... since I have had a life.
Okay, since it has felt like I've had a life.
I can say that as a hermit. And the lesson would be for people with a chronic illness is to not let yourself become a hermit. Unfortunately it happens by inches. I like to say I live by inches because pain makes you move so slowly literally and in thought. It takes life by inches as well. Such that while you realize you make compromises in order to cope you do not exactly realize the magnitude of the lost right away.
For example, you realize it is insanely hard to function at work. It takes a great deal of energy and pain tolerance to endure. Which means you are not capable of anything on work days other than work. It also means weekends are often used for recuperation. If you do anything else it has to be planned. Never spontaneous. Never something that will take too much energy or require recovery... because that will leave you in a deficient for the work week. What this means is that my social life which had been healthy, if in moderation, in my twenties, became sporadic in my late twenties and then next to nothing in my early thirties and then pretty much nothing in my mid-thirties. Partly because I was working full time and partly because pain increased over time. So friends diminished. And even activities with my spouse outside of the house diminished.
That is when I knew my life was more of an existence. That I was really just surviving pain day to day rather than living. However, there really was no way out of this cycle. No way to improve on the situation when I was exhausted by the daily battle and had no pain management and no doctor willing to help with pain management. So no life.
So my recommendation is never let it get to that point. Hold onto those friends. Force yourself to go out and do something, even if it is a small coffee break with a friend, once a week. It is very good for emotional and mental wellbeing. But good to have peeps to do it with. Or family. I replaced my social life with online friends. And I definitely socialized with family. And those both count. However, I still say keep friends who understand your limitations. Also you can just Be out and about around people. I was told to just go out and sit in cafes to be around people and out of the house... even that would be beneficial.
Anyway, things have changed a little for me in the last year because I have not been working. It makes a large impact to get out of that survival mode. You can make some changes because of that very fact. I have been able to co for coffee with my mom more often. I have been able to make new acquaintances and go play cards once every couple of weeks consistently. I went on a short trip with my spouse into the mountains as well last year. Short but very pleasant, even if migraines were present and accounted for. Either way it makes an impact on mood and your reality to get out of that survival mode and lower the pain a fraction. Be able to sleep a little more.
Yet not working makes you feel like you are on pause from life. I do more things for certain than I was even capable of before. I feel better than I have in years and years. Yet I feel more isolated and I feel like I am paused. Waiting. I also feel like there are possibilities. And possibilities were things I did not have before. I was locked in this losing pain battle and hope ceased to exist in that equation. At least I have possibilities I can try to manifest. That I have time and energy to try and manifest.
The hope being... more Life. The hope is always that with chronic pain we can decease the pain, decrease suffering and increase the quality of life. What sort of compromises we have to make for those ends is the question. That I would ever be off work this long was never something I had ever considered. That it was necessary was quite obvious. I would like to think there are possibilities for some sort of flexible work in my future. I like to keep my mind occupied and I think that is something we can all relate to. This struggle with what to do when we cannot do what we did. I do have my writing which does keep sane at least.
I still think this chronic pain lifestyle is a life by inches. Just crawling along with the pain. I just think it is easier to stay sane when not working. And I hope for the possibility to manage the pain such that it will allow for me to work without going insane. Is that too much to ask for? Maybe.