Outlook

[Dawn DeBois]

Hi Ashley,

I absolutely believe that outlook plays a big role in helping to manage our LEMS symptoms. I recall within the first year of diagnosis, when my strength had returned via 3,4-DAP and Mestinon, I suddenly found my symptoms needing me to take my meds on a shorter time interval than usual. I was stressed about a relationship in my life an d found my dry mouth and the need to take my meds was shortened to just under 3 hours instead of the usual 4-5 hours during the day.  I asked my neurologist about it, including the part about my being stressed when this happened and she wasn’t surprised. She told me this happens all the time with ALS, Parkinsons and MS patients- when they are stressed their meds don’t last as long. The body processes them faster.

Since that conversation I’ve been more keenly aware of how much stress I carry. When stressed, I try to exercise, or blast DISCO music- who can be sad listening to that?), I write in my gratitude journal, get outside, or go find some live music someplace to escape to. If my symptoms are flaring- I try not to stress about it, and just rest and recover, knowing that is what my body needs and refusing to feel guilty about it.

I’ve also learned to also limit how much “daily news” I pay attention to because that can be a constant stressor with the advent of 24 hour news channels.

Lastly, I always remember that there are rare disease patients out there without treatments, without the ability for symptoms to be managed, and who face a dire prognosis because their disease is progressive. I feel blessed every day that if I had to have a rare disease diagnosis, God gave me LEMS. (For patients reading this who may still be in the frustrated mode with their disease diagnosis, if your symptoms aren’t controlled yet, I hear you and pray that the right treatment combination is found for you soon so that you can live your best LEMS life! )

[Ashley]

Dawn,

I couldn’t agree more with your first paragraph! Stress definitely takes a big toll on LEMS and chronic illness. I have found myself more stressed than usual this last month with work being short staffed, a shoulder injury that may require surgery, avoiding conflict with my roommate who is not the cleanest person, and learning and adjusting to being a home owner. Being a home owner has been a big responsibility and I have found myself needed a lot of help from others and wasn’t expecting to need so much help. This morning I got a letter from my HOA regarding some things that need to be taken care of and I am having to search for someone to fix them because I am unable to do so, especially with my shoulder. I have found myself extremely tired lately and spent most of yesterday sleeping. It’s interesting how our bodies handle stress, even things we thought were not causing us stress can affect our bodies and start a slow storm of symptoms if we are not careful. I’m still learning the balance of my body and sometimes push myself too hard.

 

I have been working on painting two chairs for my dining room table this morning as that is a big stress reliever to me, as well as listening to music. When its nice enough, I really love sitting in my backyard or working on my flower beds so I am really looking forward to warmer months.

I also have to limit the daily news I listen to. I am an empath, so I feel feelings very deeply and hearing sad news all day takes a large toll on me and can bring me to a depression.

You are completely right! We do have to remember to stay humble and thankful for how lucky we are. I feel lucky to have a diagnosis, a treatment that works for me, and being healthy enough to juggle multiple things including a career. I also pray that we are able to raise awareness for LEMS so other patients can have outcomes like us and can receive the treatment they need. I also pray that they will be able to receive the medical treatment they need and hopefully can do so without a financial strain!