WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, January 7, 2012

What Social Life?

This is something that Abby and I talk frequently about and I think it is a sore spot for many.

Abby often talks about how friends simply cannot fathom being too tired to talk, which is a frequent reality for Abby.


We are Abby's social life right now, and the few Drs. visits we take her to- Can you imagine considering a trip to the Dr. a "social outlet?" Abby for years had some good friendships and heaven knows she is one of the most likable people you will ever met, but for the last few years she often has had to decide between emailing a friend or eating. The few friends that Abby has maintained friendships with are mostly online-and she cherishes that each of them is willing to accept if not understand her overwhelming fatigue.

She has shared how "normal" people for the most part simply cannot grasp that you actually can be too tired to talk. She has tried so hard to maintain friendships, even online friendships but after a teen not hearing from her for weeks they assume she is not interested in continuing a friendship. For the most part, Abby totally understands. She is the first one to point out that if the majority of the Drs. she has seen simply cannot understand or refuse to understand that the Dr. appointment she is at for an hour likely has cost her two days of heavy sleep,a week of skipped showers and missed meals, so how would a normal healthy teen even begin to understand?

Recently, we have found a lot of young adults with Mito on facebook and other groups. Yet Abby seems not interested in establishing any friendships. We have had a lot of great Mito families with teens reach out to us and Abby and Abby hasn't tried to establish friendships. I asked her about it and she said that the very fact that they had the energy to find me means they have more energy then she does, and odds are they too won't understand that Abby for weeks at a time is too tired to talk or type. Abby and I figure there are probably others like Abby, but like Abby they are too tired to make themselves known.

It breaks my heart that this fatigue has stolen people from Abby.

Some tiny part of me though is so grateful to have Abby's energy moments all to myself and our family. Greedy-yes, and I don't care. They are becoming more rare and we cherish every one of them. I am one of those people that crawls out of bed at 4-5am but am a total bear until I have digested at least 2 cups of coffee.. Abby will wait and come and chatter with me for an hour- I covet those chats, I covet her smiles. Abby's best friend is her sister Sara. Sara has delayed Grad School this year to be with her sissy. When the girls were little and would play I would get such joy out of listening to their giggles from another room. Now when I hear them stealing across the hall to each others room, or chatting on skype with friends, or Sara running to find slippers for Abby' frozen feet,cooking for Abby, cleaning for Abby(without complaint mostly-they are sisters first!)I am overwhelmed that I have two of the greatest children on the face of planet.

As Abby and Sara have gotten older we are moving from just a parental role to a deeper fuller relationship that is a true and deep friendship. I remember my teen years with a mix of joy and embarrassment(I was wild and rotten!)but I mostly remember the moments of high energy, with a group of teens where we felt we could conquer the world,those hours where we were invincible! I would almost get high off the energy a group of teens could generate. I grieve that Abby hasn't been able to experience that...but I rejoice that I have such a neat family that we have all grown to fill the roles that normally friends fill.

To all our friends and family that understand Abby or work so hard to be patient with our hermit lifestyle- we love you guys! To those that don't, may you continue to be graced with healthy bodies where you will never be forced to understand.

Here is the link to the Spoon Theory- it is very popular in the Mito crowd as so far it really does the best job explaining the day to day life of a Mito patient.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

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