Few questions/tiny moaning!!!

Thank you ALL for your wonderful support over my seemingly recent diagnosis of Sjogren's Syndrome.
I would like those here on this site the following, espec those with SS.
I seem to have a massive set back in the travelling to London to see this famous guy Hughes. I was alone and did a lot of walking holding on to the wheelchair as I am too weak really to sit and push self.
As a result the neuropathic pain in both legs up to knees and including have gone AWOL and the pain in my hands too which are flaming red.
Not only that but the joint pain and muscle pain in these areas is horrendous espec the wrists and hands, both the bones and muscles seem affected and I c ould scream in pain.
My general carcass is effected but especially the above and I have become very very depressed again.
Another question. I go awol in the light, noise and crowds, really it does sommut terrible to me, I find it hard to describe, neurolgically very distressing NOT psychologically as in panic but it HURTS the body and I want to flee. Is this common.
Please tell me how I deal with all this without taking yet another pill.
Twin who has Parkinsons now in London is telling me that she is doing loads of photography and garding for a friend and I couldnt even get to a couple yard beyiond the priory. I do realise she has a degenerative disorder but by gum she is very positive and cheerful telling me all the great photography she is doing and I can't as too ill.
Some ask what is the treatment plan, well no one has mentioned one. I'm to take the heparin when all the paper work is done for the sticky blood and the society here for SS say it really is up to me to self care and treat.
I also seem extraordinarily exhausted and can only go out for an hour and just want to sleep forever.
I still donno about my muscle wasting disorder nor my pos for the parki.
I bought a step machine which I do in the morning having breakfast sitting down, its on a gentle pressure and I bought hand gizmos for squeezing for strenghtening the hands but they have been too painful to start using.
I am now finding the manual wheelchair too much for me and the rollator and I am TERRIFIED TO TELL THE HEALTH BOARD as they will make me leave my fab corpo flat for a downstairs flat.
I have already fallen in the bathroom since comiming home and fallen down stairs prior to going to London and when putting the wheelchair in the car I have fallen on my bum with it crashing down half on top of me.
oh dear!!!!
xx Ann.

Hi Ann . Urghhhh! You've had it rough haven't you. I think it is easier to give the image of being active and positive when you are ill than actually doing it. My family and friends think that I lead a normal life and yet i am MUCH less active than I would like to be. I do keep a positive attitude but every once in a while the tears just overcome me, wanting so bad to be the "tomboy" I have always been. I bet you look heroic to some people. You ARE heroic!! look at your independence in spite of illness that would have others seeking MUCH more assistance. Oh, you pain sounds really bad . . . maybe nerve pain. Make sure and ask Dr. Hughes about the treatment plan. Ask EACH of your doctors at EACH visit about the treatment plan. What good is going to the doctor if they don't give you a treatment plan??? You have given me extra courage and motivation to go into the new week!! Blessings!

Ann, some of our meds can cause the "ants in your pants". I know pred can do that, but I don't know about the meds you are on. PINK!!! How divine!! I bet it is really 'girly girl'!!! No wonder you are fussing, you are still getting everything in just the right place!! Those people that look away and pretend to window shop . . . are trying not to stare and they think it will be easier on you, if they aren't looking right at you . . . they really DO want to help, but they haven't a clue that they could just walk over and help . . . they think they need a master's degree in nursing to be of any assistance. I used to be one of those people until I spent some time with a friend of mine who would just walk right up to people and start helping. NOW I know how to do it. If I see a feeble old man or woman getting out of a car, I bring them a shopping cart because (for me anyway) it acts like a walker and is helpful. They actually do appreciate it too. When I see a person in a wheelchair at the store I watch to see if they need help getting items from a high shelf. You sound like a super fun lady to hang out with!!! Blessings!