I’ve been told, doctors consider it very important that
patients are able to imagine their lives beyond their chronic illnesses such as
Migraine. A patient’s ability to do this can help to determine their success in
better management.
Keeping my eye on the prize is super easy for me. I don’t
know if it’s because I lost so much when I got sick, and had so many plans from
the early stages of my life, or because I’m just normally a *think forward*
person.
- If God granted me freedom from my chronic conditions – Migraine, dystonia, chronic pain and spinal disease, hyper-mobility, autoimmunity (lupus, Sjogren’s Syndrome, Graves’ Disease and ?) I would pick my life up from whence it was left.
- I would dust off and clean out my enormous stained glass studio and start designing and making beautiful windows again. I would renew my love of art shows and begin attending them again because interacting with my clients and the other artists there was such a joy to me, it’s difficult to tell you how it felt. People have always had trouble remembering my name, but everyone knew me as “The Angel Lady”, and I’d finally be able to get all these creative designs out of my head and into the real world for me to personally enjoy and pass on to others. I used to make my living as an artist and designer and I really miss it.
- I would begin spending time and riding my beautiful horses again. Believe it or not, our farm was reasonably successful in breeding, training and teaching riding. I LOVED working with kids and the horses, and was very proud of the very young national level teams I took to compete in knowledge competitions as well as riding shows. I had nine year olds nearly acing the state college horse production final, which was amazing to watch! I have an unused room full of trophies, with walls covered in plaques my own horses won, most with my daughter astride. I don’t go there because it reminds me of what I’ve lost. I sold nearly all my horses, including the deep golden stallion who was well-known in our breed and had beaten horses from all over the world; the little mare that helped my daughter win six national high point titles in a single year; and Nicole - the only daughter of a very famous exported, deceased stallion, still producing beautiful foals. My stallion was abused and is now deceased, so if I could, I would dream him back to life and back home with us, as it was before his suffering. I would buy back Nicole and Ali, the two mares that were such a big part of our everyday lives, as well as Nicole’s foal it took me years to produce, that I never got to see. I would ride my gentle old horses through green fields and forests, and watch deer grazing in the tree lines, and I wouldn’t have to worry about the sun making me sick.
- I would get a normal job, probably as an emergency dispatcher again.
- I would go to church every Sunday again. It’s been many months since I could make it to a Sunday service, and I miss it so very much.
- I would start taking Emergency Medical Responder calls again – something I only recently have had to stop doing.
- I would go back to school. I had my kids early, because we were told that was our only chance of ever having them at all. I was a full-time mom, choosing to work jobs that allowed me to be with them 24/7. It also meant putting off finishing school, something I have always regretted because I got sick before that could happen. I dreamed of a terminal degree. Not having the right letters after my name often means that I receive little respect and few opportunities, despite my experience, intelligence and knowledge.
- We would become foster parents. This is something I’ve dreamed of doing since meeting my lifelong best friend whose family suffered through the foster care system. I am bursting with love for kids, and for some reason, work well with troubled kids, often utilizing the horses and animals that can often change their lives.
- I would finish my house. I have a background in restoring and remodeling homes, but when I got sick I had to stop. About 7 years ago we hired a contractor to remodel this home. We demolished much of it to the studs and began to rebuild, but one day our contractor left and never returned. Instead of a peaceful space to live, our home is filled with boxes, an un-finished particle board floor (replete with slivers when I’m not careful) and no doors, trim, and minimal paint. One room still needs more drywall work, having been left more unfinished than the other rooms, and the new siding was left nearly finished. Even the custom cabinets we had made were never finished. Surrounded by an unfinished home in chaos makes me feel that my life is unfinished and chaotic. There is nowhere to go for peace. The basement is filled with the supplies to finish the project, and it’s impossible to use our garage for the cars that are being weathered outdoors. Even the yard is a problem. Nearly 2 years ago we hired a firm to re-grade and redo our yard. They’ve never showed up to do the project despite multiple meetings. I have still not even seen drawings to tell me what it is going to look like. So, arriving at our home means walking through mud and weeds through the back yard, where once there was a nice front yard and front entry porch. Having friends over is not an option for my family, and this often makes me feel quite lost. Living in the country is isolating, even when inviting others over is an option.
- I would travel. Now that the kids are grown and married on their own, I want to do things and go places. Simple things like a trip to the zoo can only be a dream right now due to light sensitivity. A day in the car leaves me sick and in pain, and the fluorescent lights of a simple museum will also make me sick. I have a bucket list of places I want to visit, such as Petra, the sphinx and the great pyramids. I want to take my kids to see Italy and Greece someday, and swim in the beautiful blue waters there.
- Which brings me to the last thing I would do: I would fix our below-ground swimming pool. I grew up swimming competitively, practicing sometimes twice each day, since I was seven years old. Water was my second home, and having a pool that needs repair makes me sad. I can’t swim during the day anyway due to light problems, but if those were gone, instead of filling it with dirt as we are currently planning, I’d fix it up, get it going, and again, use it every single day!
My list is long, because I’m not done with this life yet.
These are the things that are important to me beyond my family. I pray every
day to be freed from symptoms, and doctors, and insurance companies, and
monopolizing my husband’s days. I don’t know what the future holds, but I
guarantee you that I’m giving it everything I have right now to get better so
some of these things might someday be a reality! I’m also doing my part to help
find answers for other patients someday we won’t have to ask about life lists
like this.
Today
is the first day of Migraine and Headache Awareness Month (MHAM), which
means that it's also the first day of the Migraine and Headache
Awareness Month Blog Challenge. Every day this month, a new challenge
prompt will be posted on the American Headache and Migraine Association blog.
We bloggers then write on these prompts to help raise awareness and
support and to reduce stigma. - See more at:
http://www.healthcentral.com/migraine/c/123/169583/migraine-headache-challenge/#sthash.0ba6tviy.dpuf
Today
is the first day of Migraine and Headache Awareness Month (MHAM), which
means that it's also the first day of the Migraine and Headache
Awareness Month Blog Challenge. Every day this month, a new challenge
prompt will be posted on the American Headache and Migraine Association blog.
We bloggers then write on these prompts to help raise awareness and
support and to reduce stigma. - See more at:
http://www.healthcentral.com/migraine/c/123/169583/migraine-headache-challenge/#sthash.0ba6tviy.dpuf
Today
is the first day of Migraine and Headache Awareness Month (#MHAM), and
the day #1 of our Migraine and Headache Awareness Month Blog Challenge
(#MHAMBC). - See more at:
http://www.ahmablog.com/2014/06/headache-migraine-blog-challenge-1.html#comments
Today is the first day of the National Migraine and Headache Awareness Month Blog Challenge. Today's theme is:
Today
is the first day of Migraine and Headache Awareness Month (MHAM), which
means that it's also the first day of the Migraine and Headache
Awareness Month Blog Challenge. Every day this month, a new challenge
prompt will be posted on the American Headache and Migraine Association blog.
We bloggers then write on these prompts to help raise awareness and
support and to reduce stigma. - See more at:
http://www.healthcentral.com/migraine/c/123/169583/migraine-headache-challenge/#sthash.0ba6tviy.dpuf
#MHAMBC #MHAM Find me on twitter at @ESchnak
Live your best life,
Ellen Schnakenberg
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