Some of you may know that I have been dealing with chronic migraines for some time now. Short version, I have a migraine every day. This means that I live with a high level of chronic pain. This also means that I spend a lot of time indoors, away from the evil day star, and noise. I cannot exercise (makes the headaches worse). I’ll stop there. There’s a long list of symptoms in addition to pain.
Anyhway, I’m wondering if anyone on the Dope who is Disabled or who lives with Chronic pain can point me towards Forums specifically for those? I have tried to find them on my own. I have mainly gotten a lot of invitations from (I’m sure) perfectly charming young ladies who would like to get to know me better.
If you want to share any advice on how to live with chronic pain/disability, I’m all eyes.
So far, I’ve learned to outsource what I can. I use the telephone when I can. Handle everything online that I can.
I can manage just about one “thing” a day. By that I mean, for example, I can manage to get to the grocery store and get the shopping done. By the end of the trip, I am hanging on by a thread. We moved into this house in August. My one thing for the day might be unpacking a few boxes. People coming over rightfully believe that we just got here.
TL; DR I’m wondering if anyone on the Dope who is Disabled or who lives with Chronic pain can point me towards Forums specifically for those? Tips on living with Chronic Pain/Disability also welcome.
This. I have a combination of very painful spinal stenosis, plus peripheral vascular disease and diabetic neuropathy. After I go grocery shopping, using the cart as a walker, I’m totally wiped out for the rest of the day. Or one day a week I have to get the trash together and schlep it out to the curb. That’s my “task” for that day.
I’m grateful that I’m able to do that much. For six weeks last year I was unable to do anything, even stumble into the kitchen to feed myself.
I’m amazed you were able to move into a new house in your condition. And with migraines, I appreciate the screen name/post combo.
Wish I could be of some help, except to say you’re not alone.
Have you tried looking on reddit? There’s a reddit.com/r/chronicpain community that I joined a while back when my pain was at its worst (I have Trigeminal Neuralgia). The issue I have with all chronic pain communities that I’ve found is the signal to noise ratio. That is, finding the people who are there to discuss how to actually manage life versus those people who are there to vent that no one gets it and why won’t their doctors prescribe narcotics, damn it.
You sound very motivated to be in the former group, so you may find that you have to do some searching. I agree that a condition-specific forum might be your best bet. That’s what I found for the TN.
Good luck. I get migraines monthly. Daily would be awful. I send you my very best wishes.
The move took me months to prep for, with hired help/family help at different times, not the few weeks that it should have. We did finally make it!
lorene I will check out reddit. The disease specific forums I have found so far are the spot-bot nests. Thank you for the suggestion.
nearwildheaven I will discuss the heart issue with my doc. We monitor my heart regularly due to some of the various drugs we have tried over the years. I would hope something would have showed up if there were an issue. I will definitely explicitly ask.
I mean… do you want drugs? Because I can’t imagine there are a lot of “tips” that don’t involve drugs that are going to take the pain away. If you do want them, opiates work extremely well, but have this very pesky downside of being extremely dependence-forming. It’s a personal judgment call whether that price is worth the relief they provide to you. It also depends on what kind of insurance etc. you have - if you have a good doctor and health coverage, you can basically stay high 'til you die. But if you have to take them sporadically with gaps, that means going through withdrawals, which will be even more painful. Again, it’s a cost/benefit analysis that only you personally can determine.
You could also try medical marijuana, if your state has it, as that is far less dependence-forming and withdrawal-creating than opiates.