thanks everyone for the advice and replies..wehn im really upset it helps to come on here and vent becuase i know others are going through the same...i appreciate your thoughts..
bob i had learned aobut pacing from the support groups...if the doctor told me i had forgotten...it took me a very long time to except being ill...im doing better than i had been at excepting it i think...i use to really overdo it with shopping, becuase it was the only thing i couold still really do, but id get in panic and overdo it everytime, one doctor made comment that taking care of family right now is all that i can do and i need to see how important that it...becuase i did put such a high value on my job, i loved working for my family...i always looked at taking care of kids not a job but soemthing as a Mother naturally i should do,
i have been pacing myself...ive exhausted our money with test, physical therapy, treatments, vitamins, natural supplements, medications, everything...like most everything comes back normal...i have back issues, migranes, memory loss things like that associated with these illness...but no lab test to pin point and be given something to stop from getting worse..and i keep getting worse...
and i will be having to drive one child to from shcool, ive mentioned on borad about being nervous the driving, but have to. no bus, no one lives around to communte, its not on highway which is my biggest panic problem, so im blessed with that...but with having a family
{though they do help out so much}, and i feel guitly for that them picking up my slack....therers shopping and errands i must do, and as i said the least little thing wears me out...
Hi hurtingallthetimet,
Sorry, I made some assumptions when I wrote my post...
I assumed that you haven't been ill for very long.
It's really tough to deal with, isn't it.
In my experience, the more you can rest, and the less you can feel guilty about it, the better.
But I know if you've got family duties then it's impossible to care for your family and rest enough.
i cant afford all the test anymore, and trust me i have had ALOT, put together 1 1/2 yrs physical therapy id say or more...its not like i dont try..ive been sick since 2005 and it keeps getting worse, im so hoping for a plateau {sp?}
If you've got CFS/ME, then tests often come back either normal or sub-clinical.
In the UK we just don't get any tests at all, apart from a few basic ones like thyroid function.
Once they come back normal, then it's just a case of managing your life, and your symptoms, the best you can.
If your tests keep coming back normal, then is there any point in continuing to pay for more?
Do you mean you've undergone some kind of physical therapy?
Do you mean like Graded Exercise Therapy?
The PACE Trial proved that stuff like that doesn't work, and we know that CFS/ME reacts negatively to over exertion.
The most important thing, in my experience, is to tune into your symptoms, accept them for what they are, and to plan your activities accordingly.
the pacing has helped some, and i no longer force myself to do all the shopping and over do it, the morphine helps me do things some like taking walks....it is just so crazy how wiped out i will be after doing anyting...the mirgranes worse, memory short term, pain worse...i just want it to stop...
You might need your pain meds, but in my experience, harsh medications can be very counter-productive for ME. ME bodies are very sensitive to stimulation, and toxins etc. And pain meds can also mask your symptoms, meaning that you aren't aware of your limitations. So they can in fact be rather dangerous. If you have ME, then it is reactive to exertion, so the worse thing for ME, is to ignore your symptoms, and your limitations, and to push on regardless. It's only when I stopped doing this that I started to stabilise. Using pain meds as a chemical crutch will not help you heal or stabilise.
It does require a massive change in lifestyle. Maybe you could sit down with your family, and discuss how you could plan to lift more burdens from your day. Planning to do that now, for a few months at least, might lead to a better outcome in the future. If I have one regret about how I managed my illness, it's that I didn't learn how to do 'nothing' at a very early stage.
Best wishes.