by Maggie McCarey
When lipedema support first began via forums, one common topic was the immobility that often accompanies lipedema in later years. The forum thread invariably evolved from a conversation that began: I am going to do everything I can to keep myself out of a wheel chair. Over the years, immobility has become less and less common to forum discussions, even though reduced mobility and even immobility are possible outcomes of lipedema. Do we talk less about the wheel chair because we fear it, or because, as younger women join our ranks, the emphasis is more often about cosmetic solutions?
Frankly, that an undiagnosed disease causing women to become wheelchair bound exists, is still flabbergasting to me. Yet, it is true and fearsome and raw. In the years I have been in the lipese community forums, immobility has been pushed further and further away from our awareness. Perhaps, it is time to ring the alarm again. Lipedema sometimes causes immobility!
I have sought at various times to compose a chronicle of events leading to my immobility. Because this inordinately slow progress is unnamed and unknown, our personal aha moments are seemingly random rather than progressive, making the timeline difficult to recreate so please bear with me.
My Immobility Timeline
1951: I am born in a hospital bed with no one in attendance to steady my head and hold my neck against injury. Why is this important? Many spinal birth defects are caused by an unattended birth.
1953: I whiz down a slide so fast I go airborne and hit the slide’s edge at the bottom. I am diagnosed with a compressed lumbar region which takes weeks to heal.
1956: Though I am hyperactive physically, I can do no gymnastic moves without injury and throughout all of my schooling K-12 l am exempt from gymnastic moves in P. E.
1956-60. I unconsciously learn to adjust my upper body to compensate for the lack of flexibility in my lower body. I fall often. My legs ache at night. I am never without pain.
1961: I am diagnosed with Perth’s disease. (Its symptoms: The child may show signs of limping and may complain of mild pain. The child may have had these symptoms intermittently over a period of weeks or even months. Pain sometimes is caused by muscle spasms that may result from irritation around the hip. Pain may be felt in other parts of the leg, such as the groin, thigh, or knee. When the hip is moved, the pain worsens. Rest often relieves the pain. http://orthoinfo.aaos.org/topic.cfm?topic=a00070). I can bear no weight for 6 weeks.
1966: I discover tennis. I play daily and win all intramural tournaments but fall easily against my ankles because my body cannot twist. My first conscious adaptation occurs when I jump high to meet the ball and then depend on my feet to land my jump after I twist my body midair back to center.
1970’s: I cannot easily carry my children up and down stairs or for more than a block. I am never again able to carry weight on my back, i.e. backpacks, children in baby carriers, etc.
1980’s and 90’s: I work out incessantly, leaving a fitness center to come home and do my nightly exercise protocol, including resting my body on one knee and bringing the other leg straight out to the side, then swinging it as far forward and back as my hip allows, 50 times each leg. I do this for the next 30 years.
1981: I can no longer wear heels of any kind by age 30 without causing weakness in my back..
1985: Even though I am thin, wearing a waist band in pants and skirts causes my lumbar region pain. I first become aware of the weight of clothes when I put them on.
1987: My hips become inflamed and stay that way for 6 weeks without explanation.
1990-2: In Nome, Alaska, I experience almost zero humidity. I have little to no pain but when I leave Alaska for the last time, my daughter asks me to jump rope with her in Anchorage, and my body refuses. I realize then my “structural distress” has progressed and that I may have a disease.
1994: Homesteading, carrying bags of grain, planting trees and in good health, I begin to notice that I cannot get out of my favorite old rocker easily, and I often used upper body weight to push myself up out of every chair.
1996: I buy a treadmill but when I use it my knees give out. So, I create a walking trail in my sanctuary but after awhile, my right foot doesn’t lift as high as my left, and it catches on carpet while I walk. I discover uneven terrain, and I miraculously begin to hike many miles a day. I stay in great shape, walking and climbing mountains daily. However, I can only walk this distance with loud music playing in my ears.
2000: I walk at least 3 miles everyday. I am in great physical shape. I cannot get up from a sitting position on the floor. I cannot walk up a stairs without holding onto a railing. I cannot run downstairs sideways. I can swing into the cab of my husband’s truck, but every move is played out in my head before I execute it.
2001: I walk up and down stairs and along trails by dragging my right foot and swinging it outward almost without detection. One day my husband says, “Do you know when you walk up a stairs you bring your right foot from behind and then swing it forward?” I didn’t know until then.
2002: I cannot get in and out of church pews or movie seats. I avoid couches and soft chairs. I begin to spec out steps and their height when going to an unfamiliar place. I avoid going to the hospital to visit my congregants unless I have to because the walk on concrete creates lipedema pain, which has become more identifiable and less manageable every passing day. I find ways to fall back onto small toilets and to pull myself up from nearby sinks. I still walk many miles a week but I can no longer lift myself out of a bathtub from a sitting position.
2003: I have a huge stress-related event which precipitates a total structural collapse. I don’t walk for months. I shuffle. I don’t remember now how I manage to keep working. I walk with the sensation of wearing sweat pants filled with sand and walking in water, no pain. Gradually, I walk again. I don’t know how or when I started walking again as I just push my body along anyway I can until it remembers. I am in peri-menopause. Every month or so, my lower back goes out for two days before my period and I can barely use my right leg until the moment my period begins.
2004-2008: Remission but no longer walking more than a few blocks at a time. I work two jobs, both requiring major mobility and I manage, now in constant burning leg pain, which goes away when I sleep. I awake pain free until I walk. I can no longer get in and out of compact cars. I move to a new church with an elevator. They put in a new handicap accessible bathroom downstairs in the parsonage because I cannot go upstairs, even one leg up sideways, my last stair adaptation. I go to Guatemala with feet and legs hugely swollen—a trust journey. I am so swollen, I need an extension to buckle my seat belt on the plane. I return a week later, twenty-five pounds lighter, and I am able to stand for an hour without pain. I feel restored as if I had never had a problem walking. I determine to walk up and down a steep hill outside my house. Within 3 days, I am back to my pre-Guatemalan state. I cannot walk and my body swells. The pain in my legs at night is again unbearable.
2009: This is the first year in a long while that I am very overweight. I get less and less medical care because my immobility can be blamed on my weight. I complain about my back and I ask my doctor for an MRI. She calls me with the news that for my age my back is remarkably preserved. Amazing in fact. Two more specialists see me and say I am food non-compliant. I get so bad, I walk with a walker. I do weddings and funerals sitting on the seat of a walker. No doctor monitors my increasing immobility. I have to lose weight if I want their help. I recognize women who walk exactly as I do.
2011: I am on permanent disability. My knees are bone on bone, and if I have knee surgery, my specialist says the risk is so high for amputation, he will not touch them. My weight is once again under control, manageable, stable. I lose 4o pounds with no change in my walking. I trade the walker in for two Canadian canes and I am somewhat mobile again.
2014. Not much change except that my remarkably preserved back continues to seize on me when I stand for any length of time. My habitat becomes smaller and smaller. I seldom go to a show now. I shop once in awhile, and I still keep my house presentable between my housekeepers’ weekly visits. Because I am no longer flexible, falling comes easier. I am no closer to a wheel chair then I was in 2009, except those random times when a knee gives out or I injury my leg in some way. On these occasions, I remember things I have lost, never to be found. I remember the chancy evil eye who teaches me about the fragility of life. I remember to fear the worst.
Then I dream I will walk again. And so it goes.