How do you do?

I’m sure this is a struggle for anyone with a chronic illness…
But how do you keep pushing forward when you can no longer do the little things?
I can’t tell you how much I want to sleep one side, or just relax in any not pre-planned highly specific position. How much I want to ride in a car, or go out with friends, or go to my sisters house 2 hours away. I want to walk my dog, and accept a movie invitation, and he able to sit in a movie theatre seat. I want to cool dinner, or lift things, or wash my hair and reach a glass without needing to gag and lay down. Much less sit at meal without pain. Round back chairs are basically fingernail torture right now…
Is this extreme? Is this beyond ES?
I didn’t even have Allergies before I got hurt… What am I chasing?

How do you cope? How do you stay positive or even Human, especially during this time of year?
Everyone seems to have something, even something small.
It took days for me to order my mothers present even online because of the strokey symptoms. That’s not the kind of daughter I am. I want to take care of my parents, not have them cater to me!
I know they are doing everything to help me get better, but how do you Cope with the downfall of being so independent to stuck in bed?
How is it worth it to keep fighting?
What do you fight for?

It is definitely the extreme end of ES, what you're going through, so I really feel for you, to be in that much pain, and also to have the stroke symptoms too... I guess you just have to cling onto something, however small, that you can do- and keep the hope going that there will be a doctor to help you. Anyone with long term health problems has to find a 'new normal', but I can see that it's really hard for you, as there's so much you can't do. You do have your family and your dog who love you, let your family help and hopefully one day you will be better and will be able to return the favour. Keep fighting for that chance of a cure...

Thinking of you, and sending you a 'gentle' hug...

You sound like you're really strong, and you've already turned this into a positive by researching ES, educating yourself so that you can push for the right treatment, AND you're using that to help others too on this site! Without people like you on here doing that, we'd all be lost.

In my opinion, you have to have hope. You have to keep trying and try every doctor you can find until someone says yes. I prayed to die almost every day for a couple years. I think you just have to keep going one day at a time. Do whatever you can do for yourself to get through the day.

I sat in the lobby of the main building of the Cleveland Clinic crying every day for a month at one point. That was when I was trying to get my second surgery. I think we have more strength than we realize.

It's really good you have people to help you. That's a very positive thing.

I know it's incredibly hard to get through sometimes. There is a light at the end of the tunnel. You will find a doctor to help you.

Thank you for you kind replies.
I typed something back but apparently it's been devoured by the ether.
I was having a very hard ay, in a string of stuck-in-bed style hard days, which I can't say has gotten much better outside of this.
Right before the phone lines shut off for a holiday break, someone named "Amy" (no other identification) from Dr. Cognetti's office called me to say they had received my faxes and wanted to "talk". She won't be back in the office until later this week.
My immediate gut clenching reaction was that She was the person who told me don't bother coming to my appointment, or they can't help me. I would think this paranoid if it hadn't already happened many times before at different offices... So i've been stewing about that while laid up.
Then, Saturday, I find out there's been some mistake with the records office and none of my recent records were sent to Dr. Cognetti. So the ENT received a big pile of records all pertaining to my shoulder injury and TOS testing, and absolutely NOTHING about my calcified styloids, or surgical plans, etc. AWESOME! Now I think I know why they want to talk, and am even more fearful it's to tell me to go somewhere else.
Still trying to get in touch with records, but everyone still seems to be out on Holiday.

Jules- Thank you very much for this. The "new normal" seems to be under constant edit, and is Really getting ridiculous at this point. Thank you for encourging me that I still have Some functionality. Your advice has really been a rock to hold on to since I joined.
It's been hard to accept a new normal of "can't" and letting my elderly mother do things like carry my bag or cut my food. I haven't been this dependent on her since I was a toddler, hahaha! This still can't be the new normal tho, my mother is getting older, my dad has some emotional trouble that seems to need just as much supervision as I do these days, and they're both about to retire. Caring for a cranky full grown woman is just not feasible for them in the long run.

Heidemt- This is Terrible! I wouldn't wish this kind of strangely consuming decrepitude and mystery on anyone, and it breaks my heart to hear that you (and others) have already beaten this journey down into a well worn path.
I know what you mean about losing you will to go on too. This isn't Life anymore. If I was my pet, I'd have already put me down and known whole heartily it was the right thing to do. For better or for worse tho, I'm slightly more articulate than my pets, and still believe somehow that this can change if I can just get the right people on my side.
What an awful time at the Cleveland Clinic! Did they finally gain some humanity and try and help you?
And really rooting for your most recent surgery being the winner, and I hope you and Jules are both healing up well.

Snapple of Discord, you always make me laugh. It's really great that you can keep you sense of humor in all this. So many of us have gone through similar situations, so I think it's good to know that you aren't alone. This is a good place to vent so vent anytime you need to.

That's so frustrating about the medical records mix-up. I hope you can get that cleared up quickly. Please keep plugging along and hang in there!