When I was thinking about a title for my post, all I could think of were words that were not appropriate and since my mom reads my blog, I decided against it. So I decided to let all of you use your imagination. Pain is as real as it gets. If I don’t actually say to someone I am in pain, my body does it for me. When I am unable to walk, sit or stand without crying I am in significant pain. I feel vulnerable when I am in pain and if I lived in a perfect world, it would be my best kept secret. On days like today, vulneralbility be damned because my feelings and emotions are all over the place. I want to have a pity party and be sad, but part of me is just so angry. I feel like knocking down every door and wall in sight because I feel like no one understands or is even trying to understand what it is like to have Hidradinitus. It is a condition that will test you in each and every area of your life. It’s not like a headache that comes and goes. HS comes, sets up shop and builds an entire community.
Today I feel defeated. HS won the battle. I wasted time I will never get back trying to explain to people who sit behind a desk, identify me by a number and have no clue or care about me or my life, how much pain I am in on a day to day basis. It was like trying to explain the smell of an eyeball. I have to admit, there are days I want to take pictures of all of the areas of my body that are and have been touched by HS and send it to people like them. I know I have said before I would not wish HS on my worst enemy, but today is not that day. I don’t think the “powers that be” will completly understand HS unless they or someone they love all of a sudden have this awful condition.
HS is sometimes considered an invisible illness because not all the cysts and scars are visible when we are fully dressed. I feel like I have to convince people I am sick because I don’t look sick. I didn’t ask for this and I don’t want it. Today I am not as strong as I would like to be. Today is a day I wished my dad was still alive so he can defend me to the bad guys. Today is a day I wish I lived with my mom so I could crawl in her bed and cry while she tells me I am going to be fine. Oh well, today is over and I will live to fight another day tomorrow. I am going to bed and pull the covers over my head!
How many of us wear an invisible veil each day? So many of us are afraid to show others how fragile or vulnerable we are from day to day. We have to keep this stoic facade in fear of being judged in some way or another. I will be the first person to raise my hand, especially with the last few days I have had with HS. Honestly, it feels like HS has had me in the a chokehold. I have always took pride in myself for being an open book, what you see is what you get. This belief took a shift when Hidradenitis Supprotiva has tried to take over my life. Of course my family, closest friends and fellow comrades who have HS understand, but what about everyone else? What about the people I meet when I am at the bookstore? What about the people I see as I am walking Gambino? What about the people I work with? What if they saw my “cracks”?
In one of my previous posts, I wrote about one of my cysts I called Bertha because she was a beast. I am glad to say, she finally burst. Just as I was about to get ready to do my happy dance, HS said “hold my beer!” She did not leave without leaving her mark on me to let me know she came, she saw and she attempted to conquer. There is a painful hole where she used to be. To keep the hole company, I am having not only new cysts, but everything is flared up. I honestly think all of this was triggered by stress. The not so funny thing is I was stressed about Bertha and not being able to walk. HS is a constant stress circle. As I limped into my physician’s office this morning, I passed a young lady who stopped me to tell me she really liked my hair. I smiled at her and with what little energy I had said “thank you.” I continued to limp into the office, I couldn’t help but to think what if she knew it took me 2 hours to shower and get dressed? ( I hope I remembered to put on deodorant) What if she knew each step I am trying to take is shooting severe pains all over my body? What if she knew about all of the cysts and flares that were having their own party on and inside of my body? What if she actually saw what HS looked like?
After spending all day in severe pain, I have had time to think about my cracks. I really did not have a choice because it hurts to sit and it hurts to stand. I was forced to lift my veil and be honest about how I really felt. Most of the time I am happy go lucky, but not everyday. I hurt. I cry. I have pity parties. I get scared. I need help. We don’t take off our veil because we don’t want others to see our truths. If something happens and our truths are seen by others, they sometimes blame us for being so stoic and not saying anything about it. Some may even blame you for being truthful because it causes them to reflect on their lives and their truths. We all know, life is short. Spend the rest of your days walking in your truth. If your veil just so happens to blow off or if you decide to take it off, hold your head up high and make no apologies for being human.
“There is a crack in everything.
That’s how the light gets in.”
― Leonard Cohen
I thought I had trained myself not to be allergic to Mondays. For as long as I can remember all I have ever said was “I hate Mondays!” Yes I know, I sounded like a kid who didn’t want to get up to go to school. The adult in me insisted I not give a day of the week that much power. Well I was reminded today on why Monday is not my friend.
Take out the trash, drop clothes at the cleaner, find someone to donate the backpacks to, run by the bank and return all the phone calls I received today were all of the things I wanted to get done today. Have a lie down and binge watch Doc Martin is what I actually wanted to do. I decided to take my sidekick Gambino with me to help. Unfortunately this meant I had to put on a bra. I didn’t want to slang and bang all over the place. I put on my beautiful blue tank and started on my journey. As we were going to the cleaners I felt the air blowing on my arm and I realized I had not bandaged my arm before I left. Panic consumed me. I even thought about turning around in 5 o’clock Atlanta traffic to go back home. I knew if I turned around I would not have ventured back out. I decided to keep going and I could hold the clothes with one arm and Gambino in the other so that no one would see it. I looked like a struggling clown trying to juggle an elephant. I basically threw the clothes on the counter and embraced Gambino like he was my shirt. The cashier wanted to play with him, I said we were in a hurry. I did not want her to get too close, nor did I want to put him down. I did not want anyone to see how HS has taken over my left underarm. It’s dark, full of scars and is also active with cysts. What if she asks me what happened? How would I explain? What if she has a look of judgement on her face and then I go the hell off because I am embarrassed? Too much to think about and too much to deal with on a Monday. We made our narrow escape.
I have been thinking about the cleaner caper all evening. About all of the anxiety and shame I had around someone seeing my arm. It really felt good to wear a tank top like a normal person and enjoy the breeze on your arm. I wasn’t able to enjoy it. I was in my own way. Who told me to be ashamed? Who said it was ugly? Who said if someone sees it they will judge me? Moreover, why would I care? It’s the negative self talk we impose on ourselves spilling over into our world making us think that everyone else feels the same way. Not only is it not true, but it’s not fair to us or the people we interact with. Tomorrow is a new day and I am going to try again.
Shame is the most powerful, mater emotion. It’s the fear that we’re not good enough-Brene Brown
This is the post excerpt.
Woosa….. I have to take a breath. So much pressure surrounding my very first post. Well, here goes… hey ya’ll! Yes I am an Alabama native and it definitely shows. I started this blog with not only myself in mind, but with all of us who have an illness that is not always visible to the naked eye. I mean sure I can just lift up my left arm and play connect the dots with my cysts and scars, but I don’t go around pit flashing people! I have Hidradenitis Supprotiva. It’s a mouthful, so HS for short is perfectly fine. It is very painful and can be very debilitating. With all of the pain, bandages, inability to wear white clothing or plan an outing on any given day, this can also cause even the strongest person to be sad. That’s why I decided to start this blog to not only bring awareness to HS and other chronic illnesses, but to provide motivation, laughter and therapeutic approach to living life. I want to get to know my readers and share in our journey. I will share information about HS and mental health as well as some of the anecdotes and quotes that keep me going. As you know there are days when I say NOPE and pull the covers over my head and I plan on sharing those moments too. I am looking forward to getting to know and hearing from my readers. Let’s do this…. (together with some assistance because I can barely walk today!)