Why is it unusual for us to talk about Multiple Sclerosis and weight? They both affect us so much and they do affect each other. But we often avoid acknowledging them together. Multiple Sclerosis itself isn’t the only part of having MS that affects our weight – all those drugs that we take for this that and the other play a large part in and of themselves. Between fast food, soda, genetically modified fruits and vegetables, and meat that has been filled with hormones and antibiotics, it’s a wonder we live long enough to even take the medications which alter our bodies on top of everything else. Not surprising that so many of us believe that diet and exercise play a large part in our disease course.
If you have followed this blog for long, you’ll know that I took Rebif for awhile before switching to Gilenya. Prior to starting Gilenya, I averaged 2 to 3 relapses per year, and I have been plagued with muscle and nerve pain since the onset of my disease. As someone who has been diagnosed relatively recently (less than 4 years so far) I am amazed sometimes at how much my body has changed. Once very dextrous, my hands are now clumsy. Once somewhat graceful, I am now constantly aware of the possibility of falling. Once an occasional motormouth, I stumble on words. Once of average weight, even if I always wanted to be thinner, today I find myself recovering from a type of weight loss surgery called vertical sleeve gastrectomy. Surgeons have laproscopically cut me open in 5 places on my abdomen and have removed most of my stomach, leaving only a tube (or sleeve) between my esophagus and intestines.
What led to my weight gain? A life of constant work – stress and a desk job (aka sedentary lifestyle) mixed with the near-compulsory nightly drinks that can sometimes go along with tech and telecom. Poor nutrition due to misunderstanding portions and the importance of balancing individual meals, plus the constant work lunches and dinners at restaurants downtown. Low protein intake resulting from my general aversion to meat and enhanced by my misguided attempt to actually follow the Swank Diet and a job I held for the last two years that didn’t afford a lunch break. PCOS, a disease which affects 10% of women and leads to a hormonal condition in which it is difficult to lose weight and almost guaranteed to gain it (it also comes with high cholesterol and frequent diagnoses of diabetes). Heat sensitivity has always kept me indoors with the air conditioning, hiding from the hot South Carolina spring, summer, and fall.
All of these things led to me becoming overweight. But what pushed me so far as to qualify for and need bariatric surgery? I cannot discount the effects of Multiple Sclersosis:
- lack of mobility
- muscle relaxers
For almost four years I have spent hours upon hours sleeping on my time off instead of being active. Or lying down in pain or just to rest. Or a little muddled on muscle relaxers or Loritab. Or unable to get around due to weakness and muscle fatigue. MS can sometimes have the ability to force you onto the couch. Medications have side effects that lead directly and indirectly to weight gain. Anyone who has taken round after round of steroid infusions probably ignores the dial going up on the scale. It feels unavoidable.
Relapses can knock you down.
For all this time, I was determined that I could get back on track by myself, radically restricting my diet and trying to exercise as much as I felt my body would allow. It didn’t work. I may have stopped gaining, but all of my efforts failed to help me lose anything.
The decision to seek out surgery was prompted by two things.
- A pre-diabetes diagnosis on my 11th wedding anniversary.
- Seeing photographs of myself where I felt unrecognizable. My inside was not being represented by my outside.
While I am still healing and am not close in any way to reaching my goal, at least the first and biggest step is out of the way. Getting approved for bariatric surgery is a difficult, time consuming process that took nine months to accomplish. The timing was terrible – my husband couldn’t be there for it and I didn’t have sufficient vacation time to make a proper recovery before returning to work. But I am past it. Now comes the arduous task of permanent lifestyle change – and we’re back to diet and exercise again. Discipline. Time management. Energy management. My biggest challenges will be overcoming my long hours at work (11 and 12 hour days with virtually no breaks) and changing lifelong habits like drinking multiple glasses of water with each meal.
Ultimately, I would not have taken this step without the motivation of avoiding diabetes. It is very common in women with PCOS (as much as an 80% rate of occurrence regardless of weight) and it runs in my family. Years ago I worked for a man with diabetes and witnessed its effects. Piece by piece he lost both legs to amputation. Multiple Sclerosis typically comes with something referred to as hypersensitivity or hyperreactivity. In other words I am utterly ticklish and almost anything can hurt me. Rebif injections were a nightmare and I don’t want to take insulin.
Bariatric surgery fails some patients, but I am praying that it doesn’t fail me. Practically speaking, I hope to gain a lot from weight loss. A smaller body will give me greater mobility and a greater ability to exercise. Being able to exercise will decrease my disease activity in the long term. Because I already have one very weak leg, there is a chance that I will need assistance in getting around at some point in my life – a lower weight means that it will be easier for others to assist me. Medications will be more effective. The MRI machine will feel less restrictive (but I will still have to dope myself up for that…). If I am successful I may be able to eliminate blood pressure and cholesterol medications while preventing the need for blood sugar medications. Perhaps one day the only medication I take will be Gilenya and my multivitamin! In a way, I feel that I am preparing for the rest of my life.
A long road lies ahead of me. I will take it step by step.
How has your MS affected your weight? Have you ever considered surgery to assist with weight loss?