Have you met anyone else with your Illness? Did it help?
Sorry again, today this will be short and (hopefully) sweet. My anxiety it’s really bad at night right now so I’m not really sleeping. It’ll be fine when our finances are sorted again, but until then I’ll just have to get on with it. So excuse me if none of this makes sense, brain fog is a bitch sometimes.
I have managed to meet a few other people with ME and fibro over the years and yes it was helpful. This is physically, however I think the most support and help came from an online community I joined when I first got sick. AYME (Association of Young People with ME) literally was a godsend, it helped support me through the diagnosis, advised me on pacing and provided me with a community of people who understood exactly how I felt and what I faced. Having ME at anytime it’s hard by I truly believe having developing it as a teenager is particularly difficult, as you miss out on being “young” in the same way that teenage parents often do. I could ask questions on community boards and get information and support.
I also have a lot of friends with invisible chronic illnesses that have similar symptoms and affect their lives in similar ways, illnesses like lupus. My best friend has AS as well as fibro so we can support and understand each other. Spoonie friends are awesome, not because others don’t care, but because other spoonies have an extensive knowledge of how it affects you, what cannot be seen and exactly what payback actually is. They can sympathise on your bad days, congratulate you on your better days (days that perhaps non-spoonies wouldn’t see as much of an achievement) and understand if you go for weeks without being able to speak to them.
I think support from others with chronic illnesses is really important and help for. My spoonie support network has made a massive difference in my life with my chronic collection. Spoonie friends are awesome friends!