Just an observation here … it’s curious to me that when people know me online (in advocacy and activism) I’m often told that I’m ‘too high functioning’ to have an opinion on those with more support needs.
When people meet me in person — often it’s assumed I can’t sign my own paperwork and have it handed over my head to my husband. The thought is I’m too disabled to be able to sign consent.
Interesting how language changes folks perceptions of ability and intelligence.
Took some downtime yesterday after the doctors. Needed to rest. I’m anemic again and it makes every movement feel like I’m pushing through mud. Add a seizure here, add one there, and it’s enough to disrupt a day … or a few.
Had a small panic yesterday when I learned this office I was to visit didn’t allow anyone in but the patient. The patient in this case, of course, being me.
OK, I was having an outright panic attack on what could go wrong, easily, so very wrong.I have trauma from past doctor experiences and ER experiences. Massive trauma. So this an anxiety based on previous experiences going back a decade now.
What happens when I’m alone without Bill and I get overwhelmed by the office lighting, the noise, the phone, and every other small sound rocketing my brain. The sensory load will become major and I’ll lose my ability to communicate via spoken language. This will complicate matters greatly.Then I’ll lose control of body movements and have tics, tremors, and need support walking.
That I’ve never been to this office before and have to see new faces and an entirely new place is massively overwhelming on it’s own. My brain hasn’t patterned out any of the visual information yet. So I know it’s going to be a lot of carpet staring (please let their carpet pattern be simple). Also, I’m hard of hearing and lip-read a lot. New folks and new faces make that challenging.
And to get changed into the paper gown bit, I need help to get undressed. I need help to unbuckle my sandals. I need help getting up to the table to sit. I need help giving a pee test. I need help putting it all back on too. I need help to standing and then to be there a minute until I know my feet will listen to me and work how I want them to. And then waiting for my hips to stabilize before giving it a test go.
Then there are the questions, the forms and answers they need I often can’t answer for them. Questions, especially multiple questions in a row make my brain spaz and it’s an easy push into a seizure. I’m a bit better now about it, but it used to be three questions in a row and my body hit the floor.
There’s absolutely so much going on for adaptation and support in my every day of life, in my very basic moments of anything that is unfathomable unless you’re me, or someone who knows me very well like my husband. There’s no explaining it to someone else quickly (like a kind nurse and assistants) to support when needed.
Of course, there’s that PTSD factor. If I don’t know you – especially if you’re male — I don’t want to be touched at all. And for the love of all in the Universe, don’t approach me in my blind spots. That’s just a big NO.
And if you do a light touch on me, that can trigger a seizure – boom. Just a small, kind, soft pat will do it.
Yesterday, I realized there just wasn’t a chance in hell I was going to be able to do this on my own. And the propensity for disaster was incredible. I didn’t want another traumatizing time at a doctor’s office. So I panicked and told Bill unless he can go in, I just can’t even. It just wasn’t going to happen. It would be a disaster and I’d be left without him to know my patterns (he sees them long before I do when a seizure is building to trigger) and if that happened and they don’t know me, they’d have no idea what to do. I’d have no way of communicating and i have no idea what I”m like during a seizure with strangers – but it can’t be good.
Yeah — I was spiraling with anxiety.
Thankfully, the stress was easy enough to fix. Bill made a call to the office and spoke to them — I can’t use phones myself to call people anymore for years and years now – and it was resolved. He’s my caregiver and would be allowed to go with me. Disaster averted. The appointment went well and all tests were able to be done. We’ll talk to the doc next week about results.
Every day is calculated around my support needs – and a tiny hiccup can throw the whole day – the whole week – and perhaps set of a flare up that will last weeks – if not years (took 3 years this last time) – to manage and work through.