You Can’t Tell Me What To Do!


I really don’t get the chance to interact with many people. It’s a huge effort for me. But your husband and kids! People exclaim. I see my kids when they drop off food, they are teens! Introverts at that. My husband arrives home from work around 7:30 and must take care of homework and lunches and clean up, so he rolls into bed around 9:00. I have an hour or so, if I managed to stay awake.

So, when I get to speak with a new person it’s pretty exciting! Unfortunately, though, some people (though their heart is in the right place, I’m sure, wanting to help) start in with the “You know what you need to do…” and it’s very rarely helpful. Now, of course I am not dismissing carefully considered suggestions, I’m not unilateral in this! What I’m talking about are the questions that could be better phrased as why questions. The ‘You need to find a new doctor’ ‘you need a housekeeper’ ‘the waiting list for neurologists is six years’  these types of unhelpful comments.

It would also be nice to be asked how I’m feeling, but we might all be pretending everything is fine.

I’m still lying here in the semi-darkness, grumbling most of the time. I feel like my life is flying by. I’ve been lying here for a year. I’m gaining weight back because I can’t move. I am having huge gastro problems. I’m so tired today, I can barely move. I’m not sleeping properly, pain is waking me up. My joints are so weak and painful I can barely do anything. I am so angry at being ignored. How much more of my life am I going to spend lying here?  I can do NOTHING right now. Even watching television is a struggle as the light and noise can only last so long.

I did buy a cervical pillow from Wal-Mart, it’s very nice. It’ helping my neck pain. I lie on it at first, after being propped up a bit and my neck hurts so much, but the next day it feels good. Less pain than usual.

I feel like if I could have a good stretch I’d be better. Momentarily, anyway…


After the awful van attack in Toronto,  one of the victims’ spiritual leader said she had so many loyal and beloved friends because she was a good person.  *Well* it’s really good to know where I stand. 🤔 Perhaps I should stick to Christianity over Buddhism, as it lauds suffering. 😄(Emotionally self-inflicted counts 😜).

Ugh, just occurred to me, my throat kind of hurts – I get really angsty and grouchy when getting sick. (Started to get that way around age 35. Awful.) At least it doesn’t take weeks to get over anymore.

Time for more rest.



Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!


Later that day…

I’m feeling a bit better after a nap, but I am still in a lot of pain. My eyes are really sensitive to light. My flipping teeth hurt.

I am feeling really isolated and alone. Facebook is just nasty lately. Not personally, but it’s so negative. You can’t express a point of view without being slammed with the other point of view. And if you differ? Good bloody luck to you! Yikes! I’m done.

I don’t have the support I was searching for. I really don’t know what I’m doing wrong. I don’t know what makes me so unlikeable. I try really really hard, but I’m always that person on the sidelines. I don’t mean to sound melodramatic. I remember one of our extended group had cancer, and such a fuss! People sent her care packages and knit her hats… I don’t want things… but an email? That would be cool. And not from my mom tied with obligation. My mom tries to be there, but she follows me everywhere on social media, not understanding it feels like a burden.

I feel like deleting everyone but me on Facebook and keeping the memories of all the funny stuff my kids did.

It’s really dark in here, and not just because the lights are off.


On the plus side, I’m covered in melted chocolate and popcorn. I get cravings with the migraine. Probably not the best for it, but at least I went down swinging.


UPDATE: I  took my medication and I just wanted to clarify a couple of things.

I want my mom to be my mom and my friends to be my friends. It’s not that I don’t love my mom, it’s just not her role, she needs to be in her place. I can’t have her out of place, it’s too much for me to cope with. I could be babbling at this point..

I am not sitting back and waiting for people to call me, usually. Now, I am, as I’m incoherent. In the past I didn’t.  Also, now, I’m just not sure I’m much an asset. Be my friend! I will whine about my pain and pass out! ( attempt at humour) though there are those who are silently there, I know.

I think maybe I’m just a mess at the moment. 😄🍫🍿