Let’s be honest – in many ways the holidays suck.
This is the last in a series of posts based on my personal experience on how to simplify your life. If you have followed this blog for long, you’ll know that I have had Multiple Sclerosis for about 4 years and have been trying to play catchup and pull my life together since the diagnosis. While my husband and I are not really minimalists or zen gurus, we have found our lives improving one step at a time by simplifying as much as possible.
Have you ever opened a closet only to be shocked by how many things had found their way in there? We accumulate things over time. Lots of things. Too many things. Don’t let stuff own you or define you – simplify your life and dump all the junk. When we moved into our house about 7 years ago we probably had twice as much (or more) overall stuff than we do now, and we still have too much. Before my Multiple Sclerosis diagnosis, our lives were very disordered. Parts of our house were unusable or difficult to navigate, and there was certainly no open space for yoga or other exercise.
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.
Information is developed and spread so quickly now. When I was first diagnosed with Multiple Sclerosis a few years ago, patients were advised to avoid exercise as it could bring on worsened symptoms or new attacks. Now we know that this is mostly a fallacy. An active lifestyle for a person with MS means lessened disease activity in the long term and improved fatigue, strength, flexibility, mobility, cardiovascular fitness, bladder function, and bowel function. Those are some very attractive incentives!
Every summer I am amazed at the heat. Ridiculous – right? I have a virtual 2 degree window of comfort (I’m so annoying). Cold temperatures are made bearable with cardigans and blankets. Warm weather, on the other hand, seems to melt my brain. Heat and Multiple Sclerosis work together like two villains in a comic book.
Individuals with Multiple Sclerosis are notorious for heat intolerance resulting in an endless variety of possible repercussions – this is known as Uhthoff’s phenomenon (or Syndrome). Summers may be beautiful, but they are also difficult for us.
Work can be stressful and tough without a disease like MS. What’s a person to do when confronting a challenging career and a challenging disease? Plenty of people (and celebrities) have flourished in their careers in spite of MS. What can you do to be one of those people? What are your options if you simply can’t work anymore? What do you need to know about Multiple Sclerosis and disability?
Last week I began a new position at the company where I’ve worked for over a decade. The coming months are certain to be incredibly stressful. The primary challenges I face on a daily basis in a technical office career are cognitive issues, speech issues, walking (even though it’s primarily short distances), and fatigue. I abstain from many medications because they cause too much lethargy for me to power through a work day while taking them. While these are not all of the challenges I face with Multiple Sclerosis, they are the symptoms that affect me most in my job.
Many times when I meet someone, they are surprised that I do still work. I often think about how I could spend the time I’m stressed and tired at work instead resting, doing yoga, swimming, anything to help myself physically and mentally. Then again, who doesn’t dream about being somewhere else when they’re busy on the job? Certainly doctors and hospitals seem to expect everyone to have open schedules ready to spend hours and days in their offices.
World MS Day is just around the corner on May 30th 2012. What have you done to raise awareness for Multiple Sclerosis this year? I’m ashamed – I know people who have participated in Walk MS for years, but I have not. In fact, I never knew how to get involved until this year. And I’m guessing I’m not alone. We have fantastic Multiple Sclerosis support organizations within our reach – do you know who they are or what they do?
In honor of World MS Day, I present to you the following organizations that provide support to those of us with Multiple Sclerosis and each organizations opportunities to take part in the MS community, including fundraising and raising awareness to fight MS. Each of these organizations provides a wealth of information on their websites and also takes part in advocacy for the MS community.
Happy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.
I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.