Before I got sick with the fevers, pain in the neck and delirium that laid me up for three months, I was a completely normal and very active mother of three. I loved to run a six mile course. I took the kids to a local three mile walking trail where we would walk, run, skate or bike.
The rest of the time I love to work in my garden, both vegetables and flowers…it was beautiful! Indoors I had my own quilting business, crocheted, cross stitched, cooked , and took care of two dogs and a cat.
All of that was before CFS-ME. Things have changed. Running is an impossibility, I only see that walking trail or park when we drive by it. The skates and bike sit in the basement gathering dust. Weeds and stubble have encroached and taken over the garden, and the flower beds are bare. My quilting projects are in the closet with the other crafts. And my dogs have to wait until my husband to come home to get to have some playtime outside.
I'm sure by now you have noticed the contrast. Besides all that is the terrible fatigue which sometimes makes me loose a whole string of days in a week. But worst of all is feeling like my life is slipping by without being able to spend the quality time I used to with my loved ones.
Trying to adjust to all the changes has been, and still is, a difficult process. A lot of the battle is acceptance and pacing. I have to keep accepting the fact that I have a debilitating disease, which in itself isn't easy. And secondly I have to pace how I spend my limited energy.
As any other woman, I used to love going to the Mall, now the thought of that fills me with dread. One thing I refuse to give up is Barnes and Nobles. (and no, ordering online is just not the same!) You see, it's an hour just to get there from where we live, and then we like to spend a lot of time there since we can't go all the time. You know, perusing books, checking out the music dept., drinking fancy coffee etc. ,
But for me the ticker is running…tick..tick..tick.. You only have so much time, so much strength. I use a wheelchair to conserve as much energy as I can. But I know the inevitable with happen. First I move very slowly. I can't think clearly, or form sentences correctly in communicating with my husband. I now have entered what I call "The Fog". I become slightly dizzy, especially when turning my head quickly. The surrounding area becomes to much, overwhelming, for me to take in visually and so I try to keep my head down or focus on singular things. I feel anxiety mounting, become more irritable and I now the last tick has sounded…..time to go home. I lay down in the car, practically passed out, and it takes me three days to recover. But….I do come home with a great stack of new books and a couple CD's!!
What we have to do now is plan these days. We know in advance that the above is exactly how the day will transpire. So I rest for two days before, and I mean rest. Doing things in bed and sleeping as much as I can. The day of the trip I sleep in and my husband brings me a nice breakfast, (by the way he does everything around the house now anyway, thank goodness the children are grown) Then we are on our way. Wheel chair in the trunk, wheel chair out of the trunk…God bless my husband!
My husband is very loving and extremely protective of me, he's watched me go through so much he feels determined to make things as easy for me as possible. But many times he'll say…"Are you sure you should do that? You now how you will be afterward." and my response is always "Yes, I know. But I can't stop living."
And so pacing is the key. Today my husband will help me to plant bright purple impatients, pink petunias, and red flames. Yes, I will get tired, yes I will have to recover for a time.
But today……there will be flowers in the flower bed.
Leeanne
Please visit Leeannes blog....COVERED WITH LOVE
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