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Is this thing on?
Hey all!
I couldn’t think of a title for this topic, so I chose something humorous to me. 🙂
Sorry I haven’t been as responsive as I normally am this week. The truth is right now I’m really struggling with my depression.
I was just recovering and beginning to get used to the new “normal” life COVID has given us, and things in the past couple of weeks have just been draining.
I’m being honest and sharing my feelings with you, because I bet many of you, like me, are struggling right now as well.
I have a lot of fears about the future and feelings of sadness because just when the world was getting back to normal, we are going to be facing another shutdown. A lot has happened this week in my personal life that has caused me to turn inward, I tend to do that to attempt to process my feelings.
This week has been emotional for me, I know we are all going through it. I’m here for all of you if you ever need to chat, or someone to vent to, know you can rely on me.
I’m so thankful for this group because it’s given me a group of people who understand “Life with LEMS” and given me a very close, fatherly relationship (that I’ve never had before) with @pricewool
I just want you to know that I’m thankful that each and every one of you continues to fight and push through the obstacles life challenges us with, even when it seems like there’s no light to be found. You matter and you are seen here.
I will be making another post this weekend with some coping tips to help myself and any of you who need them.
Thanks for being a part of our community!
Have a great and restful weekend!
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4 Replies
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Ashley, I hate that you are going through some rough patches in your life right now and it helps to share it with other like-minded folks. For the last 6 months, I have spent most of my time trying to get adjusted on meds so that I could be able to just do stuff…even as simple as carrying my own cup of coffee from my kitchen to my dining room table. Before that I was on no medication and spent my time either sitting in a chair or in bed. Once our summer began, I realized very quickly that I couldn’t be in the heat because it was paralyzing to me. I felt like a prisoner in my own home. I’m very blessed though because I have a huge support system from my church and my wonderful husband and adult children.
Now that I’m in my second month of Firdapse, I can tolerate the heat a little better and the last 2 days have been very good for me. It’s exciting to be able to get back to a little of what I could do before all of this happened.
If I could say what has helped me keep my sanity in all of this (LEMS and Covid up and down rollercoaster) is my faith and keeping my expectations realistic. I can’t say that I get depressed, but I do get discouraged sometimes. I look at the covid situation and potential lockdowns the same as I look at my LEMS…I take one day at a time and do what I can. I don’t make plans because I don’t know what tomorrow is going to bring. I try to enjoy every minute of each day. I do what I know I can do for the sense of accomplishment but I also try to not stagnate. I make every effort to push myself to do what I wasn’t able to do yesterday. If I’m successful, that’s great! If not, I’ll try again tomorrow.
Ashley, I don’t know if you are a woman of faith, but It has been my stronghold through all of this. For a long time, my eyes were messed up which interfered with reading and doing studies. For me, that was my most distressing symptom. With my most recent increase in dosage, my eyes have begun to improve and that to me is a true blessing. I am able to read again and do daily devotionals and studies. I don’t fear the unknown. I know that God’s got this! Each of us has to find our own way of dealing with everything that is going on in our life and in the world around us. I pray that you stay positive and keep putting one foot in front of the other. Don’t allow all this gunk to get you down. -
Mary
You have a wonderful message for all of us. Thank you so much for that post. I too had a very bad time last week with reactions to my IVIG, doing more than usual, and some extra testing. Your post helps me to keep my perspective. As you said, take everything one day at a time. We must give ourselves the grace to have bad days and remember that each day is a new beginning.
And Ashley, you hang in there, the best is yet to come. You are stronger than you know. You can do more than you would ever think possible. God has a plan for your life.
Thanks again, Joyce Crawford
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@asheleygregory. Thank you so much for sharing! yes we all go through difficult and stressful bumps in the road but it takes strength and courage to share your struggles. And for that I thank you for sharing and expressing your struggles. We are here for you to listen and help!!! Thinking of you!!! your LEM’s support and cheerleader for team Ashley!!!
Tescha
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@mhudakcollins
Thank you for your support! I’m sorry that you are still struggling to find a regimen to get you back to normal, but it sounds like you are getting closer! I’m learning to take things a day at a time, but it is very hard for me as I am a very future oriented person. I’m so happy to hear that your eye problem is resolving! I have struggled with my faith for most of my life, so I am not as strong as you in that sector of life. Glad to hear from you and thank you again for your support! I pray you continue to make steps towards improvement!
@joyce275
I agree we all need to focus on taking one day at a time and not sweating the small stuff. I hope the best is yet to come for all of us!
@tcarr20
Thank you so much for your support and kind words! <3
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