HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil
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What is like to live in the world of Lyphedema?
Well, it's very much like I would imagine it is like living in prison. Instead of bars, you have swollen legs and feet which will no longer fit into normal clothes or shoes. So when it rains or snows, you can't leave your house. In Alberta a huge portion of the year involves rain and snow.
Not only are you confined to your house, you live with pain and a large inability to move with any ease or speed. For me, without a second railing on my stairs, I had to be led up the stairs by the hand, like a child.
Being unable to reach my feet I could not take the proper care of cleaning and applying creams. Someone has to come in every day and do this for me. Independence is a long lost concept.
Sleep is also a luxury when it happens. I average 3-4 hours max, then my feet or legs will wake me up with pain and that will be it for my night. I will get up, go the bathroom, then perhaps make a cup of tea, watch tv or play on my computer. About one a week, my body seems to go into a shut-down mode and will sleep for most of the day, waking only to go the bathroom and take pain meds.
My sweet Richard, love of my life, does the grocery shopping, a large part of the cooking and cleaning and all of the laundry since the calves of my legs are too large for the narrow steps to the basement (where the laundry is) and boots my feet off the steps.
Even the simple things like enjoying an evening out are almost impossible.
A huge part of our lives has revolved and continues to around my feet and legs, treatment of them, traveling to a clinic twice a week to have them wrapped.
Richard has basically been trapped in my Lyphedema prison with me which was not at all how I envisioned our life together,
Lyphedema is brutal, misunderstood and life altering. So if you someone with very large legs or arms, do not just assume they are overweight and lazy. You try dragging around a leg they have recently removed 6 liters of fluid from and see how tired and worn out you would seem.
I just wish for a time where Lyphedema was understood by the public and medication profession. As well as funding and aids to help those of us who suffer with it daily.
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Thank you for sharing your feelings and realities. Often we forget the burdens some endure for the smallest of actions. Pat was always honest with me about how he felt, and I know that his humor masked more than I could comprehend. His outlet, purpose and passion was helping others to survive and thrive. I believe he would encourage you to make yourself heard, and applaud you for speaking out. I thank you again for sharing, that it might encourage others...
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