“Well yesterday you were running” “Last week you went to the gym” “Last month you went on vacation” . . it always feels like I’m just explaining things over and over again. I have a dynamic disability/invisible illness. I’m not exactly sure what I have yet. I’m seeing a rheumatologist. Currently all I know is they believe it’s polymyositis but still need to do a biopsy. My CK levels every month or two will get up to 30,000 for no reason at all. I don’t exercise a lot but I do the regular amount I don’t take any drugs, etc. etc. I’ve started telling my friends and family about these things and my friends of course have been very helpful and understanding but my family doesn’t understand how one day I’m fine in the next day I’m in the hospital kind of thing. which I understand it’s confusing but every time I explain it, they think I’m holding something back or lying. It doesn’t help that I’m only 20 years old so very few adults believe that I actually have a problem. I’ve had to take on a completely sedentary lifestyle because it seems doing more than 30 minutes of exercise per day has made my CK go up. I’ve had to make so many lifestyle choices and while I do have supporters, I just can’t stand being questioned when this is an actual living hell for me. I was in nursing school which is my greatest passion to become a nurse. I was working as a CNA and I loved being a CNA. I’m young just turned 20 years old so I truly can’t understand how anyone would think that this is what I would want or something I would lie about. Anyways, in all, if you have people in your life who do the same things to you, I totally understand and I see you. This has been the hardest experience of my life so far to know this is only the beginning has truly humbled me. hope you all have a great week
I get it. Around lunchtime today I could barely stand grabbed some lunchable type thing and sat back down. Husband came home asked if I wanted to go out so we did. I was feeling a little better when we went out. Yes I may not have been able to do something but did another but that’s how it goes, I don’t live day to day sometimes it’s hour to hour.
No one wants to be sick. I would give anything to be healthy. If I had a choice between a million dollars and being healthy, I would choose healthy.
I did way too much today and am now paying for it. I will likely be useless tomorrow... I hope not. And so it goes .. round and round.. without stopping.
Same. If I was given the entire world vs. being pain free and healthy, I would choose pain free and healthy
I wouldn't accept all the money in the world if I could have just less pain. Well unless it came with the added benefit of less pain, but Im not greedy!
nobody should question you. ever. keep on
I get you. I’m lucky to have a supportive partner but no one else understands. He sees the pain and its effects. No one seems to get it until it happens to them or someone they are super close to.
Keep your head up and stay on your health. Its a scary thing to think your sick and not know but you scared to find out. My mom did that and paid with her life. If you need us were here for your always, and that goes to all of you out there. Have a great holiday if that is your thing. 💯