I need some friends who understand what I am going through. Not looking for a pity party but I struggle that a few friends have recently written me off. They don't understand how sick I am. Or they miss the old me and don't enjoy the new me. People constantly tell me how great I look. That probably shouldn't bother me yet it does. There is this struggle from everyone to come to terms with how disruptive my condition is.
I do have some understanding people in my life but I feel like I have been left behind by others. My struggle has been life long but as my migraines were silent always thought it was possibly MS or severe fatigue and wrote it off. Never pushed my doctor or could accurately explain my weird symptoms. It's mostly neurological including dizziness, limb numbness, brain fog and nausea. It is constant at its baseline and activity of any sort increases the symptoms to where I shut down. Resting helps but overnight sleep seems to hurt. Mornings and nights are bad but if I am active in the day I have bad migraines during the day. There is a bit of head fullness but the headaches are background and can live with but the brain fog, disorientation along with dropping things all the time are the toughest to deal with. My triggers are many including car, TV, sounds and smell, foods. Have tried botox and several medications all for naught and am about to try acupuncture. The anxiety of feeling like I have no control over my body makes it worse. Things are hard.
On the plus side my family vacation last week was great despite struggling mightily for big stretches of time due to hot, humid weather along with the travel. Had been worried that my health would ruin the trip but we all had fun and relaxed and created some moments so I am celebrating that. Reminded me that there is opportunities for pleasure in this world.