When You're Doing All You Can

By Devin Garlit

3 min read

“What about this? What about that? Have you heard about that other thing?” Our well-meaning friends, and sometimes even ourselves, are constantly looking for the answer to our chronic illness. Searching for that magical treatment that will fix us and let us live the lives we once lived. The not-always-welcome-truth of the matter though is that many of us are already doing everything we can to fight our disease. It’s not easy to accept that multiple sclerosis has no cure. It’s also not easy to accept that you may be doing everything you can and you’re still not back to your old self. Coming to terms with having an incurable illness is extremely difficult. Accepting that you are doing all you can doesn’t make you a quitter though, it allows you to begin to live.

Are you really doing everything?

I can’t talk about accepting your position until I emphasize that, maybe more than any other disease, multiple sclerosis requires you to do a tremendous amount of work. Are you seeing a knowledgeable enough doctor? Are you maintaining as healthy a diet as possible? Are you getting some form of exercise? Have you seen speech, occupational, and/or physical therapists? Are you taking care of your mental health? Treating multiple sclerosis requires much more than a great neurologist. Even if you are taking a disease-modifying medication and you haven’t had an exacerbation in a long time, you may still not be doing enough. There may still be room for improvement. There is a lot you can do to fight this disease, it really is a pain in the ass. I have to be blunt here: honestly, if you aren’t a little frustrated by the number of appointments and things you have to do to fight this disease, then you aren’t fighting it as best as you could be.

Doing all that? Good, you’re probably still frustrated

If you are doing everything I just talked about, good for you, it’s not easy. The sad thing about MS is that you can still be doing everything right, everything you possibly can, to fight the disease and still feel like you’re losing. You may go to physical therapy and use a cane regularly, but you still fall. You can go to speech therapy and still slur your words. You can take your medication and still relapse. All of this is extremely frustrating. Everything we can do to treat MS and its symptoms will still never makes the disease go away. You can do everything right and still not feel great. That can be incredibly demoralizing. It can also make you unappreciative of the efforts you are making. Whether it’s always noticeable or not, your medication does slow the disease, speech therapy does help you get words out, and a cane does make walking easier. It’s hard to really appreciate how helpful your efforts are if your expectations aren’t realistic.

Great expectations

Life with MS is a delicate balance when it comes to expectations. You should always be fighting and advocating for yourself. Always be ready to try a new doctor or a new treatment, but it’s important to appreciate the successes that you have too. It’s easy to say, “Well, MS doesn’t have me and I won’t stop till I’m cured.” How realistic is that though? It’s OK to have MS and your life not be the same as it was. It’s OK for life to change. It’s OK to adapt. If you are honestly doing all you can to fight the good fight, then it’s OK to accept that your life is different now. Whether they have a chronic illness or not, most people’s lives don’t go the way they expected, that’s just how life works. Having MS doesn’t have to be the worst thing in the world.

You can still live a great life

Coming to terms with the fact that you are doing all you can but you aren’t what you once were can be an incredibly important moment. You can have MS and still live a great life. There can be no cure and you can still live a great life. Sometimes, we have to set the proper expectations and go from there. We have to accept that maybe our lives won’t ever be the same. Always remember though, that different isn’t the same as bad. When you’re doing all you can, and can accept that, you can truly begin to live.

Thanks for reading!

Devin

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mascha Member
Another great article. This one gets to me a bit more, maybe because I’ve been struggling with this lately. I have to keep reminding myself what my neurologist told me “ whatever you are doing keep it up”. But sometimes i think what’s the point having that freshly made juice because i feel shit anyway. When friends or people say “ try this” I have now become blunt. I tell them if it’s that easy getting better by not eating chocolate we would all be healthy again. Thanks for your great writing!!!
1. Devin Garlit Moderator
 Thanks so much <inline-mention user-id="4043500" username="mascha"/> ! I think so many of us are tired of hearing about all of those "get healthy quick" schemes!
Therry Neilsen Moderator & Contributor
I was about to write "Am i the only person with MS who is NOT hoping for a cure?" when I realized that you're never the only person with MS who is experiencing one particular anything. There are at least a million people in the United States with this blasted disease, and I'm sorry, but even if you're Devin Garlit, you aren't unique. Somebody else in this community has accepted that a cure may be possible, remyelinization and returning one's brain to its unscarred full function may be possible, but frankly, I've lived with this disease for over forty years, and it's horrible, but it's not so bad that I can't keep living with it for another twenty years. I hope for more effective treatment for pain and disability and the thousand natural shocks the flesh is heir to, but a cure? nah. Someday maybe, but not for me. Thanks for sharing your thoughts as always, Devin.
mstini2013 Member
You couldn't be more right Devin. I was pretty depressed in the beginning, 6 years ago. When I finally got diagnosed, I was really sick, and the iv steroids made me even more sick.. my emotions were on a roller coaster.One minute I'd be saying, "I'm gonna beat this and be okay." The next minute I'd be saying " Ugh, I hate MS!! I'm never gonna have a life to enjoy again." I would sit around, cry, snap at every one over the most minute thing for no reason. I was sinking into my own misery but doing nothing to make it better. Then one day I woke up, said to myself, "It's a Brand New Day, and time to start picking up the shattered pieces of my then broken life. So I started heavily researching everything I could about MS. I joined a support group that my daughter found for me. i researched nutritional information and changed how and what I was eating. I set my alarm for 8am every morning and got myself a bedtime routine of 9pm . That wS hard, because I've always been a night owl, working midnight shift, 12hrs or more with the majority of my Nursing career. I am not into an exercise routine, ive never had to be because I had always been pretty active and fit. Im mot gonna lie, I could lose a little. But. i work in my yard when I can, we camp most of the spring summer and fall, so i do alot of swimming (an indoor pool at our camping resort). I do alot of walking at the campground too. At home I keep busy with my crafts, puzzles, games etc. My husband keeps me busy helping hi. too when i can. right now I'm in NC visiting my daughter and her family, helping out indefinitely because my son inlaw was recently diagnosed with leukemia. So, running around after my 2 year old grandson is challenging but fun and its good for me, and him too. All these things have made such a difference in mine besides the fact that I have an amazing neurologist that I have tremendous faith in. Life is only going to be as good as I make it. It's not perfect, and in no way does it compare to my life before my MS diagnosis, but ive accepted my limitations and have for the most part learned to work around them and despite my circumstances.I also have an amazing husband, 4 amazing daughters and 6 grandchildren. My older grandkids already understand my limitations to some extent at 13, 10 and 8. im sure the others will in time too. I have my best friend and her family as well, and a few other really great friends. i lean on them when i need to because i have too sometimes. I cant express the importance of a good support system. I. still me despite MS, sometimes it controls me, but through knowledge and changes, I feel more in control of myself because I do know that doing that im doing the best I can for myself. There are days when I have to succumb to its control. It's easier to give in when I need to if I look at it as being my choice to give in on those days because the choice to push through means that I will pay a hefty price eventually. I'd rather give in when I need to so im only put out for a day, two days eve. three sometimes. Never Give Up On Yourself. We are much stronger than we think most of ths time. Devin, I love your posts, they too helped me get a new perspective at times!! Happy Fall!!!
1. Devin Garlit Moderator
 Thanks so much <inline-mention user-id="4063223" username="mstini2013"/> , much appreciated!
shellbell829 Member
I have had type 1 diabetes for 43 years. I was diagnosed with PPMS in 2015. I wake up each morning not knowing which disease is going to act up. Both of my diseases are controlled to a degree. However neither one has a cure.
1. Devin Garlit Moderator
 Thanks for sharing <inline-mention user-id="4082878" username="shellbell829"/> , unfortunately, there are a lot of people who face more than one chronic illness. You folks are incredibly strong people!
not found
First time reading this one but it is timely all the same. I'm doing all I know to do and am frustrated that I don't have more of those vibrant days when I can deny even having MS. Gradually, I'm learning how to have different expectations for myself in a given day. For example, breaking a home project into even smaller pieces so that I'm grateful for completing small things while remembering that concentrating on my health, taking care of the temple of this soul, is the most important thing. Shifting expectations and purpose are so hard, but your article reminded me that I'm not alone and I'm doing my best. Thank you, Devin.
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="4099145" username="SharonW27"/> ! You are definitely not alone! Shifting expectations is tough, I still struggle often. I like to say that my scale of accomplishments has slid (<a href='https://multiplesclerosis.net/living-with-ms/sliding-scale-accomplishments' target='_blank'>https://multiplesclerosis.net/living-with-ms/sliding-scale-accomplishments/</a>) but that I still do accomplish a lot, for my current situation.