This summer I had someone ask me the most thoughtful question I have encountered with this illness, "What does it feel like." That question felt similar to when someone asks you what is you favorite book or movie and your mind just goes blank. The question has stayed with me all summer and I still don't have adequate words to describe what it feels like to live with CFS/ME. The first word that comes to mind is disbelief. Doubt is a powerful thought and when initially misdiagnosed or told with absolute certainty that you are not ill because you look well and the basic blood panels are normal it is a crippling feeling. Thankfully for the internet all of us sequestered by this illness have found a platform and you begin reading story after story after story and you can't believe you are not alone. However, there is not a morning I have woken up and still felt lingering doubt, how is this possible?
What it feels like is the opposite of well. When you are well and get an acute illness you fight through have your highs and lows and come back out on the other side. Normal becomes sick and you fight through every day to cope with the most basic of tasks and then out of the blue sometimes you are blessed with a day where you feel normal. You are not consciously planning out and bargaining with every moment of the day, things flow without constant thought process or internal dialogue cheering you on, and then poof that disappears and you are right back where you started. It feels like you are the salmon and life is a constant battle of swimming upstream. Beaten and thrown around and just when you are getting there a Brown Bear is waiting to grab you and you hope you can win.
Lonely, it feels tremendously lonely. It has hard for friends and family because the way you use to spend time together and do things together have completely been altered. Despite your best efforts you feel like you are constantly disappointing someone, and the pressure to be well despite it being a chronic illness that right now besides no cure has no understanding of cause is draining. I get alternative treatments and feel that people are all anxiously awaiting as I am this whole thing to be gone, but that is not how it works. I am blessed not to be bedridden for months at a time. I am blessed that I can still drive when I'm up for it. I am blessed that I have good days, for many many this is not the case. So are my treatments working short answer - Yes. Are they a cure, short answer No. I have a complicated neuro-endocrine-immune disorder that currently has no cure, so if I am out of the house and upright…that is progress.
A list of my "medical" issues is long and boring and ever changing. The most debilitating would be that I haven't eaten at a restaurant in 2 years d/t/ food allergies that range from carrots, potatoes, celery, peas, avocados, most fruits, legumes…..no I am not Gluten intolerant, Lactose intolerant…it appears I am food intolerant in general. What happens, my lips itch, my face itches, and the worst my lungs spasm into an asthma attack. Again DOUBT…how is this even possible. I have for the past two years eaten a rotation of the same exact things over and over and over and over. I have given up enjoying food or caring about food and one more cooking show I may toss something at the TV.
It feels surreal. It feels like a body that has completely forgotten how to be well and ill is normal and healthy is becoming a more distant and distant memory. It's disabling so the amount of help I need to get through a day is staggering. It seems to those around me that I need more help, when it really is that I am no longer living with someone that took care of all the necessities…so now it's expensive and invasive. People in and out of your home at all times, privacy something that you have come to add to the list of losses. I am so ever grateful for all the help volunteered and that we can currently afford my other full time care helpers…but it is overwhelming. I think of all the other things that money could do, college funds for my nieces and nephew, savings, security and the what if this lasts even longer…what if I can never work again…what if I don't figure out how to create a career when every day is Russian Roulette.
Grateful. Finally and the end of the day no matter how bad it has been, and this past two weeks I can officially declare rock bottom I am grateful that I am not in pain, that I am not vomiting (because it is one of my biggest phobias in life), that I am financially okay, that I have a beautiful house, that the ones I love are well, that I have a handful of friends that have stepped up and get it, and I have learned how to let go of those who haven't without bitterness or anger, that my beloved Sophie is still healthy. My list of gratitude often wins but it takes tremendous effort and discipline that is behind the scenes to get to that place that most don't understand. It takes tremendous self reflection to realize your "carpe diem" is a day where you left the house for less than an hour, or made your own breakfast or did your own laundry. I think this "Carpe Diem" attitude that acute and terminal illnesses have taken on with a frenzy is very difficult for those of us living in a chronic state of stasis…we can't rally and get out there..we Carpe Diem very differently and it is so quiet that it goes unnoticed.
And that leads me to the final stage of how it feels…it often feels we are invisible living in a limbo land with everyone waiting for us to get better. A month ago I had a full blown break down with a close friend and it was the first time in a long time I felt heard. And the short story and the end she said the most kind and loving thing to me…"We need to do better." This was the greatest gift someone could give me and my God has she done better, and all that meant was a few texts out of the blue, a phone call once a week or every other, acknowledging how small my world has gotten and how difficult that adjustment has been. So if someone reading this is wondering how you could help…it's really simple…the real life mail b/c sometimes the biggest outing of my day is heading to the mailbox, a text, and I'm not asking for anyone to ask how I'm doing…I am yearning to know how you are. Bitch about your day, your job, your annoying husband or wife. Brag about your promotion or your fabulous vacation…FaceTime me when you are out in the world…does it make me a bit sad, well of course I'm human…but at the end of the day I just want to be back in the game even if it is from the inside looking out.
I guess it feels like you have been taken out of the game, put on the sidelines and keep yelling at the coach to please put me in….and no one hears you.
A special thanks to Heidi Ike Goold for asking the question…for Renee Haley for being better than I could ever ask for it brought me tears of joy…to my parents and family which this is as hard on them as it is me…and my inner circle who know who they are and never let me down.