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Does Myasthenia gravis cause a loss of your independence?
How has Myasthenia gravis changed how independence and dependence on others look for you? Does MG cause a loss of your independence?
When you started experiencing symptoms of Myasthenia gravis, did you notice any changes in your family dynamics? For instance, did you find yourself relying more on your family members for support or assistance? Or did you or others take on new roles within your family?
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3 Replies
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Hello,
Today is my 24 birthday and I was diagnosed with MG 6 months ago. My life has not been the same since my diagnosis, I was a completely independent person and now I live at home with my parents. I cannot go anywhere on my own because my muscle weakness is so severe. Back in July in the dead of summer my legs completely collapsed, I fell, and scraped the whole right side of my face; I was in the ICU for a week and was on IVIG. I tested positive for AChR and got a CT scan of my chest where the doctor found my abnormal thymus gland. I’m currently waiting for the date for the thymectomy. This whole journey and diagnosis has been so hard and stressful for me to cope with. I feel like my independence was taken away from me, if anyone has any advice or tips on how to cope with this I would appreciate it 🙂
-Karol
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Hey Karol.
I completely get the loss of independence. I’m 40 and am not as independent as I once was. When I got out of the army at 27 I had to move back in with my parents and now my husband is my caregiver.
BUT, at 40, I am a business owner of 2 businesses and help my husband run his; I write for MG News and do more that I did a few years ago. A few key things to keep in mind:
1. You will not be who you once were and it’s OK to grieve the loss of that independence. But know that it’s not a death sentence. You just have to relearn what your current abilities are.
2. Finding the best treatment plan that works for YOU will help regain a lot of that sense of independence. It might take a while (it took me until 2023 to find mine…)There is a lot of trial and error to find what will work. It will be frustrating and aggravating, but keep going.
3. Ask questions and keep trying different things. If something is important enough to you, you will find a way to do it within your abilities.
4. Know your physical limitations and USE THE MOBILITY AIDS! Don’t let pride or ego get in the way of living your life. Use the cane/forearm crutches/wheelchair. I can walk, but knowing that walking long distances will mean I fall. So when doing errands or going places, I use my wheelchair to conserve my strenght.
5. BOUNDARIES. Place boundaries on your R&R (rest and recovery).
I write a lot about finding the balance and sharing all aspects of living with MG, even the taboo and uncomfortable topics like being and finding ways to be intimate with a partner. Check out https://myastheniagravisnews.com/the-whispered-roar-shawna-barnes/ . I think you may find quite a few pieces that may resonate. <3
– Shawna
myastheniagravisnews.com
The Whispered Roar <span>— Shawna Barnes</span> – Myasthenia...
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Also… happy belated birthday 🙂
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