This is a difficult question for me; one I struggle with everyday. For over two years I spent my life in my house; fighting to get through each Cluster Attack. Many times I would feel like a bear hibernating. The only difference was the bear got to leave his cave when it got warmer; I got to leave mine to go to a doctor's appointment. While those days were lonely, they were easier in many ways. When I began to slowly start living my life again despite my Cluster Headaches, it meant that I would have to find a way to step out the door. I do not currently take any preventative medications, none worked for me. So I rely on my abortive medications that can leave me lethargic and fuzzy brained; that is when it works at all. The cherry on the top of this sundae is that I can only use so much of this medication a month. For a person having 6-8 Cluster Attacks a day (chronically) and Chronic migraines on top of that; my 5 vials of meds do not help 90% percent of the time. So what I have had to learn to do is plan my life around my priorities. Meaning: what gets top billing and what can I absolutely skip. While I would love to put family at the top; it is not possible. My top billing has to go to doctor appointments. What I have come to find out is that doctors will FIRE you as a patient if you miss regularly scheduled appointments and rescheduled appointments from the ones you previously cancelled. So this means I have to have my emergency meds on hand so I can make it to my appointments.
Family definitely comes next. This is a bit easier to control because my family accepts me for who I am. So they know that if I am having a bad day and already used my weekly allotted medication, I will either cancel or give my best try to go and not allow the BEAST to take over (it kinda looks like a remake of the HULK when this happens).
Friends tend to get the bottom billing. And this is a tough one to admit because I have some amazing friends who have stuck by me through all of this. But I only have so much medication to go around. And I am still extremely embarrassed to have attacks around others and I avoid it at all costs. Sometimes that cost is a friendship.
So until someone finds a better solution I will continue to live my life by the moments I can be a part of.
Some day, and hopefully soon, you'll never have to put anyone at the bottom. Love you!
ReplyDeleteThanks Mandi!!!!
ReplyDelete