Monday, February 27, 2012

The Magical Grab Bag of Behcet's

At first I didn’t understand how the people with Behcet’s could think about it daily. Why let it control you? They are constantly thinking about their symptoms and how it controls their lives. After almost a year of being sick I finally get it.

My symptoms have worsened and it’s all I think about. Why? It’s actually pretty simple: I can’t go somewhere without thinking how it’s going to affect me. I don’t know if I will make it though my sister’s baby shower or a family Christmas get-together, or if I can even make it there in the first place. It consumes you. Even if you don’t want it to. You can fight it but it will only make you worse off in the long run.

You see, at first I was stubborn and thought I can still do everything I use to but in moderation. It’s not that easy. You never know how you are going to feel on any given day, even if you start out feeling good, you can go downhill quickly. It’s like the weather, sunny one moment and stormy the next.

Then comes the denial. The time when you try to act normal even if you don’t feel good hoping to outsmart it. What a crushing blow this was. Even putting on a happy face doesn’t matter because it’s always there. Every corner I turn, it’s rearing its ugly head waiting for me. Waiting to either pounce a new symptom on me or worsen an existing symptom. I try to ignore the fact I can’t make plans because I never know how I’m going to feel but reality sets in after a while and you just feel hopeless.

What I wouldn’t give to feel normal again, to be able to do things, to look towards the future.  See it’s just not that simple with Behcet’s. But that’s because it’s a complex, unknown disease.  And that’s how you have to treat your life- every day is unknown. Your life becomes a complex problem that you try to solve but no matter how hard you try, you will fail. This is because you don’t know if the medications you’re taking are going to keep working, or if you’re going to need to add a new one, or if they will even work in the first place. With Behcet’s, you have to take it one day at a time. Sure you can dream about the future. It doesn’t stop me of one day hoping for a cure. Or having a remission of symptoms.  I’d take either one.

I’ve read the spoon theory before and think it’s a great theory and a good start but it doesn’t quite describe what living with Behcet’s is like, but it was also meant to describe lupus. It got me thinking how do you describe it to someone? Is it even possible? This is how my theory evolved.

Living with Behcet’s is like reaching into a grab bag every day and pulling out a handful of symptoms.  But it’s not just a regular grab bag; it’s a magical grab bag. It’s a magical grab bag because some days you may only have a couple symptoms and other days you have too many to count. Then the day comes when you pull out the magical piece of paper that has a new symptom on it.

The funny thing about this disease, and I’m being sarcastic, is even when you think you have a hold of the disease your symptoms can change. They can change at any given day or time. Even if you pull out a magical piece of paper saying you will have three symptoms on a day, like fatigue, joint pain, and mouth ulcers, you could start to develop others as the day goes on. You may have pulled out a piece of paper from that grab bag that says “I’ve decided to give you pain like a semi-truck has hit you at noon” or “I’ve decided to give you a headache around 2 PM and a genital ulcer at 5PM”. You never know when another symptom is going to pop up. This is why I call it the magical grab bag. The other thing about this grab bag is it isn’t coated with a magical fairy dust that makes your symptoms go away.

The worst part about this disease is you may start feeling good, having a day of minimal symptoms, which is very rare but not unheard of. I’ve learned to never take this for granted and go overboard with doing normal things because at any given moment that feeling good will end and I’ll be knocked right back on my butt but usually fifty times worse than I was feeling before. I like to call this the tornado effect. It’s the calm before the storm.  It wreaks havoc on your body once it hits. Usually when it’s this bad, there’s not a damn thing you can do about it.  No amount of pain medication or changing positions will help. This is the point where most of us cry. Sometimes the cries are from frustration from the medications not working, other times it’s from the pain itself, and other times it’s from knowing there’s nothing you can do but wait it out.

Even though you are reading this, you will never fully understand what living with Behcet’s is like. Something as simple as cleaning the toilet is a blessing most days. If I can do that, I feel a sense of accomplishment. Then there are the days if I can make it to the bathroom without crawling, that’s a blessing. Every day is just one magical bag of symptoms, you never know what you’re going to get for the day.

19 comments:

  1. Thank you Chrissy. I have behcet's too and I like how accurately you describe the indescribable.

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  2. Chrissy: As a Behcet's Patient myself I completely understand the Magical Bag of Symptoms and the Tornado effect Behcet's can have on you.

    I thank you for posting this. I hope you don't mind me sharing this with my Behcet's family and friends on facebook.

    Take Care
    Tracey

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  3. Great descriptions Chrissy! I agree with the "magical grab bag" comparison...we never know what's coming our way, that is for sure. Thank you for taking the time to write this, and for doing so in such a unique way.

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  4. I have behcet's and this says it all perfectly, it is as though it was taken right out of my mouth. Thanks for sharing.

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  5. I have Behcet's as well, and it's the best description I've ever come across. There are clinical explanations about symptoms...but never have I seen a better description of what it is truly like to live with this each and every day. Thank you.
    Stephanie J

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  6. I have Behcet's as well and I must say this describes everything. While reading it, it actually made me want to cry because there is no other way to described what this disease is about. Thank you

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  7. Keep writing about your struggles, thoughts, passions and everything that touches you about this disease. You have a wonderful gift of sharing through struggle that is sorely needed. Please visit my website sometime and feel free to befriend me on facebook. www.andybarwick.com, Facebook: @awbarwick & @andybarwick, twitter @andybarwick, email: awbarwick@gmail.com

    Keep your chin up!
    Andy Barwick

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  8. Hi, You are so familiar. I thought the same thing when first reading about the disease. Man, Im not gonna be a whiny baby about it! Well I can humbly say I with all my might and all my faith cannot fight off how this thing has consumed me and my thoughts. You cant just act like its not there. You cant just fool it by being positive. Its not just a mind over matter type thing. It really is grab bag. ANYTHING can happen. feelin half way normal and BAM out of nowhere....arthritis? or ulcers or enlarged organs or blurry vision or heart problems that resemble a stroke or maybe nothing. wow wouldnt nothing be nice?! Or what if the meds side effects start kickin in or or or or or or or. ?????? I know how you feel and thanks for takin the time to just express your feelings. In my experience with this bd junk I have realized that verbally expressing how I feel about it is the most relief I can have. God bless you!

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  9. Found your link on the Behcet's site and followed it over. I have just recently been diagnosed but man are your descriptions spot on. I feel like my body is going crazy and since it's so intangible my family members nor boss get it. It's a lonely feeling. I've even had my boss describe it as "my weirdo disease". This infuriates me. The only place to pull support seems to be from the internet. Thanks for your words!
    Lisa

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  10. Chrissy, thanks for the description of symptoms... It's crazy that I feel like I'm doing well on a particular day, then whoosh.... In comes a symptom at 2a or 2p, any time of the day

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  11. Hi Chrissy -- You really hit the nail on the head. Excellent description! Would you mind if I shared your post on my "Essential Behcet's" blog? (www.essentialbehcets.com). Let me know -- thanks. Joanne Zeis

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  12. I have had Behcet's for more than 23+ years and I am really tired......of all of it. I live in hell every day. There were many years before the internet and social media where there was absolutely no support or way to communicate with other people with this same rare disease. It does help to hear other stories and know there are others like me. Thank you all for sharing your stories!! I don't feel so alone any more!!

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  13. Hi, it was great to read your story. I have had Behcet's for over 23+ yrs now and it never has gotten easier- it is harder every day. I am so sick of it all. Before the internet and social media there was really no easy way to find or communicate with other people with BD. It is really helpful to read other stories and finally have some support. Thanks to all for sharing your stories!!! Julie

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  14. Thank you for sharing and explaining in words that have often failed me, the magical grab bag and tornado effect. Hugs Behcets Warrior x

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  15. Theres nothing perfect about us, but this description is! Thanks for sharing.

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  16. I to have behcets and find it so hard to tell people how it feels . This is spot on as if you were tslking about me. Thankyou for sharing i am sure it will be shared by many.

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  17. I know this is no physical relief.. But have you thought about the meaning of this disease? Something tells me diseases have a significance in every patient's life. So what can Behcet's mean in yours?

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