We Need People

This is so..lonely. Everyone has moved on but I have INCREASED pain… I wish I had people who have gone through the procedures I’ve gone through. The surgeon didn’t give me ANY guidelines at all.

So, I turned to Google.

The NHS says I should only do proper exercise after four weeks. I’m only week two today and I started a while ago. What if I’m the cause?? I will blame myself so much if when I go to the urologist, he sees incomplete healing.

I have the email address for the urologist’s office but they have not been replying to my emails. And calling is overkill. Well, the elbow surgeon said I should not ask questions and made me feel like a total idiot for asking when I can resume full exercise. I didn’t realise this surgery was that big a deal till I felt the pain. And till it took longer than I thought to be painless- which instead of becoming painless, yesterday got WORSE- sudden attacks of sharp pain.

I think this is the part I hate most with chronic illness. The isolation. Nobody to share experiences with, nobody to check if what I’m going through is normal or if I’ve damaged myself. There isn’t a forum for people with my surgery. No information. And even those who know me personally, we’ve moved on. No encouragement or prayer specifically on this, and I’m not going to ask, do you know how much I’ve asked for especially on behalf of my children lately?? Yesterday I updated someone on a symptom that seems to have passed and I didn’t even get a response to THAT. To be fair, she hadn’t actually asked how recovery is going, I just assumed we cared about each other that way. Which is unfair of me. As I said, people have moved on from surgery. And I think..I think this is something I read long ago in someone else’s chronic pain blog…She feels worried that she’s boring people, so she keeps quiet. That’s where I am now. When a positive is ignored, no way I’ll share a worry. That’s the problem with CHRONIC…if it’s not the illness, it’s the illness and the various surgeries I’m having done. And the sheer amount makes no sense. It’s not normal. Is it linked to AS? I don’t see other AS patients with half as many ops (not linked to AS line neck fusion or hip replacement). So, I blog to process. And so that if anyone else ever hunts for info, they find it here.

Don’t exercise too soon. Ask your surgeon when you can start. And no, AS doesn’t take a break just because you’re undergoing extra ‘stuff!’

Man was not meant to be alone.

But THIS man, feels VERY alone in THIS.

I’m scared to even do my injection till the pain is fully gone though my rheumatologist had said it’s ok to start from tomorrow.. I don’t know…It’s..LONELY.

And THIS loneliness is something I know many chronically ill people feel at some point, no matter what their specific situation is. I wish I could make things better for us. What I can do, is show you you’re not alone in it. Let’s be lonely together.

And then, someone asked how I am and for a photo of my last born. I’m about to unleash the whole truth. AS, everything. Only because her question made me weepy. I’m obviously not having an awesome day!🫣

But hey, I’m on YouTube! You can find me if you search for The Ankylosing African Sabbath-Keeper.