ChristinaLPro

In the exact same boat. I was just diagnosed after being sick for a couple years. Having to try different exercises, different medications and meet a few specialists to see which one will be able to help me first (cause the waiting times are crazy long) is so hard. I’m kind of the opposite as you and still in the “rest as much as possible” faze. I hate using my wheelchair and I try to walk or run as much as possible; except it backfires and that’s when I have a fainting spell or severe pain/nausea. As hard as it is, I think both of us need to try our best to listen to the professionals, after all they’re just trying to help us. Once you get comfortable doing the exercises, I’m sure it will become a second nature habit and you won’t dislike it so much. Being told by Drs and your body what you can and cannot do is definitely the hardest part of it all. It’s like we don’t have our own mind to make our own decisions all the time anymore. Just keep reminding yourself, everyone is trying to help you be the best you and trying to take away your pain. Good luck!

I appreciate all these tips! I’m definitely in the “accepting my illness” phase, but glad to see everyone’s gone through it and it too will pass! My PCP did mention getting a motorized scooter and a walker for around the house. Once I get those I think I’ll feel better gaining some independence back. I also love the idea of learning how to bike again. That sounds amazing and I’m so glad to hear you’re doing that! Thank you all💗

Yes, I am lucky that I live in MA and we have the best doctors in the country only 4 hrs away and insurance doesn’t cover everything, but I am beyond blessed with family and friends who have all nonstop helped me out...plus I had a lawyer help me with disability so that also helps pay for a lot. It’s crazy how expensive ambulance rides and hospital stays have been. P8D, I’m glad to see I’m on the right track cause I did all that! The tilt table test and 30 day heart monitor (which ended up being 90 days for terrible circumstances, boy was that rough) are what got my primary care and local cardiologist agree on giving me the referral to Boston. Self care at home, as I’m sure you all know, work some days and don’t work others unfortunately. The longest I’ve gone without a bad pain flare up day/Syncope spell is 13 days and sometimes it happens multiple times a day. So I never really know how it’s gunna go, but I’m still fighting! So there’s that!

Thank you!!! That’s a really great point, not thinking of what I can’t do and focusing on what I can do. Definitely an adjustment period, but if you can do it so can I!

I have been severely sick for almost 2 years now. The worst of my symptoms is the Syncope. My heart-rate gets so high that it causes me to collapse, the last hospital stay was 5 days cause it was consistently between 220-270 and they kept saying "they were worried about cardiac arrest". I have read through a bunch of these discussions and it's nice to see I am not as alone as I thought. I have every symptom I have seen you guys mention, I have been wheelchair bound when I have to go to the dr or bedrest bound at home for almost a year. Misdiagnosis after misdiagnosis and finally I had a dr suggest it being a type of dysautonomia. There's only 2 specialists in my state who know all about these and of course I cannot be seen for another 8 months. I guess the only question I have for you guys is how do you stay so positive in these comments and just in life in general. I do have my good days, but being told by the neurologist/cardiologist's nurse that the next available appt to even just get the testing done is 8 months out was a major disappointment. Everyone always tells me- everything happens for a reason or it could always be worse and while I know that and I agree with that, its hard. When you cant even walk 10 feet without collapsing and passing out and you're watching everyone else's life go on, its hard to be so happy and bubbly all the time.