The Impact of Mobility On The Quality of Life and Self Esteem

People with mobility and health issues wil "get" me when I talk about this stuff but other people who have been lucky enough to not have to deal with this may not. To understand me a bit more easily, here is my condensed background history:

In 2000 I was a fairly young, single mother of three very young children and I was diagnosed with so called MS. My biggest fear was that I would lose the use of my legs forever. (This fear led me to the regrettable decision to take Copaxone.)It also led me to create a goal to rehabilitate my legs and hike the West Coast Trail on Vancouver Island. I went on the Swank diet and joined Curves and two years later, me, my two young boys and several friends did it. My legs were not 100% even after 2 years of working extremely hard to get them back in shape. Maintaining my mobility and quality of life has always been a constant battle. I was told by my neuro that my leg problem was just part and parcel of so called MS. He didn't know how the disease would progress and he didn't know if the drugs would help. Nobody had any concrete answers.

Living with the constant fear of the unkown SUCKS! For a few years my condition stabilized and I beleived I was "managing" my so called MS. In hindsight, Im pretty certain that Copaxone did not help me back then. I beleive it was the diet and excercise that kept me healthier. From everything I have learned in the last couple years about so called MS and the Disease modifying drugs, I am more inclined to beleive that I was just in a natural remission (the nature of the beast).

Without going into too much detail, over the next few years, my health started to decline despite my healthier lifestyle and Copaxone. I stopped taking Copaxone once I was convinced by my research that it did little more than placebo effect. I was convinced it was actually making me sicker. The doctors had no answers and their only solution was more useless and harmful drugs. I was in what I called "Free Fall Mode" at that point. I had been under the illusion that diet and drugs were helping me manage my symptoms and that I was winning. Reality gave me a huge slap in the face and I was extremely scared. My biggest fear of becoming an invalid and having my family become my caretakers was looming on the horizon. Depression set in. I spent many hours planning on how I would euthanize myself to save me and my family the humiliation and the painful drudgery.

FEAR of the unkown. FEAR of a slow, painful death. ANGER that there is no cure. ANGER that I am losing my independence. SHAME that I can't be a "whole person", a wife, a mother. GUILT that my sickness was holding back my huband and children. GUILT that I may have passed on this disease to my kids. TERROR in the knowledge that my sickness is just going to get worse.

With all this mayhem going on in my brain I wanted to scream when I heard someone say "But you dont look sick." Or "Your MS seems to be the good kind." Or "Keep positive."

WHAT THE FUCK???? Note to non sick people: Sometimes it's better to just shut the fuck up.

So dealing with this mentality for years had a hugely negative impact on my life and my family's lives. I never had the highest self esteem to begin with, so add this chaos to the mix and you've got a pretty sad cocktail. I tried to help myself by setting goals and looking for the positives but year after year of being pummeled physically and emotionally was soul sucking. The reality was that my life was spiraling down, out of control. I use to laugh and tell myself that I must have been a horribly bad person in my last life to be reincarnated into this one. I would also tell myself to suck it up because there were people who were worse off than me. These were the "mental band aides" that only helped a little bit, unfortunately. The neuros and Doctors would only offer drugs and give me that "I am sorry but you're fucked" look as they chased me out of their office because I refused their drugs. I had no more positive things to plan for in my future. Hope was a dirty, four letter word. I knew I was fucked.

In 2010 my hope was restored! I heard about Dr. Zamboni's work in CCSVI. I researched this information for months before deciding to try it. I was getting sicker and sicker so I figured I had nothing to lose and everything to gain. I flew to Poland to Euromedic and had the angioplasty, or venoplasty as some call it. My so called MS symptoms went away-except for my legs. They got better but not 100%. I was still ecstatic!!! I was still able to walk. I couldn't run or hike anymore but at least I could walk. I was totally cool with that! I had rehabilitated my legs before so maybe I could do it again. I could look to the future and plan holidays and think about gowing old with my husband, children and grandchildren.

Over the next year my legs were getting weaker, slowly but surely. I figured I might be re-stenosing. None of my other symptoms came back, though. My legs got so bad that I was using a WalkAide" machine and a cane and barely able to hobble around for short distances. All those negative emotions started to raise thier ugly heads again. Was a wheelchair on my horizon?? Would my husband leave me? Why would anyone want me? I saw the look of fear and pitty in stranger's eyes when I was out on the street. I couldn't bear to see it in they eyes of my loved ones. I would cling to my husband's arm when we went out anywhere and I could only plan to go out when I knew he could go with me. I was sad and angry that I would never hike again. I was terrified that I would be in a wheelchair shortly. My self worth was at an all time low.


Fear, anger and shame are not always negative. They can motivate. These emotions kicked my ass into finding a solution for my leg problems. I found out I had venous insufficiency in both my my legs from bad valves! I had a vein ablation treatment that basically burns out the the useless saphenous veins. I am now in the process of rehabilitating my legs again. I started out with my doubts that the treatment would improve my walking but I am geetting stronger and my walking is improving! My sense of self worth has increased one hundred fold! I haven't used the cane or needed the WalkAide in months! I don't have to go out with my husband and cling to his arm anymore either! Yesterday I spent the whole day in the busy city, by myself, walking for hours. I had my moments of fear and doubt when my legs would fatigue and I couldnt find my bus. I wanted to cry at one point but I was able to tell myself that I have come so far and I AM GETTING BETTER and it's only a matter of time and hard work before I WILL HIKE AGAIN!


Funny how things have gone full circle for me. Twelve years ago I was just diagnosed with so called MS and working at rehabilitating my legs. Today I am dealing with the cause of that so called diagnosis and working at rehabiltating my legs once again! Why did I write this? I want people with health issues to know they are not alone and I want the "healthy" people to get a glimpse of what we go through mentally, not just physically in our fight. I want Doctors and neuros to take note and realize that when they diagnose us we beleive them. When they give us drugs we trust them. I was told my leg problems were so called MS for years! If I would have listened to that I would be in a wheelchair right now!

If it weren't for my sense of hunmour and me telling myself that this was a valuable life experience I would probably be insane. I am hoping-yes I have HOPE! It is no longer a dirty, four letter word! I am hoping to hike soon and maybe go on a backpacking trip because I never could bring myself to throw out or give away my backpack. If I did, I feared it was giving up, and I would never hike again.

Am I a stronger person for experiencing all this? Probably. But at what cost? I would NEVER wish this on anyone. (Well- maybe a certain neuro or two) I am planning on getting on with my life and putting the last twelve years of pain, fear, anger and shame behind me. Sift out the lessons and good times, brush myself off and go forward.