Tammy Also we all have to get to a point to know what we can and cannot do when we are feeling good it took me 30 years to figure this out, I was doing exactly what you did everything when I was feeling good then down for days
I know realize that I can still do what i was doing (mostly) but I NEED STRICT regiment
I have 2 hours a day where i can do this, after taking my meds letting them set in and then going out to do things BUT then I NEED to come back and lie down and take my meds take a nap and get to go out again and do another hour....for the most part I can do that
There are days that I can absolutely NOT do anything
Last week I was down for 3 days I did nothing out o the ordinary and I just had to let it run it's course no matter how many meds I took NOTHING could stop the pain
So DO NOT BE FEELING GUILTY for a disease you cannot stop

It's only human I assume you are human But when faced with a debilitating force that we had nothing to do with or an accident what can you do but fight you wrote on another post that you are looking into clinical trials and that is great keep searching but look for things in the UK that are available now sign up for 3 or 4 at a time as the UK wait is so damn long
Remember Ice also there was a time not too long ago when the only position that felt food for me was lying on the floor with my arm out
could not sit so yes i did feel guilty having to excuse myself from the dinner table when my kids were young and I suppose they dont or did not understand I actually wrote a 4 page typed letter to my kids and my Dad the 3 people who actually care and it is a timeline of what happened to me why I love their suggestions but why
Laproscopic surgery wont work why no surgery will work any longer why I am sorry that I miss their get together's but I cannot drive 1 1/2 hour to see them and 1 1.2 hour back and visit
As I only get 3 hours a day when I can semi function
But I am sure they will still not understand because I look good and they see that I do things around here so why cant I go up there
I have a property that has 2 houses on it and I rent so there is always something to do something to fix
And I am trying to make is a Beautiful piece of property the best on the lake I live 50 feet from the water
I am building a gazeebo now in a corner of the property that needed something badly
But they see me doing that and I am sure they question why without understanding that 3 hours is 3 hours.
see only human
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You are in pain constantly
The ONLY reason you would feel guilty is because others look at you and may not see an outward sign off your disease
That's on them not you
Deal with your pain that is work in and of itself
Don't get caught up on the side issues of others
Good luck

still seems very odd....and I am sorry to hear it but you do have to be your own advocate, if there is any thing I learned it is that, and you have to be a real pain in the arse to every one you deal with on this so they want to get rid of you Whether that is in your make up or not you have to do it

Anytime I have a good day I think I'm cured and then do too much (like load the dishwasher) and I'm out for the next four to five days. I feel guilty that my husband has had to pick up the slack and become the breadwinner as well as the housewife! 😥 I feel terrible when I'm sitting on the couch in severe pain as he does all the house chores. I want to help him soooo bad but I am just unable. Some days my legs don't work as well as others.