Newly diagnosed
Hi I’m newly diagnosed early this year so much has changed just got a letter for a appointment for self catheterisation I’ve gone from being active to being not so very active. Does it get worse as time goes on?
It depends on the person, for me this time last year I couldn’t walk, speak, eat, see or hear etc but when I went through treatment and steroids i’m much better. you learn to live with it too.
Do you feel everyday is different? With me sometimes I wake feeling 100% then as the day goes on I have no energy left at all. It’s played a big impact on my relationship with my husband emotionally and physically. What changes have you had to deal with?
Oh hun i’ve had to deal with loads of changes. I feel different everyday, one day I could feel on top of the world & the next I'm exhausted and barely able to get out of bed. I was diagnosed at 19 so it’s been almost a year with this disease, I gained a bunch of weight because of medication which lowered my self-esteem. I stayed home for months because I was too embarassed. My relationships with people fell apart because they chose not to understand the condition which felt really bad then but now i’m glad that happened because my life is peaceful without worrying about those type of people. Physically i’m almost always in pain so i’ve had to learn how to cope with it but I also had to learn when to stop doing things because I can’t do as much as I could before my attack. And don’t beat yourself up about not keeping up with others because they don’t have our condition! I’m sure if you have a honest and open conversation with your husband he would understand how much this condition changes us. As a person, i’m completely different than I was pre-NMOSD.
I know what you mean about the weight gain it doesn’t help that everyone has to make comments about it but it’s like you said they don’t have the condition so they don’t know how it feels and it’s hard to explain it to them also. Sometimes I feel like I’m in this bubble all by myself I don’t want my kids to see me upset or tearful or even struggling I always show them that I’m fine it’s fine and that I’m ok. Did you have to self catheterise yourself I’ve been told mine is due to the damage. Where are you from?
No i didn’t but the nurses said that is an option in the future if the retention gets worse. they also said it’s not as bad as it seems to self catheterise. i’m from scotland 😊
