By Lisa Scroggins
Before I had to start using a walker to get around, I was still working full time, plus I had an hour one-way commute to work. Honestly, I worked far more than the 40 hours a week that counts as full time. But in those days, I used to joke that my healthcare was an additional part time job, in itself. Between going to the clinic every thirty days for an infusion, and handling refills for other medications, as well as the other “normal” things that everyone has to do (teeth cleaning, physicals, mammograms, etc.), it took up too much time, in my opinion.
I had it so easy! Now, it really is a kind of job. After I stopped working, almost three years ago, I told myself that I would dedicate myself to “rehab.” With a lot of other life details that intervened, I didn’t do the best job of rehabbing on my own. There was a little bit of denial; I believe that deep down, I thought maybe without the stress of my job and commute, I would just naturally “get better.” Probably, this won’t be a shock to anyone, but that’s not what happens! It took me awhile to come to terms with my new and unwelcome status. Much of the turmoil surrounding my leaving the workforce, and the other big changes that took place in our lives has calmed and life feels a little bit stable now. And so, my new job/work of rehab has begun in earnest.
I have come to embrace a sort of DIY wellness attitude, as I no longer enjoy a “yes, but” condition, as in “Yes, I have this disease called MS, BUT I can still work, and it is invisible to most people.” It’s plain to see that I’m disabled. After I left my job, I spent a good year and a half traveling to an MS specialty clinic that’s within a day’s drive for me, hoping that maybe there was a “holy grail” that the ordinary neurologist wasn’t hip to. There isn’t. I did learn a lot that I hadn’t known before, and I also learned a hard lesson: not all neurologists, even the specialists, have a decent bedside manner. I had a gut reaction to the specialist the very first time I saw her, but told myself that as long as she might be able to help me, I shouldn’t worry about the touchy-feely part. I know better, and I’m not sure why I didn’t trust my gut, something I always told my kids to do. I’ve stopped going to that doctor, since her demeanor was so objectionable to me. While I may return to that clinic, it will be to a different neurologist. I’ve empowered myself to only seek out assistance from doctors who seem to care about me, something paramount for mental wellness.
Nowadays, I spend a lot of time reading and researching everything from up-and-coming medications to figuring out new and different ways to exercise. One new issue for me is pain. Except for the occasional flashpoint of trigeminal neuralgia, pain wasn’t an issue for me. In retrospect, this new symptom first started to occur about a year and a half before I stopped working, and if I hadn’t made a note of it, I wouldn’t have realized how it sneaked up on me. What’s worse is that it has continued to develop and progress. In some online MS groups, a lot of people with MS do have pain. Lots of them take powerful drugs to try to control it. As bad as my back hurts at times, I do not want to use a pain-killer, and would prefer not to add any more drugs at all. I have learned that when the pain seems especially bad, what helps me the most is to apply a cold pack. I tried heating pads, and those sticky thermal pads that you can buy in stores. My husband bought a pad that can be used for warmth or cold. On a whim, we tried putting it in the freezer then inserting it in its carrier and wearing it so that it covers my shoulders and upper back. For me, it’s far more effective than any of the heat methods I tried. I’ve gotten so smart that I no longer wait until the pain is excruciating, but actually try to ward it off. I know that my sarcastic attitude doesn’t always help me, but really, why on earth do I beat myself up for not knowing? What matters is that I found some relief. I try to be open to new ways, even if I don’t believe they will help. There are other approaches to managing pain, too. I take a lot more NSAIDS than I used to (usually Aleve or ibuprofen) but have deemed it necessary. I even tried some homeopathic stuff, but didn’t notice any affect at all. What does seem to help is sticking to a schedule of exercise. I know that it’s vital, but it remains a challenge to structure my day around that. The effort to manage my time so that exercise is a priority, yet doesn’t prevent me from doing other things remains a struggle. For example, it’s important to do food preparation, which involves deciding what to eat, making the shopping lists, planning the menus, and actually preparing the food, all of which used to be easy. I’m still learning how to structure my days so I have built-in rest times between tasks, and preventing pain and fatigue that destroy the rest of the day.
The other thing that really is phenomenal is the smorgasbord of information that’s available to everyone, including people with MS: the internet. It’s friend and foe both, and if you’ve dipped your toe into it at all, it’s easy to get overwhelmed. I have found a few resources that I turn to again and again, because I find them to be chock-full of information. My favorite online tool has been “MS News and Views,” hosted by a patient with MS. I am not a fan of watching videos on my smart phone or any other way when it comes to MS; I just prefer to read rather than watch. But what I like about this resource is:
- It’s run by a fellow patient and,
- Information is available in many ways: MSVN channel on YouTube, with recordings of presentations, E-newsletter, Blog-Talk Radio series archive, a Webinar Series, and much more. The website is: www.msviews.org. The YouTube channel is called MSViewsandNews Learning Channel. There are presentations about exercise adaptations, nutrition, MRI’s, and medication. I have learned to love watching videos and this website is the reason! Some of the videos are almost as good as a visit to a doctor, in terms of the information and education made available.
Wellness in the context of a chronic, life-long disease may seem oxymoronic, but it’s not. I challenge you to take back some control and avail yourselves of a plethora of self-management.