I don't talk about this much, but maybe the following list will help you understand what I've been dealing with lately and why I'm too exhausted to write much or socialize.
21 Things About Behcet's You May Not Know:
- The illness I live with is: Behcet's Disease
- I was diagnosed in the year: 2011
- I've had symptoms since: 2007
- The biggest adjustment I've had to make is: Working less, giving up social activities, spending my fun money on health care
- Most people assume: I'm lazy or depressed, not sick
- The hardest part about mornings are: Waking up. It's almost impossible if I do not get at least 10 hours of sleep. Also, joint pain is worse in the mornings and it takes awhile for the stiffness and swelling to decrease so I can stand up straight and walk without a limp
- The hardest part about nights are: Finding a comfortable sleeping position and dealing with the constant itching which increases at night and often awakens me. I frequently scratch so deeply that I bleed and end up with scabs all over my legs, arms, torso and shoulders
- Each day I take ___ pills and vitamins (no comments please): On an average day I take 4 prescription medications and 3 vitamins, but if I'm experiencing a flare I take an additional 2-3 prescription medications
- Regarding alternative treatment: I am very open to alternative treatment options, traditional medication has not offered me much hope or relief. I am also researching the role of diet and hope to determine if some of my symptoms can be controlled by eliminating certain foods
- Regarding work/career: This has been extremely challenging for me and my boss. I used to be so dedicated to my job, worked whatever was necessary, poured my heart and soul into it, but now I simply cannot do it. I often find it difficult to work 8 hours a day, let alone more. I am afraid it will cost me my job, which is upsetting because I have no one to help me with my finances, etc. It's just me trying to support myself, cook, clean, pay bills, and heal this broken body and soul - it's getting harder everyday
- People would be surprised to know: That although the fatigue and pain are constant, the scratching is by far the most difficult symptom to manage as are some of the more embarrassing symptoms
- The hardest thing to accept about my new reality has been: Losing life as I knew it. I can no longer travel, I socialize very little and my weekends are reserved for resting - If I don't sleep several additional hours on Saturday/Sunday I will not be able to work the next week and will likely end up fighting a virus/fever/cold.....
- Something I never thought I could do with my illness that I did was: It hasn't happened yet because this is still too new for me, but I hope to get healthy, active and fit and then travel to Europe again
- The commercials about my illness: There ARE no commercials for Bechet's, most doctors have not even heard of it, let alone the general public
- Something I really miss doing since I was diagnosed is: Enjoying a social life, working and playing hard, traveling to exotic destinations and exploring different cultures
- It was really hard to have to give up: My social life
- A new hobby I've taken up since my diagnosis is: Does sleeping count as a hobby?
- If I could have one day of feeling normal again I would: Play golf, paint my upstairs rooms, deep clean my apartment, cook dinner and dessert for friends and play with my nieces and nephews
- Want to know a secret? It really gets under my skin when people say: Call me if you need anything. Ha! You would be so annoyed if I actually took you up on that offer because the needs are endless right now
- Something that has surprised me about people's response to my illness has been: How quickly they walk away, quit calling or judge me for my inability to function like I used to. It makes me really sad
- My illness has taught me: How very weak and vulnerable I am, but although my body is weaker my faith is surprisingly stronger. Perhaps because I have no on else to lean one and no illusions of being taken care of by anyone else but my Creator!
