My old comforting friend, pain

I've been in pain for 8+ years. Sometimes crippling and expletive causing, sometimes annoying and exhausting, but it's always always there. "If I'm awake I'm in pain" is something I told a friend early on and remains true.
Several months ago (8ish?) I developed all of these new symptoms of weakness, numbness, skin discoloration, severe cognitive impairment, skin crawling itchiness causing deep bruising and on and on and on.
Out of all of these symptoms I'd have to say the weakness and fatigue are by far the worst and hardest to fight through.

On days when I feel numb, or utterly disabilingly exhausted, or can't string a sentence together or read words, I feel so awful and generally out of sorts I just need to lie down and check out so my brain can reset or chill or whatever it needs to do in there. I get anxious in these times because if my brain isn't working right then I don't like to be away from home or away from M. He's my safety net. The symptoms come on so suddenly that I get scared to be away from home alone with my kids and have them hit. These are the really bad days.

So, on days where I don't have any of these symptoms, but only pain, it's actually and oddly comforting. Like an old blanket or sweatshirt. I've been living with it so long it truly is my

norm, so when I have "just that" it's as if I feel "normal". Even if it's severe and I can't move. I feel like my brain is saying "oh I know this. Ok I know how to deal with this".  Don't get me wrong it's awful at times still but I get it, I know how to make it better generally- though I may not always like the solution. It's just "back to normal" in my world.
 Weird huh?

Maturity: good or bad?

"You don't make it to everything, but you make it to a lot of things and I love you for it."

This came from my almost 8yr old right after an out of the blue "thank you for making it to open house every year" as I was putting something on her shelf.

I was stunned and speechless.
1. Because of the utterly mature topic for an eight year old to randomly bring up
2. Because I didn't realize she noticed
3. Because my heart broke a little for her and for her brother that me going to a school open house was such a big deal

Tonight was my daughter's open house at school. Evenings are particularly difficult for me lately because my energy and stamina just get zapped so easily, but there was no question in my mind that I would go to open house. She's been working for months on a diorama and report on opossums that was going to be debuted tonight and her art work would be on display. Plus this is the night where she gets to really show me her world. I love open house night actually. Apparently though there was a question in her mind as to whether I would go. She's completely justified in thinking that too. That's the sad part for her really. She knows no different since I've been sick her whole life, but she is getting old enough now to understand that I'm not like "other moms".
So here we go again... "is this overly mature comment something good? Does it mean she will be a mature, empathetic adult? Or is it incredibly sad that an eight year old has to think this way? Is she being forced to grow up too fast?" Honestly I believe it is secret option F: all of the above.

But geberally I think "no no it's fine, they are happy, well adjusted kids who are just mature for their ages" and then I see stuff like this:

and I think "holy hell, I've destroyed my children".

I've said before and I'll say it again: the hardest part of all of this is the effect it has on my kids and my husband. My daughter is independant and mature beyond her years. Anyone who knows her knows this. There's no way to predict if this will be a good or bad thing in the end. It could just be a story to tell her therapist..... Fingers crossed!

Could ya just...!?

I ask my body on a regular basis things like "could ya just let me get through this lunch without excruciating pain?", "Could ya just not give me grief over standing to talk to someone for 15 mins so I don't have to draw attention to myself by getting a chair and sitting when everyone else is standing?", "Could ya just pull through this one thing and I promise I'll let you rest after?". Today's "could ya just....?!" Is a little more angry and defeated than normal.
"Could ya just be strong for me so I'm not a burden to my family at this FUNERAL, so we can all focus on mourning and celebrating and comforting each other and not on ME and MY needs!?" Could ya!?
There is nothing worse than being a burden to others, in my opinion. To have your body not allow you to do what needs to be done. The worst type of burden is when you are somewhere to do something for someone else or be there and support someone else and have your body fail completely. The best case scenario in this situation is that you cannot do what you came to do and want to do for that person. The worst case scenario is that that person or those around you need to then help you and focus on you when it should be all about them. This is the worst of the worst.

Today we are in LA for the funeral of my dear young cousin. The funeral is tomorrow. Today I went to lunch with a friend and seem to have brought my pain level to the point of no return in doing so.  I cannot stand for more than mere seconds before literally collapsing in pain. Right now it's about pain management any way possible so I can make it to the first event tonight which is a dinner with 20 people.
So my "could ya just" is a prayer today that tomorrow will be ok. Just tomorrow body. You can fall apart again on Sunday if you just pull through tonight and tomorrow. So could ya just do that for me? Pretty please?

Tears by the road side

When you are taking an eight hour road trip to the funeral of someone you loved dearly the circumstances will never be wonderful or ideal. When your body decides to completely fail you halfway through the drive and you think "my goodness I can't even rely on my body to drive myself to a funeral", sometimes quick and quiet tears in the gas station bathroom and an existential argument with yourself is the only way to get through.
Then you come out of the bathroom with dry eyes, walk tall and be thankful you aren't alone with your kids on this trip, thankful for your husband and partner in life who quietly takes over and a life that allows me and my body to fall apart without my life following suit. Just my sanity.
My husband will never know what it means when he does small things like looking up the hotel address and getting directions on his phone in case/ so I could sleep and he wouldn't need to wake me (as the one knowing where we were headed). And like holding his arm in what could only be an uncomfortable position so I could hug it, because man did I need comfort right then and he knew.
This weekend will suck for many reasons, but there are always snippets in your day and life that will (should, must) shine through. Even when you are crying in a gas station bathroom on the side of a highway there will always be a silver lining. Sometimes it's so small you can't find it, but it's there. It has to be there or why are we even here?