I got 32 shots of Botox injections throughout my head/scalp and neck for my chronic migraines. The actual procedure went well, but I am extremely fatigued and sore. It’s almost like I got a rebound headache from it. What do you do to treat migraines? I’ve tried everything in the world. Botox seems to help for the most part and has given me some of my life back. It does stop working a few weeks before I am due for my next round, but it’s been so worth it.
Here’s my sleepy face selfie for your viewing pleasure. The second photo is a quote I thought was inspirational. We could all use some inspiration on this Monday evening.
I’m keeping this blog short because the brain fog is coming on. Hope everyone is doing well.
Today is May 20, 2018. It is Behçet’s disease awareness day! Behçet’s disease is an autoimmune, inflammatory disease that affects the blood vessels and anything they come in contact with. This illness is called a “disease” but is not contagious nor is there a cure. It is very debilitating. The immune system attacks itself and I get ill very quickly and takes me longer to get well than the average heathy person. Behçet’s disease, BD for short, affects the eyes, joints, skin, as well as quality of life. Because of bd, I was diagnosed with chronic daily migraines, which I had been living with for years before I was diagnosed with bd. Uveitis (inflammation of the eye) if left untreated, or if severe, can lead to blindness. I have arthritis that is a daily struggle to move when first getting up in the morning or when I have done too much. This disease also includes debilitating chronic fatigue. I am tired 98% of the time. Even if I’m out enjoying myself, a lot of the time I’d rather be at home resting. Behçet’s disease is a hell of an illness. It takes so much out of me daily but has made me into in a stronger person. It has been ten years of tears, questioning God, and the unknown of what will be my future. There is no cure and research is limited because the disease is rare and not many people know of it or understand it. It has been extremely hard and difficult to come to terms with having a chronic illness but I have always tried to make the best of it. It has made my relationship with God so important to me. the last photo was taken on vacation after a very hard day filled with migraines, anxiety, and joint pain. It took so much out of me to just show up to dinner. Behçet’s disease is a complex illness and we deserve more awareness, treatment options, and a cure.
Yesterday, after my week of final exams, working, and looking at houses for rent, I was completely exhausted. I had a migraine from hell that would not leave me. My joints were aching. I was in bed and miserable for the majority of the day. But I was also excited because we were driving to Tulsa, OK to see Justin Timberlake perform. How do you balance chronic fatigue/chronic pain with your busy social life? I had to make adjustments. My mom was sweet enough to style my makeup and hair so I didn’t have to waste energy doing it, and I cat-napped on the way there. I didn’t even feel like indulging in alcohol -(I have to REALLY be in the mood to need a drink because the consequences outweigh the benefits for me) – and for the fact that the concession by our seats had run out of beer just allowed me to continue sipping on water. When we CLIMBED up to our seats, finally and sat down, I was tired but exhilarated to see JT perform. My body was in pain from the trek around to our seating area and up, up, up to our seats. It was well-worth it. Justin was so phemonemial and entertaining! It was an awesome show.
I tried to enjoy the show as much as possible even though I honestly wasn’t feeling well and could’ve easily spent the evening in bed. I ignored my joints being tired and loved watching JT. It was something I will never forget. It is also something I’m paying for today, as too much activity leaves me drained in the following days. We didn’t get home until almost three am (I slept the whole way home, no surprise there!) and didn’t get out of my bed until almost 2:30pm. Having a meaningful life full of experiences when you are chronically ill means sometimes, you just gotta suck it up and pay for it later, which I’m definitely doing today. I really have to prioritize what my body can and can’t handle on a daily basis, which can fluantate from day to day. I was out with friends one evening? Doesn’t mean I can go out the next time. It makes me feel awful having to put my health above my friends and family, but sometimes it is much needed.
Spoonies: How do you recharge after you spend time out having fun?