Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Its difficult to explain any disease to someone who doesnt have it, but its especially challenging to explain what its like to live with a disease that has symptoms that are not always visible on the outside.
Family and friends think I look normal and therefore do not understand my limitations. I am finding it upsetting and don't want to burden my children too much with explanations but it is more difficult to cope with family gatherings and expectations.
Easter has been especially difficult for me this year and I left our usual family gathering which upset many people including my husband and children. They were all angry at me but I knew I had to look after myself.
They don't really want to know details of how I am and expect me to do normal things.
I am at home now alone and very sad.
How do you explain things to your family without upsetting them too much?
Family and friends think I look normal and therefore do not understand my limitations. I am finding it upsetting and don't want to burden my children too much with explanations but it is more difficult to cope with family gatherings and expectations.
Easter has been especially difficult for me this year and I left our usual family gathering which upset many people including my husband and children. They were all angry at me but I knew I had to look after myself.
They don't really want to know details of how I am and expect me to do normal things.
I am at home now alone and very sad.
How do you explain things to your family without upsetting them too much?
I can't imagine what it would be like if I were married or with childern. I wish I could email my shoulder to you to get a good cry on.
Please dont let it get you down.
I'm planning to go to Washington DC in June with my son for his graduation trip. My sister and her husband are meeting us there. Trying to get them to understand my limits is really hard. Earlier this week, she said I'm just going to have to spend all week in a wheelchair. But I don't think that is quite right. I will need one for the museums and such but there are some things I can do without one. And anyone in a wheelchair knows the challenges of trying to get around in one. It is pretty frustrating.
I think it is important to continue to help people understand. I've started sharing that it is related to Muscular Dystrophy and it is every bit as serious. It also helps because my Mother has gone to the TMA conferences with me so she has seen the 300-400 others just like me. Not everyone can go to the TMA but don't hesitate to encourage people to do their own "google search" to educate themselves.
Keep standing up for yourself. Set your limits and realize they can change from one day to another. I'm sorry you had a tough time today. Try to think kind thoughts and get feeling better quickly!
I figure if people see that I do not feel well, then they get the point. I try to have a good mental attitude with any headache. In a social situation that requires a lot of intensity and stamina, I will just tell people that I am not feeling well, my head is not right so I will need to be quiet and maybe lay down.
I always let the rheumy and/or cardiologist know of any particular situation where I felt like no stamina to handle or endure too.
Best Wishes
Read thru that with your husband.,,,
Just read thru it with my Mom and it might have solve some of the problems I have needing to repeatedly give excuses and explanations on why I cant or don't want to do something my parents want me to do with them. A Vuseful read...