I've found it impossible to improve on my own no matter how hard I've tried. What are your experiences and thoughts on this?
I have managed it as I live on my own and get absolutely no help from anyone.
I came to the conclusion that I either carried on living this existence I didn't like or I took pacing very seriously to fix my problem.
Lots and lots of things didn't get done, but now I am slowly getting things back in order and life is a million ties better. I do still have bad days but they are fewer and far between and I see some light at the end of the tunnel
Some people get better with help, some do not. Some people get better without help, some do not. We don't know why. Important not to beat yourself up for not getting better, or think that you'd be able to if you just were able to do something differently, when we really don't know that's the case.
Thanks for that, it's been particularly rough lately and I've been losing hope but I don't want to do that. I know how strong I can be and have been through most of this.
Have you got enough money to not be stressed about losing your home etc, because that doesn't help. I'm just wondering how you're so calm to be able to do it.
All those sorts of strain are going to make people's lives more difficult, and worse. Living with serious health problems and poverty will be a real challenge for anyone. While additional hardships can't help, there are plenty of people with financial stability, care from others, etc, who still do not see their health improve. I hope that things improve for you, in some areas at least.
I think that coping with the routines of daily life is probably the most difficult thing about having this condition. Like wknight, I think that pacing yourself becomes even more important, or it's very easy to overdraw on the energy bank when you have no-one else to rely on for help when jobs loom.
I shop online for just about everything, prioritise jobs that need doing and try always to never push myself beyond my limits during the day, in fact try to leave some in reserve for those unexpected things that popup.
It's not foolproof as occasionally you'll still get overwhelmed but to me too it's all about pacing myself sensibly as the price to pay otherwise is just too high..
It's certainly more difficult alone or, with a partner that doesn't understand, come to that...
That's encouraging. I live on my own too and apart from it being very lonely at times, it's hard when there's no one there do do anything to help, like cook a meal or some housework. I tend to keep busy to distract myself from the boredom but then I often overdo things as a result! It's a catch 22 situation as I know I should take regular rests but I hate sitting around doing nothing! 😳
My house is paid for and I have sufficient savings that money is not a worry for me. I was fortunate to have a well paid job and now there is a huge temptation to go back to work and refill the savings but being off work has been the key to getting better.
I've seen lots of doctors and did receive some help. I got some meds that help with the excrutiating pain. Other than that, no one knows what to do. I now work from home, which allows me to keep lying down so my head doesn't hurt as much, and I don't get as tired as easily. I try to pace myself so I don't over-do. I am total crap at this though. Truthfully, I struggle through the best I can. It is really difficult and a lot of the time I don't feel like I can make it through the day. But, I still keep going. I guess there really is no secret. Try not to do much and let what you can go. Best of luck and take care.