So, once again this week, my apologies for still not posting the promised follow-up part 2 to my part 1 post,
Challenges in Diagnosing Orthostatic Intolerance, on challenges in treating OI. It's coming, but I have still been badly crashed - about 3 weeks now. This is all very puzzling to me because although weeks-long (or months-long) crashes used to be common for me, especially in fall and winter when
infections are all around, triggering my immune system to go even more out of control than usual,
with treatments, these kinds of crashes (all kinds, actually) have become quite rare. I really can't remember the last time I was down for this long. I am heading to my mom's this week (fingers crossed that I feel well
enough to manage it), so I hope to finally get that part 2 post on OI
written after I get back.
I have been trying hard to listen to my body (a challenge because I'm out of practice!) and resting. I spent much of my week horizontal and just couldn't handle complicated writing projects (luckily, I was caught up on my paid freelance work).
So, here is a link to an article I wrote for ProHealth that was recently published:
Has Chronic Illness Turned Me Into an Introvert? (read the full article at the link). This one is very relevant to me with the way I've been feeling - I have been
needing my quiet alone time even more than usual!
I'd love to hear your experiences. Do you now crave quiet solitude and maybe feel a bit anti-social? Do you feel like chronic illness has changed you in any way?
I know I ramble to try to say so much in the short space between long silences and illness. Please bear with me, perhaps we could fish a salmon from this river. With the hubbys TBI he became so physical social contact adverse (sound, travelling needing to focus and concentrate for more than an hr) and I would leap at wanting to see friends and family but often be too unwell even to go outside. Often we would both falter when we tried for time together with family as illness took over as the short spaces became shorter and further apart.
ReplyDeleteIsolation for many people can be extremely hard I have seen and read research on case studies and the long term health effects. So we do what we can, when we can and try not to regret the other times. We have a pet cat who is a great help to soothe moments of terrible isolation and each other. Although as hubby is still recovering from his brain injury slowly and me with many migraines we can still drive each other up the wall with the typical things.
For hubby he has found an MMO community group forum via slack as an option to engage, (using a corporate chat client to talk among people online for a computer and playstation game Elder scrolls, fantasy with crafting). A lot of the people on his MMO server are American, also recovering or families spending time together, mostly middle aged, professionals. There are a lot of trolls and terrible people online but the group has a code of conduct so bans anyone in the group too racist, abusive, threatening etc. However in a recent event one of the group leads had his family threatened on the real world side for a market dispute with other groups. A mob wanted to force out smaller sellers so they could have a monopoly so would use anti competitive and threatening practices. The forum lead had to bow out from the game just to clear his head. Mental health being more important and he needed a breather before considering coming back. Even at arms length sometimes wankers can still break into the walled gardens and wreck it.
I appreciate your articles and read in moments when the pain recedes a bit and the vision clears. When I come right again I want to be able to have more dinners with friends and family instead of bimonthly, even when some are just next door.
Facebook is too hard though. Everyone's life career continues. With one upmanship on job news, trips, kids, events. Stuck alone in disability cut off from life makes reading it very difficult and finding solace harder to seek. People find the realities of disability more depressing than I do so they avoid seeing people with it. A few friends with disability understand though and we keep infrequent in touch. Facebook is also scanned by employers, banks, insurers, unknown third parties which can critically affect our ability to get a loan for housing, medical care, return to work, business and contracts for hubby. Disability is still discriminated against here (for work, access and around the community, the council even plans to rip out local disability public parking). Being open about it would be a huge step and detrimental. Not to mention the family drama where a message to friends and family may include the wrong sides of the family.
Illness prevents even phone use, emails and regular chat for me. Hard to maintain a shadow of the communication of before. Lots of media helps. So long and thanks for all the fish.
Thanks so much for sharing your thoughts and experiences - sounds like a difficult position to be in, with both of you disabled. You can always stop by here to "talk" to someone who gets it!
DeleteI know you said you avoid mainstream Facebook but there are groups and pages just for us :) This blog has a FB page:
https://www.facebook.com/livewithmecfs
You can even join FB with a pseudonym, like Blue Lantern, and a fake birthdate (just make sure it puts you at over 13 years old! lol) Lots of groups for people with ME/CFS, too - it can really help to have a place to "go" where everyone gets it.
Another community exists on Twitter. I am @livewithmecfs there.