MS Patients Need Patience

Living with Multiple Sclerosis for close to two decades has taught me a lot of valuable lessons. I’ve learned that it’s usually better to use my cane than not. I’ve learned that eating before taking medication can be pretty vital. I’ve learned that air conditioning is no longer a luxury, but a necessity for me. I’ve even learned how to appreciate the smaller things in life because of my disease. One of the most important things I’ve learned through a life with MS is the importance of patience.

Exacerbations

If I was impatient prior to being diagnosed, I’ve certainly been forced to adapt and change my ways. Learning to relax and wait out whatever less than pleasant experience I am enduring has become a key skill for me. Early on, I discovered that patience is needed with exacerbations. Whenever I “relapsed” (still a word I hate but it is recognizable to most) I’d constantly keep reminding myself that eventually the exacerbation would end. I simply had to wait it out. Sure, problems may keep persisting after it, but I knew that life would still improve once I got past it. It’s incredibly frustrating waiting to improve, particularly if you are on a course of steroids to help shorten the relapse. Steroids, at least for me, can really mess with my emotions. Waiting out an exacerbation isn’t easy, but by constantly reminding myself that it would end, I slowly learned a bit of patience. Also, there isn’t much of a choice. You either learn to accept it, learn some patience, or you going to be extremely miserable. Other then taking steroids, there isn’t much you can do to get past an exacerbation. For me, that forced waiting really taught me a lot about patience.

Treatment

Another area where I’ve learned some patience has been with regards to treatment. MS is a disease that can vary so much from person to person. Along with that, treatment options can also vary. It can require an enormous amount of patience to find the right treatment. I went through several medications, even two at the same time at one point, and for a period of time, when, against doctor’s wishes I foolishly took no medication (still the biggest regret in my life!) Now I have landed on one that really stabilized me (for the moment anyway). Finding the right treatment is an immensely personal process that you shouldn’t be bullied into. It’s also a process that requires time and patience. To find the right treatment, you will often have to try several that don’t work, or even worse, have undesirable side effects. Attempting any kind of treatment often requires using it for a significant amount of time in order to fully ascertain its effectiveness. That takes patience, particularly if it doesn’t work out and you have to try something else. Most people can find the right treatment if they have patience and can put up with the time it takes to find one.

Patience everywhere

Exacerbations and treatment are not the only areas where patience is needed when it comes to living with MS. Simply getting around the house can take much longer than it used to, as can just about everything we do. A lot of people with MS get slowed down by its various symptoms. That gets frustrating. That’s when it’s important to remember that the outcome is what is important, not the speed in which we achieve it. As cliche as it may sound, the old fable, the Tortoise and the Hare, really does offer some great advice to those with MS:  Slow and steady is OK and is what will win the race. It may sound funny, but I try to remember that tortoise was patient, and how effective it was for him in the end. Not always the most comforting in the frustrating life of someone with MS, but it’s still very much true.

Thanks for reading!

Devin

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Comments

View Comments (6)
  • dawggurl15
    6 months ago

    I just went through my first relapse in 7 years. It was the most painful thing that has ever happened to me. I have not so lovingly been blessed with hugs and this one lasted for 48 hours (started the day before my birthday) and it was a week before I could drive or even walk normally again. I am allergic to both steroids and cannot use medical marijuana because I am a nurse. The most difficult thing was waiting three weeks for my MRI and luckily no new lesions and nothing lighting up. Now my wait starts to begin my Ocrevus since Copaxone is not an option anymore.

  • collena
    6 months ago

    I recently stopped my rebif because it was worsening my depression- apparently that’s a common side effect. Doc said he told me but i probable didn’t listen. I’m realizing I can’t let anyone or anything rush me; everyone is faster than me, and me rushing is just asking for costly oversights and accidents. Anyway thanks for the reminder that I have to get back on something.

  • Devin Garlit moderator author
    6 months ago

    Thanks collena! No one should ever feel rushed when it comes to making a medical decision. No always easy when it comes to certain physicians, but always remember to advocate for yourself and take all the time you need.

  • Mike H
    6 months ago

    You’re spot on again brother…..as always.

    Mike Halloran

  • Devin Garlit moderator author
    6 months ago

    Thank you Mike! Appreciate that!

  • nikkikl
    6 months ago

    Great article! I’m on Ocrevus and I’ve never felt rough after the infusion. The steroids are kinda crap but I’ve never had issues. From the groups I’m in it seems to be a minority have issues. It can be a long road to feeling a bit better though… it took me a year but again, many have felt the benefit after the first dose. Good luck!

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