Just had a quick read. I think itâs a good article.
Iâm sure most of us fall into some of the psychological traps it describes. This one is all too familiar: âbeware of the belief that you must be doing something wrong if youâre still sick.â
True, perhaps underlying the presumption , or illusion, that if on the other hand we do something right, then we will be able to dominate our bodies and the disease.
The best thing I did was âseek out other who get itâ! As in you lot. Thatâs for sure.
OMG , this said exactly how I feel so often in words I could never have composed! I am often extremely self critical and have spent ridiculous amounts of time trying to figure out how to control symptoms and reduce disease involvement (flares and frustrations) always blaming myself for being âless thanâ. Thanks for posting this.
So true, Poo. Donât know what I would have done without you lot, a hug
A good read. I did skim it. I plan on coming back to read some more. Has anyone read a book about chronic pain or illness that was helpful?
I actually did a course on chronic pain that was really helpful. A great explanation of why NOT to push through your pain threshold, but just up to it, consistently, amongst other things.
Unfortunately I havenât seen an easily accessible article or book that encompassed it all. Not sure if you might have online courses available?
A very insightful article.
The best thing I did at the time I was diagnosed was turn to psychotherapy. It helped me understand me better and therefore what strengths and weaknesses I had in just âdealingâ with something that was never going to go away. And something that would always be something of a rollercoaster ride too. It helped me source notions of emotional resilience instead of what used to be my âtotal fightâ reaction to such things.
Hence now Iâve become much more of a âcarpe diemâ person as in âseize the dayâ. I seek to rack up good days, and wait out the bad ones. I donât by any stretch of the imagination have it all worked out, but I certainly âdealâ much better with it now. I do think each of us though are different and what works for me might not work for anyone else. But each of us in our way can find a way to âdealâ thatâs coherently positive and life enhancing too.
And I keep having rollercoaster stuff sadly (especially right now) but knowing that I do have sources of resilience helps that infinitely.
Iâm lucky though that Iâd never think to âpush through my pain thresholdâ but Iâve certainly seen the benefits of just easy going and persistent exercise to keep everything going, not just physically but mentally too. Being physically fit enough to walk my dog and get out in proper nature just about every day, keeps me totally grounded. On the bad days I sit in my garden and watch the birds that I feed daily so the number of different species and sheer volume of them too is a wonder to behold.
However I also work full time now obviously from home. Itâs an intellectually challenging role and that helps enormously as well. And not just income wise. It conveys necessary feelings of self worth too. All these things help keep the balance for me at any rate and the provide the resilience necessary to just keep on keeping on.
Iâm a seeker of coherent medical help as well. Iâm truly hard on my doctors and demand their best at all times. Relentlessly.
You need to be a guru!
I canât wait for cooler temps in the evening here in Texas. Once that happens I will walk for hours outside. Also starting my fall garden is top on the list, if my hands will keep in line. I am a push through it and get it done kind of person and I know now that is not going to keep me happy and healthy the rest of my life. I need to take a step back and make some changes. I hate being idle. Busy all the time, but I canât continue like this. Time for some bird watching for sure!
âI like the part about seeking out friends and family that understandâŚâ What planet do they live on? 
That would be nice to have someone like that, at least we have support groups!
Good article, been through most of those moods in the last 30 years of chronic pain, the hardest part is wanting to do something, and to be stuck in bed with chronic fatigue, I can push through the pain, but the fatigue knocks me off my feet.
And of course no one around you gets what is going on, it is just âare you still sick?â âCome on, lets go for a hike!â⌠I am like âsorry have to pass, I canât walk right no, literallyâŚâ
That made me laugh out loud, Iâd make a lousy guru. Far too opinionated and far too much fiesty Irish blood in me. None of which I tame very well. But for now I can and do deal with things an awful lot better than I used to. Iâll take that every day.
So true, Jon . The fatigueâs a real bummer, so is accusations of being a hypocondriac, bluffer, lazy, etc. Please take care of yourself, you should soon start to feel a little better thanks to the Cosentyx , let us knowâŚ
I agree @Jon_sparky, about having family that understands. The only one I have is my grand mother and sometimes my grandfather but they are in their 80s! We share similar pain related issues and we gab about our aches and pains. Itâs good to talk to someone about it but they are 82/85 and I am 38! Sometimes I makes me feel a bit worse knowing that I can only relate to them.
@Poo_therapy Iâm sure there are red blooded Irish gurus out there! 
I am also way too opinionated and my face tells you everything I am thinking. Years if deep breathing have helped me keep my thoughts to myself but my husband still knows what I am thinking.
@letizia oh yes, the hypochondriac⌠âOh, something else hurts now?â Yes!!! There is always something hurting. That is why itâs called chronic.
Ahe yes, the ânot this again?â Line, followed by a eyeroll.
person I used to work with give me a helpful suggestion, he said âwhy donât you just die?â Had to ask him to qualify that statement, âwhat like commit suicide?â He said, â no just die naturallyâ, I thought for a second and told him, âum, I think we all are doing that, but it takes time!â
I guess he thought the expensive biologics were keeping us alive? He was trying to save money.
Conclusion: People are weird.
Tough line, Jon, glad you beat him to it. Wish I could also be living in nature as you are doing, camping out in the wilderness. Keep on thinking about going to live on a sailing boat moored in the harbour, one day , in the mean time trying to balance between staying home to shield and going out occasionally in the depth of night like a burglar to meet less crowds, beâ safe,
Well thatâs awful! I would never tell someone to âgo dieâ sick or not. People are mostly selfish and insensitive.
I also sneak around at night when the sun goes down, to get some exercise, but after seeing lions and snakes, a late-night walk probably is not wise for me!
Jon, please take as many pictures as you can! Your whereabouts remind me of my grandfatherâs place in Tucson, Arizona. We went for visit when I was about 13, and one day, ( I was wearing a jeans below the knees length skirt, canvas tennis shoes with no or ankle socks, ) we went outside in the desert, and after posing for a picture I heard very close by the rattle of a rattlesnakeâŚ