Living with MS is hard — I’m just going to start right off with that. It’s something that can affect every area of your life, from loss of mobility to loss of eyesight to loss of bladder control. It’s not super cute.
However, there is hope! In fact, there are quite a few tools and hacks I’ve picked up through my journey with MS that have been life-changing for me — or at least have allowed for some life happening. Here’s a list of some of my personal tips and tricks.
Build your team and know them well
You have an MS diagnosis — now what? First, build your care team. Approach it as if you’re the boss working on a new project: a project of your body’s health. Your care team may be filled with consultants that can help provide you with information to best navigate your journey.
Here are a few people that have been key in my MS care team:
MS specialist neurologist
There are lots of different areas of neurology; finding a neurologist that specialises in MS can be extremely useful in helping you determine which treatments are best, what therapies work for symptoms, etc. They may also be able to provide you with referrals to other specialists in areas outside of their realm that are affected by MS (such as a urologist or a neuro-ophthalmologist).
Some MS specialists may have an MS nurse available for questions or other information. This can be a great resource. For example, if you’re experiencing side effects of a treatment or just need clarification on something from your last doctor visit, you may be able to get in touch with the MS nurse via email or text message. (Pro tip: I like to send them a little thank you note with a coffee gift card. It’ll make their day — and make you a bit more memorable.)
Rehabilitative therapy can be a key part of managing a debilitating disease. A physical therapist can help you strengthen areas that have grown weak or provide assistance on how to work around a symptom that affects your mobility. An occupational therapist can help you find the tools you need to enhance your quality of life. Though very different fields, they are both an essential part of my MS team.
Gadgets are cool — gadgets that help you save energy and support your overall safety are even cooler. These are my go-to gadgets:
When I was first diagnosed, I lost the ability to use my legs. I spent a summer in rehabilitation to relearn to walk with arm crutches and I cannot preach enough about how amazing they are! Unlike a cane or a walker, I’ve found that an arm crutch allows for better support throughout the whole arm. I also have a walking bicycle that I use for longer distances (longer than a quarter mile). These help me stay within my physical limits, but not be confined by them!
Wheelchairs might seem scary but they are sometimes necessary if your mobility has decreased significantly, or if you just need help conserving your energy. I was able to get a custom-fit wheelchair that has been my lifesaver on more than one occasion. I even spent one full year in the wheelchair and did I live! As much as I would rather have been walking on my two legs, I was so thankful to have this aid to experience life with.
So simple, and yet so helpful. This chair helps me conserve energy and feel much safer. Not much explanation is needed beyond that!
The little things
I struggle with tremors, and holding items in my hands can be difficult. With the help of my occupational therapist, we found weighted items (utensils, pens, pencils, scissors) that would help me have better control. I also have a little loop on the back of my phone case which helps me have better control while using my phone. It really is the little things sometimes.
Your care team can help you decide which aids are best for you and can make sure your aid is specifically fit for you, which is so important.
Ice ice baby
Heat and multiple sclerosis are not best friends, like, at all. Heat, whether it’s from a hot shower or a warm climate, can exacerbate MS symptoms and create serious discomfort.
Staying cool in the heat is ideal. Luckily, there’s ice. And how I love the ice. I use an ice towel (a neck towel that has ice packs in it) whenever I am outside or at physical therapy. I’ve also been known to just bring a cooler of ice packs wherever I go and stick them everywhere. I drink water continuously to stay hydrated. (Pro-tip: I have a doctor’s note allowing me to bring water in to any venue, which is especially useful during the summer months.)
And the most important thing: Don’t stress. If you overheat, it’s important to find ways to cool down quickly, but try not to stress. Research has shown that stress may exaggerate your symptoms. So stay cool — literally.
You can have the coolest gadgets, the best doctors, the top-of-the-line medicine, and yet, with MS, you might still be struggling to find the bright side. That’s why I have found it so important to condition my brain to seek out the positivity in all situations. It sounds easier said than done, I know; I even question myself when I’m at a low moment.
The way I see it, there are two choices: to allow the disease to make me a victim, or to grow in the journey to become a warrior. Both take the same amount of effort, but I have found that the warrior route is most rewarding. By conditioning my brain to seek that positive side, to seek that warrior status, it eventually became second nature. It was hard work, but it pays off every day.
It’s important to note here that depression can occur with MS. If you’re struggling with feelings of depression, do not hesitate to reach out to your doctor or healthcare team for assistance. They can help you find the tools you need to help manage it.
Stress and toxic removal
Like I said before, stress and MS don’t mix well. To help control my stress levels, I’ve found it extremely helpful to make a list of all the things in daily life that caused my stress in the first place. Then I identified which ones were in my control and which ones weren’t. Then I made the hard choices.
There are friendships I had to step back from, TV shows I can no longer watch, and loud, busy restaurants I no longer hold reservations for. It was difficult, but it’s helped.
A stress “detox” can help you to find clarity and focus on what counts. Remember: You are the number one priority in your life — treat yourself as such.
Live your life
Sounds pretty basic, right? Easy even? Yeah, I know the truth — living with MS is really hard sometimes! But life is still so fabulous, despite the disease eating away at your myelin sheath. Don’t give up on life. Work closely with your care team and then go ahead and take that trip, go to the concert, enjoy that nap. Almost everything in life can be adapted; it might take some tears, a lot of consulting from your medical team, and a whole lot of searching, but I promise, it’s all worth it.
NPS-IE-NP-00087 October 2020