About 7 years ago, I started experiencing symptoms of what doctors thought was lupus. After seeing endless specialists, I realized that the stress from not knowing what was wrong was making me feel worse than my symptoms. I stopped seeing doctors for testing shorty thereafter. A few years later, I was attacked during my birthday celebration during which I suffered punches, stomping, and kicks to my head repeatedly. I was diagnosed with a concussion and referred to a neurologist. Nervous about the impact to my career, I chose to see my PCP instead. She recommended a few weeks out of work for healing and driving safety, but didnāt anticipate long term implications. Over time, the migraines that Iād become accustomed to became more frequent and severe. When the tremors and fainting started, I knew I needed to see a neurologist. The first doctor ordered an MRI, jotted āArnold Chiari -3 MMā on a yellow sticky note and prescribed me propranolol for tremors and headaches. Told me to call her if I decided to have surgery. No need for a follow up. 
She left after saying āRememberā¦you are not a hysterical woman.ā 
The meds helped with tremors but not with my headachesā¦nor my figure for that matter. A year or so later, desperate for relief and answers, I decided to get a second opinion. The new doctor has been amazingā¦but I still feel like Iām over medicated for symptoms with no long term solutions in sight. This is the longest flare Iāve head. Iāve been in and out of bed for almost 2 weeks, missing more days of work than I can count. My employer has been extremely supportive; however, I canāt help noticing the side eyes in the office. I have a fiancĆ© and 12 year old son. While I normally feel like the princess of the household, I now feel like a nuisance. I feel like Iām annoying them by being sick. I still feel responsible for making sure they eat and keeping our home in decent shape. If I ask for help, they complyā¦but I always feel like Iām a burden. I feel guilty for making my son worry and not being the fun-loving woman my fiancĆ© met 9 years ago. Iām spending a lot of time meditating and praying. It has done wonders for my psyche. The worst part of this is feeling like no one understands. I am so happy to have found this group. I read so many posts and think āTHATās MY LIFE!!ā What a relief to be able to share with other people who actually GET IT!! I donāt claim to be a holy roller and God knows Iām not perfect, but I find my peace in Him. I hope you guys can too.
Hey Yazclass,
For a start, Welcome to Benās Friends. Brain conditions can be such fun. NOT.
When you hurt your leg it affects your leg, you may limp and itās pretty obvious you have a sore leg, but the brain is totally different. There may be no outwardly signs and It can affect EVERYTHING and some people simply donāt understand it, this includes the medical fraternity. Iāve given up on the specialists, each one has their own opinion and often discredits any other specialist opinions. If I wasnāt confused enough before seeing the medicos I sure was by the time I decided Iād had enough of them all.
I too had major stumbling blocks with ārolesā. Iām the man of the house, the provider and now I canāt. My wife is so very supportive, Iād be lost without her, but those societal norms still play a role in my own self expectations. I tried to push myself to rehabilitate and get back to ānormalā, but it wasnāt to be, all I was doing was driving myself further into the ground. For months Iād wake in the morning and apologize, eventually my wife jokingly told me to stop apologising or sheād give me something to apologise for. She could see that I wasnāt in this position by choice and having that understanding from her has meant the world to me.
Merl from Moderator Support Team
Youāre so right! It doesnāt feel like anyone understands!! I have a habit of trying to carry the world on my shoulders and feeling guilty about everythingā¦even when I havenāt done anything wrong. It is comforting to know that itās a normal sentiment. I wish I could make everyone around me understandā¦ Thanks so much for the encouraging words.
I started having symptoms about 6-8 years ago. Obviously they have all gotten progressively worse. The last year I didnāt feel like hiking, because I fall down so much causing torn ligaments and ankle surgery. I donāt like to go to the casinos, the smoke and lights make the headaches worse. I was finally diagnosed last January 9mm drop. It was to late. My husband said he wanted to find someone he could still go live a life with. (Someone not sick). We were together 14 years. He was the love of my life. Now my stepsons want nothing to do with me. They feel loyal to their father and he has already replaced me. The divorce isnāt even final yet. I also just found out my dog is dying of cancer. All I can do is thank everyday I have extra with my dog. This support group has been a life saver. I live in a state with no friends and no family. I just turned 41but my mother has to call me everyday to make sure I have taken my medicine and have not fallen and injured myself. However, I promise no bad we think we have it, someone else has it worse. Everyday I thank God for the family and dog I still have left. When I hit rock bottom it actually gave me some perspective. I have become more great full even though I have less to appreciate. God only gives us what he thinks we can handle. He must think I am a warrior.
You are a warrior! I KNOW itās not easyā¦and how difficult it is to form new relationships in a city all alone when you frankly just donāt have the energy to be present enough to pursue them. When I was married before, I lived away from my family and I wasnāt aware of the condition yet. When I had what I known now to be flares, my ex would sit at home hanging out with this family while I drove myself to the hospital thinking I was having a stroke. Going through a divorce is already hard ā¦and we both know the taxing effects of stress on brain disorder sufferers. The good news is that you found out who he WASNāT in time to learn not to depend on someone who isnāt armed to give you the unconditional love that you deserve . Godās Love surpasses all. You and strong and you will make it through this! Considering surgeryā¦or moving closer to family? I can only imagine what you are going through dealing with this alone and I will be praying for you.