.
Staying where I feel safe
If I try to go into our only local store that everyone knows and every corner in America has, I must walk through cigarette smoke to get inside. Well, that is a big NO for me. Smells are one of my biggest triggers.
I tried to have an enjoyable time at the local fair a couple of weeks ago with the grandchildren. We were sitting at a picnic table in the middle of the fairway by all the food stands. I was eating a funnel cake and the kids were visiting. Suddenly, the smell of someone smoking marijuana (a trigger for me) was so strong we all had to jump up from the table and move. Cops were all over the place, and we had to be subjected to that with our small kids and babies with us. That was it for me, and I had to return to the house.
I feel safe here at home. I am in control of my environment. I truly wish I could go back in time to when my babies needed me and I felt like I had fight left in me. I miss those days.
Sign up here to get the latest news, perspectives, and information about SM sent directly to your inbox. Registration is free and only takes a minute.
