Thursday, April 1, 2010

No Easy Road.

Life is never an easy road. Anyone who can say they have it easy is only fooling themselves and one day they will wake up and realize how much they missed out on...

I post tonight with a heavy heart, burdened and heavy-laden. It's hard to describe. Like God is just laying something on my heart and I don't know what it is. I don't know how to describe the feeling. It is emotional heaviness that I can feel deep in my chest.

I have so many reasons to have joy! God is providing for us everyday, and everyday He is showing His love and Grace and daddy like care for me and my family. I got the call yesterday that my disability application was approved! That is a miracle in itself. Anyone from the US will tell you getting disability here is like pulling teeth. Sometimes it can take years and lawyers and appeals, but God opened His hands in such a short time.

I keep waiting for this "slump" to get better. Usually when I do to much I have a time where I feel horrible and then after rest it gets somewhat better, or at least tolerable. This slump is not going away. Each morning I wake up is a struggle to lift my legs, to roll over and move out of bed, to pick up one leg after another to walk across the room... It is disheartening to need to move my leg with my hand/arm. That is a technique we teach children with spinal injuries or Spina Bifida. You grab the pants leg, or around the ankle and move the leg like it were just something in the way, put it where you want it...

It is 77 degrees in the house right now and I am cold. =( I am conflicted. I learned how to cope if it were EDS, I told myself, "this is how you will live and this is how you will teach your kids to live". And then I realized that I was doing it all wrong. I allowed God in, followed Him, but decided I had to do it on my own power... What was I thinking? My own power??

Mitochondrial disease is new territory for me. I mean, as a healthcare professional I can take care of many kids with it (and did), feeding issues, seizures, even one palliative, end of life care for a sweet 1 year old. It was against every fiber of my being to not feed that child, or want to hold him because his parents couldn't bear to do so. He was dying... Of course we always saw the worst of the worst where I have worked.

I am not scared of pain. I am not scared of not being able to walk. I am not scared of dying. Not to say I will not fight it with every fiber of my being, because believe you me, I will!!! I will walk until I collapse and can't move! But, if that should happen, I am not scared of it. I can state the medicine, the science knowledge. And I can state the God I know to heal and love. Bt I have a deep understanding that God's will is the perfect and right way, and that it does not always mean roses and sunshine. If my testimony is to fight this with everything I have to provide an environment where my children may learn how to thrive despite it, well, so be it. So why the burdened heart? Well, like usual I need to know what to expect. A deep rooted need to be prepared. The progression startles me just because of the knowledge that I carry, it seems fast, and like quick sand, the more I fight it the faster I sink.... So what now God? Do I keep fighting hard and sinking faster or do I slow it down and just wait for life to pass me by?

I had a seizure last night. I don't remember anything afterwards, so I guess sleep took over, but this morning everything hurt so much. My eyes hurt so much! Still... I am out of reserves for right now. Nothing in the bottom of the pot, Use it as you make it... And at the same time I know that God is the perfect ATP, the perfect manufacturer of energy. So what now God?


  1. Trish - not too well so not even replied too your last mail yet. I'm sorry.

    I hadn't even realised you had had the diagnosis of mitochondial disease I don't know why that is, my brain is mushy.

    I lift my legs also in the way you describe, waiting for my brain to let them know they need to move is too boring!

    Because you had a seizure last night I think this is one reason you feel as you do today. Perhaps via mail soon we can chat about seizures and efficacy of meds.

    Today out with spouse, walking through a narrow street in the old city near us I realised I was 'wall hugging' using the building to grab as I slowly slowly walked, behind me I had a lady pushing her elderly mother in a wheelchair and I sensed their impatience at my tortoise shuffle. I did this thing my sister taught me and drew an imaginary bubble around my head, so that any bad vibes bounce right off and don't get to me. Concentrating hard I reached the end of the narrow street and knowing there was a bench at the end knew my spouse would sit there to wait so that we could sit together. Walking side by side is out of the question due to constricted space. I made it and the daughter and mother in the wheelchair finally overtook me at speed relieved. I think they were embarrassed for me but I wasn't because I had remembered my handy bubble.

    This slump needs some tender loving care Trish. To fight for health and mobility means we have to remember to cherish ourselves too. I learnt something on a pain management course and was told that many with chronic conditions feel guilty a lot of the time for all the reasons that accompany conditions. We forget to reward ourselves. Taking time each day to have 'me' time - time out - whatever we choose to call it. If you are safe to bathe because of seizures treat yourself to candles and soothing bubbles. If your husband needs to be there to keep you safe then he could massage your feet. If its getting someone else to give you a massage, manicure, pedicure, treat yourself. If its time out to read or watch a dvd do it. I can't comment on your relationship with God but I do know that if he could talk to you he would want you to remember that you are worthy and need a hug, your daily treats and down time.

    Sometimes I day dream and thats good. Because my body fails me and I have to stop I have the luxury of looking at the beauty in the small things. Let the world rush, you are not losing the race you are doing it your style, for you are unique and because of that always remember you are special. when your body lets you down gather your children around you and tell them you love them, stroke their hair and in the stillness when you don't need to fight for a while I know you will find peace.

    In the email I plan to write! I shall talk of my naughty dog, which will make you laugh.

    Trish, I have lit a candle for you and as it slowly burns filling the room with peace I am thinking of you now. So imagine now, that the muscles tight and exhausted from the seizure are as light as air, your troubles are not there, I have stolen them for a while and put them safe in the worry box, shut the lid to be opened another day. When they come back out they will be less of a burden, some get to stay in the box. They will be fine there worrying away together they may make friends and push their way out as achievable goals and solutions. The candle burns for thirty hours and each day for an hour I shall light it again for you and we'll open the trouble box to pop the ones in that are too much to bear that day. Whilst I do that, you must promise to remember your me time, the treats and the peace. Now we move on. Virtual friends together.

    In my email along with naughty dog stories. I will remember to send a photo of the worry box. That way you can just visualise it when you need it. See pacing works, another job off the list!

  2. You are so sweet! Not many people know what to say except sorry, not that I am looking for them to say anything, but you always know how to make it less guilty... I could just imagine you walking on the streets, at your own pace with your own agenda and the beauty of an old town. My husbands family live in Annapolis Maryland, which is a very old town and it has some cobblestone streets with beautiful trees and shades and the ocean. It is amazing. I always find peace with God in those places. Thanks! I cant wait to hear your funny dog stories! The doctor my kids see, geneticist, she thinks I may not have EDS at all, that it may be a mitochondrial disease affecting everything. SHe said many of them cause very loose joints that can be confused for EDS. I hadn't had a seizure in a long time before that night... Today was a little better. Have a blessed night and I will try very hard to remember me. I am feeling a manicure now that I am not working! We couldn't have fake nails before, so I am thinking acrylics might be very pretty!! =)