One Foot In Front Of The Other, With Blinders On……….

There is no perfect time to write. If I waited until I felt 100% then I would never have started this blog. Today has been a most trying day. Now I know thinking I am in control of anything is an illusion, but I really thought I had a handle on my HS for today. I was so prepared. I went to bed early last night  at a normal time, got up early and I even made breakfast. Yes, I was going to make this day submit.  As soon as I started my errands this overwhelming feeling of lethargy came over me. The yawning began and the thoughts of my king size bed began to dance around in my mind. All of a sudden, it seemed as if the abundant amount of Atlanta traffic had tripled. Everyone driving was on their cell phone, not paying attention to the lights. Motorists were blowing at other cars and pedestrians. That’s it! I was determined to go back home. I could not figure out for the life of me, why I was so sleepy. Then I realized chronic fatigue is just one of the many, many symptoms of having Hidradenitis. There are days I can try to forget HS, but it is always there to remind me. If not with painful cysts and boils, with lethargy, headaches, nausea and sadness. I was determined to get at least one thing done off my list. First on the list was to get gas. I found the nearest gas station and completed the task. After that, I made a B line back to the house.

It felt like I was all dressed up with nowhere to go, except I couldn’t go anywhere. I did not have the energy or the strength.  Might I add, I was looking very cute. I actually got dressed and put on my nice clothes. When I am in my Hello Kitty pajamas and a bonnet, it seems like I have the strength of a thousand men and I see each and every one of them when I walk my dog Gambino. Honestly, I don’t have an in between style. I am either really cute or I look like I just woke up. (definitely not like Beyoncé) Now my mind was riddled with anxiety about not getting my list done and other things I thought I had put completely out of my mind. Things like waiting on the results of my CT scan and if I should start this whole meal prep thing. Wondering if I should watch the health movie on Netflix that everyone is talking about because they insist on telling me about how everything including the sun is bad. How am I going to meal prep when everything is bad?  Forget meal prep, how and where am I going to go to get whatever it is I am going to buy? That’s when I decided to take a nap and hit the reset button. When I finally awoke, hours had gone by. Still no groceries and nothing else checked off of my list. I looked around and all I saw was my puppy Gambino, who also had just woke from a long nap. He was so happy I was home with him. I looked at the list and then I looked at him, back to the list and then him. I decided I would take Gambino for a walk and discuss everything with him. We walked and even stopped and smelled some flowers. Then I realized I would finish my list the way I was walking Gambino, one step at a time. I would not allow anything else to get in the way to cause anxiety or the feeling of defeat. If that meant I had to imagine myself with horse blinders on then that’s what I would do. I was able to check a couple more things off my list and decided to try again tomorrow.

Coming From All Directions

I made it. I survived my dad’s birthday without completely falling apart.  Of course there were tears, but I can honestly say happy tears. As I sat in pain all day because the cyst on my abdomen had ruptured, I smiled and thought about the pain my dad was in with renal failure. I sucked it up as best I could and continued with my day. I planned on it being a great day with nothing but happy thoughts and memories. It was a good idea at least. I ended up watching the news and felt my heart breaking all over again. Hurricane Harvey has literally destroyed the lives of so many people. I watched as families lost everything they owned and still managed to be thankful just for being alive. I wanted to do something to help so I decided to donate. As I was walking to the room to get my wallet, a sharp pain from my abdomen took me to my knees and I was literally helpless. The cyst had torn and gotten worse. I looked down and felt so defeated.

I sat on the floor for an hour after I went to what I call my medical bag and cleaned the wound. That was my day, gone. I did not feel like bandaging up and going out. I am sick of wearing tights and t-shirts because to those who don’t understand Hidradenitis it looks like you are just being lazy and not wanting to dress up.  The more and more I thought about how HS just changed my plans, the more and more angry I became. Then my puppy came in and sat beside me looking as if he was saying, “Ok Momma what  is plan B, I am here to help.” A tear dropped and I told him we needed to get the wallet to donate to those affected by the hurricane. It was not about me or my pain, but about helping someone else. The pain is always going to be here until a cure is found. I can’t wait to be kind until I feel great because I would never be. I looked around to see what I could hold on for balance as I got up.  I grabbed my chair and rose to my feet. Every step I made towards my bag felt like a gang of people doing the electric slide on my stomach as I lay on the floor cheering them on. Finally I got to the wallet and donated in the name of my father. He was so kind and never focused on his pain. Neither would I.

I was able to make it to my recliner once I finished with my computer. The recliner was my bed and Gambino slept in his tent after fighting sleep like an infant. I was not able to make it back to the bedroom. It was too far. I stayed in the chair until morning. I will get up and try again.