Literally into the darkness
I will begin at the end of my story and venture into the past as need arises. My latest attack started over 2 months ago on April 3,2014. It has placed me in a darkened house- I am not able to return to work as a teacher- I have missed out on special occasions – I do not drive– and have written my own obituary. I know I’m not alone. I can not remember anything grossly abnormal about April 3rd. I am used to having manydays (20+ a month )of migraine pain. I am, in fact, used to pain and have accepted I have chronic pain. I used to go to work with anything lower than a 6 (very severe pain). I work, or used to work, with special ed kids with both behavioral and emotional traumas. I wanted to offer some stability for the students and would often be at work when I had no right being there. Several times a month I would arrive at work only to realize I shouldn’t have gone – but because of the nature of my job – once I was there it was difficult to find coverage and be able to leave. I would take “bathroom” breaks and just lay on the counter and cry.
In March I noticed driving at night was difficult with the headlights blurring into stars. In April I started wearing an ice helmet(a hat that holds 3 ice packs) ( which only stay cold for about 20 minutes because my head gets so hot) at work and home for most of the day-every day. I noticed I started needing to wear sunglasses at work in May. To wear both is very uncomfortable.
I woke up on May 18th unable to tolerate light. My body made the decision for me. I would not be able to force my body to do things it knew I shouldn’t be doing. Driving was no longer an option. Working in lite areas was no longer an issue.
So… You may be thinking. Oh my god,.. Where is your doctor. What about treatments. What about scans and tests. What about medications? What is going on?? My neurologist has finally stated he doesn’t know what is going on. My PCP stated “you are beyond my expertise). The ER department has told me I should not seek help there since their migraine medications do not help. I agree with the drs. I don’t want narcotics. I want answers. I have an appt with another specialist end of July. A specialist in a large city. My current doctor thinks I need IV treatment. He wanted me to get it done in May. I need a consultation first- which is in July. The multiple meds I have tried do not work. One even gave me a mini stroke. I am in my 40’s with no interest to have another one of those.
I’m not sure how I get through the worst days. I get bored. Some days I have to wear a mask due to even a little filtered light that gets through the blankets hanging on every window in my house. I lay in bed, wear a mask and tears flow from my eyes even though I’m not actively crying. If I go outside (even with sun blocking specialized glasses) I will have major pain for the next couple days.
I am open to all types of treatments and follow my drs directions. I think I’m a good patient. Over the past 11 years I have tried chiropractic, massage, acupressure, acupuncture, water therapy, emotional therapy, Botox, pressure points, adjusting drivers seat position, physical therapy, new clothing (yes a professional instructed he to do so),and multiple medications. I don’t have any pain meds prescribed for me. This annoys me. My quality of life has plummeted and everyone is worried about prescribing medication for pain. There are many non narcotic meds. I am looking forward to my appt in July. I am very hopeful that those doctors will have something new to try. Perhaps the IV treatment if appropriate. Perhaps biofeedback.
I feel bad for my kids who now live in a dark house. Their rooms are their only solace. I miss them so much. They come in to see me. There are some games we can play. They read to me. My partner is amazing. She does everything. She takes me to appt and describes our surroundings when we go out and I have to wear a mask. She is very loving and caring. She is also frustrated and I know it is so difficult and painful for her to see me in pain. I can’t believe this is were I am at in my journey. I know I am learning something. I truly believe everything happens for a reason. I am right were I need to be -for the moment.