Today was my first day back at work since 2/17/12. Let me tell you it felt damn good to get out of the house! My title for today is a bit sarcastic because it's not that those of us with Behcet's don't want to work because we DO! It's that our symptoms are so severe and debilitating at times that it is physically impossible for us to work. Sometimes even mentally.
Let me make it easy for you to understand: If you knew I was a nurse (which I am) but was having severe joint pain in my fingers and was unable to hold my arms up that day due to fatigue and pain, would you want me giving you an injection into your arm? If you knew I had to crawl to the bathroom that day because my body was too weak to walk, would you want me trying to take care of you? Would you want me to try to drive to work? Would you want us to try to focus on helping patients when we cannot even help ourselves? When we are crying in bed due to pain? When mentally we are not capable of thinking of anything but the pain because it's so severe no matter how hard we try? Please try to picture what we go through and understand this is probably the most difficult choice for most of us to make- the decision to stop working. Sometimes it is made for us.
Still don't understand? Picture you're the one who's sick and you are at work.The days you make it to work you try to function normally. But the problem with this is you are never fully functioning since getting sick because you always have some symptoms that bother you. It could be two symptoms or it could be ten but you never know because they are constantly changing. Your possibilities are endless. Sounds like a line for winning the lottery, huh? Only it's the lottery of Behcet's symptoms. The day goes on and you are still in pain, fatigued, maybe a mouth ulcer or a genital ulcer for the day, but you're trying to make it through the day. Some days you make it, some days you have to leave early because it gets too much to take. Remember, these people see you when you are doing somewhat ok, not when you are having a full on flare up. Think about what the people around you are thinking. The people around you see you and think "she or he doesn't look sick". This makes you feel one hundred times worse. Why? Because you are already struggling with emotions of a life long illness that has no cure and there are no tests saying "you have Behcet's disease". No, you see it's all based on symptoms and ruling everything else out. Some doctors have even treated you like you are making your symptoms up. Yes, you've had several doctors think you're symptoms aren't that bad. Dr. Fazeli at University of Minnesota's first words to me were "I didn't know who was the patient because you don't look sick". Never words you want to hear from a doctor. Shame on you Dr. Fazeli. You think I'm being pessimistic and down about people. Wrong. Let me tell you what I've heard people say about people with Fibromyalgia (yes I've actually heard people say this at a clinic I worked at):
"It can't be that bad." "She's probably just faking it so she can get out of work." "Some doctors don't even believe that's a real disease." How do you think they feel about Behcet's then? Especially since they haven't heard about it until you mentioned it to them?
Still don't understand? Then honestly, may you get this horrible disease so you do understand. I have even wished this disease on doctors so they can understand what it's like and I am not that kind of person. Maybe I seem bitter but maybe you would understand better if you were in the shoes of someone dealing with Behcet's.
It has become an agonizing decision for me. Imagine being a type A person, someone who's use to being on the go, having everything perfect- a clean house, a clean car, etc. Well as clean as my car gets because I may slack on that one a bit :) And then being thrown a rare autoimmune disease that drops you on your butt where most days it's a struggle to even get out of bed.
Imagine what that does to someone who's use to being on the go...to all of a sudden be stuck in bed or house bound. To all of a sudden being happy if you can clean the toilet that week.
It's a hard pill to swallow and I thank my fellow Behcet girls for that line :) See when I first got sick I thought ok, I can handle this. I can make this work. All in moderation. Work, come home and sleep. If I do nothing else than work, I can do this. I only work 4 days a week so I will still have my 3 days off. I'll still miss a couple days here and there but I can do this. This was NOT reality. Not even close. Nobody told me the more I work, the more it would throw my body into fatigue and a flare up of symptoms. And not just small symptoms. The symptom of a semi-truck hit your body. Yes, I'm serious. Nobody told me my symptoms would worsen as time went on. Maybe they didn't know that. Nobody told me I would have to eventually quit working or at least cut back on my hours. Maybe they didn't know this as well.
I've had chronic headaches and my fingers have gotten worse pain-wise lately. For all of those wondering if I'm still working on the floor as a nurse, no worries, I'm on phones taking messages. The worst thing about phones is my fingers get painful and I have to take breaks at times. Even typing this, I've had to stop several times. I think it's about time I get that voice recognition software, huh? I have now had to cut back on my hours and applied for disability. I am so not looking forward to the fight for disability. I'm told it will take years and I will need a lawyer. It's bad enough dealing with this horrible disease. I just hope I have enough fight left in me. Those with BD will know what I'm talking about.
I leave you with my lovely quote for the night:
"To work or not to work, Behcet's is the decider."
I stopped working in 2009. Behcets decided for me, even thought I didn't know yet that is who my enemy was. I was getting worse and just fighting and fighting to stay focused because the pain just consumes you. I was working as a part time waitress,, of all things,, but I thought I could do a couple of nights a week versus my old full time job I had as a teacher, until one night I fell. The floors were wet from April weather and my limbs were weak. One slick spot on the floor and a normal body could catch them self, but not me, I feel in front of a house full of customers. The embarrassing kind of fall where you fall and try to catch yourself and then fall again. Landed on my knees and the worse part was my knee joints were so stiff I couldn't get up by myself. My body and mind were in shock and I literally was paralyzed for about 20 minutes. What a blow to my body and my ego. My co workers thought I was being dramatic and were actually pissed that I left them on the floor to wait on my tables and to pay me back took my tips for the night. I managed to crawl to my car and drive myself home that night,, and I never worked again. My body went into a terrible flare after that, one that it seems I have never recovered from. I have since tried to work as a substitute teacher. I thought having the flexibility to work "when I felt good" would be the key,, but like you said Chrissy, its a magical grab bag of symptoms. You NEVER feel good,, and the symptoms and severity can change by the day, hour or minute. For this wife and mom who like to plan everything,, there is nothing like having this illness to make you live in the moment. The hardest part is not being able to plan how your going to pay your bills,, being fully dependent on others. My husband doesn't make enough to support our household so I'm currently waiting for a hearing date for my second appeal for disability benefits. It's been three years and they say another 12-15 months for a hearing. It's not just deciding you can't work,, its like having to accept your disease on an ever deeper level. A VERY hard pill to swallow in deed!
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