“I have a live-in nanny and I am a SAHM. People enjoy bashing that. I also take care of my husband and a special needs child and have been criticized for how I do that. I was even accused of thinking I was ‘better than everyone else’ or I ‘don’t have children’ because of what I do for my husband.
But that is all wrong. My son has nonverbal autism, Tourette’s, severe OCD and anxiety, SPD, a congenital heart defect, and no ‘off’ button. My husband has partial hemiplegia from a routine neck surgery, which resulted in a rare side effect from a crushed spinal cord. I have four dogs, four cats, and my life is in constant, amazing chaos. I also have MS.
I have canceled plans last minute. MS does that to you. I can wake up feeling great and within a few hours, I can barely stand up. I can sleep all night and wake up just as tired as I was when I went to bed. I can fall asleep sitting on the sofa mid-writing or reading or watching TV. I can be in bed by 8 and get up at 6:45, feeling like I stayed up all night. The fatigue is real and heavy and disabling. A ‘good night’s sleep’ doesn’t do for me what it does for you.
I may walk into a grocery store and barely stumble out, unfinished with my list. I can trip on thin air, have my legs just give out for no reason, or get electrical shocks running head to toe that rival EMG tests. So I have a handicap hanger.
I get up early to help my family get off to school and work, and then I do my errands, the laundry, prep meals, clean the house, and get to appointments. That’s on a good day. On a bad day, my husband has to pull me into a sitting position just so I can massage my legs to encourage them to hold me up.
My first symptoms started in high school, but we had no idea they meant anything. I remember one morning, I got out of bed and when I stood up, I had no feeling in my legs. I face planted on the floor while my sister and I had a fit of giggles. We laughed for years about it. It happened several times, but we just thought I slept funny. It would be 27 years before I got an actual diagnosis.
I had my spine collapse for no reason in 2012. I had emergency back surgery then for Cauda Equina Syndrome. I had it completely revised 10 months later, in 2013, when all the screws came loose and were tapping and damaging my spinal cord. In 2017, my L1 slid over L2, compressing my spinal cord and causing permanent damage to my legs. I was fused from T11 to L2 and my L4 to S1 were revised again for the second time. I have incisions on my left chest and my back. They went between my ribs to place four rods, and so many screws and cages to hold me upright. I live with permanent numbness in my thighs and permanent bladder damage. MS causes critically low Vitamin D, so broken bones are the norm, including the spine.
I get tremors in my hands that make even the simplest tasks difficult. Fine motor skills disappeared, and I struggled with gross motor skills. I can’t use cooking utensils without getting hand cramps. My shoulders ache and I can’t always raise my hands over my head. I have trouble swallowing. I can swallow food or liquids and mid-swallow, my esophagus just stops. I end up choking as the food or liquid goes into my upper airway instead of my stomach. I have memory loss. I can forget full conversations. My husband has shown me text messages I have no recollection of texting. I ‘lose’ words when talking. I can see the picture in my head but cannot tell you what it is. My short-term memory is becoming worse. I set multiple alarms and depend on alerts from my phone calendar to keep me on schedule and remind me what I need to do. I depend on routines and help from our nanny.
I can look drunk when walking when in reality my brain is commanding my legs to walk while the information gets interrupted on the way. The myelin sheaths covering my nerves protect that information as it travels from the brain to its destination but there are ‘potholes’ all the way down. With each pothole, a bit of the information being sent gets lost, diverted, or left behind. So by the time the information reaches its destination, only bits and pieces are received. This turns into a wonky limp and ‘drunk’ stagger.
There are medications out there to help slow the progression, but none actually reverse the progress of the damage. I take medication every six months through an IV. MS medications act to slow down the autoimmune response because it is in overdrive and attacking my body, similar to how chemo stops the reproduction of cancer cells. The medication can leave me feeling like I have the flu 24/7. They lower my ability to fight even cold because the autoimmune response that fights off illness is the same one also attacking my body. When the meds slow down that response, they also slow down the ability to fight illnesses. I became septic a year ago and almost died as the infection attacked my body. I spent many days in the hospital when I had a headache that went from suddenly feeling bleh to a 104-degree fever and disoriented in about a 20-minute time frame. I went home on IV antibiotics for a month after I was discharged. I had an MS flare that lasted for 4 months after that.
My MS medication costs $35,000 per dose. I get two doses a year. My insurance pays $70,000 a year to keep me from dying. The medication slows the degeneration of the myelin so maybe I can stay out of a wheelchair a bit longer. I sit there for 30 minutes while I wait for premeds to work so I don’t have a fatal reaction. I sit another four hours while the medication is slowly titrated up until it is finished. I sit another hour after while staff monitors for any side effects. I run a tiny chance of developing a fast-moving fatal brain infection that has no cure, should I get it. It’s a chance I take. Biologics have crazy side effects and risks, but so does Progressive MS without medication.
People with MS have to live flexible lives. Plans can be obliterated last minute. It affects every aspect of your life. How you eat, care for yourself, move and walk, function, and enjoy life. I can’t stand for more than 15 to 20 minutes at a time on bad days. On good days, I struggle, too. I sleep a ridiculous amount of time during flares. I risk breaking bones for no reason. I broke my foot last fall, just walking. I tire out from the smallest exertions. Muscle pain can make the simple act of lifting a mug of coffee seem monumental and painful. It feels like I am lifting a heavyweight.
If there was anything I could share about MS, it would be compassion. People can get impatient with family members or friends who have MS. As much as we want to go out and do what we planned, our body doesn’t always agree. We are tired–beyond tired–but we try. We have really good days and we have really bad days. We don’t take anything for granted because we know that at any time, it can all be taken away from us.
MS affects every person differently because the damage has no rhyme or reason. There is no miracle diet that cures it. If there was, we wouldn’t have this monster amongst our midst. There are some diets that may make people feel better, but they don’t correct the damage or stop the progression. There is no miracle cure or magic supplement or oil that can cure us. They may have temporary benefits, but I am still waiting for a permanent cure. We may have disabilities and deficits. We may wait for years for the diagnosis to be found.
I have MS, but MS doesn’t have me. I keep a positive outlook and enjoy as much as I can, while I can. No one can predict an outcome, but progression can at least give some semblance of an idea of where we are and how to prepare for a possible worsening. Technology continues to advance. Research continues to improve. Maybe one day an actual cure will be found. Until then, I do what I can. I keep moving to prevent losing what I do have. One cannot begin to understand it unless you live with it or care for someone who does. Just being there for someone with MS says so much!
For a family, we have been through so much. I have had three back surgeries and I have MS and RA. My son has autism and my husband has partial hemiplegia. We could wallow in all kinds of self-pity. But for all the bad that has happened to us, so many more wonderful things have happened. If we didn’t laugh as a family, play together, or keep a positive outlook, we would fall apart as a unit and dissolve into tears. We have every right to be bitter and discontented but we are a glass-half-full kind of family. It gets us through every trial, and we come out stronger every time. A doctor once said I should have PTSD from all that has happened the last 7 years, but I don’t see it that way. I am lucky enough to have the support of family and friends so many others don’t have. So many suffer and struggle with PTSD, I can only hope to be their support and shoulder to cry on when life hits them too hard. We all walk life differently. We all handle it differently. Those of us who can be there for those who need support, compassion, and understanding. We should be their voice to educate others on what they are going through.
So for all the negative comments on my last story, here is this. My life is anything but a walk in the park or better than anyone else, but I still love it. Having my child is like having five children. Raising a special needs child has been shown to cause PTSD. Top it with everything else, I would have the right to have a mental breakdown. But I can’t change the facts. I can only roll with it and find my silver linings in it all and move forward. I choose to stay positive. That is what works for me.”
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