Why don't you listen?

Why is it so many youngsters in the NHS are incapable of actually listening to patients?

I was asked how my epilepsy, FND and OCD were I replied “They’re considerably worse but at the moment I’m just about managing to cope.”

So that was translated as “no change in her epilepsy, FND or OCD” in the clinic letters.

At that last appointment back in July 2021 I was just about coping. But now my OCD has got considerably worse because of the aggravation with both the housing association and that idiot of a consultant primarily because their behaviour has considerably exacerbated my epilepsy. And for the first time ever stress is actually making my FND worse usually my FND tends to interrupt when I’m relaxed and/or enjoying myself.

It also doesn’t help that my physical conditions have deteriorated to the point where I need to wash & change clothes frequently the effort of which makes my physical conditions deteriorate even further. Most of the time it’s all I can do to get pants and a t-shirt on.

I was also getting to the point where standing to prepare food and cook it was becoming difficult but then an incident in the kitchen triggered my OCD and now simply going into the kitchen sends my anxiety levels through the roof and triggers my OCD big time. So, most days I tend to avoid the kitchen because of the stress it causes which in turn triggers my epilepsy.

Having a pulse in the low forties and being physically exhausted by the simplest of tasks such as keeping me fed, watered, clean and preventing serious infections is taking its toll, it also makes me confused resulting in me feeling so unsure of what I have or haven’t done and so exacerbates the OCD.

And before anyone says anything it’s not easy when you have two conditions that aggravate each other. When my epilepsy is poorly controlled it makes my OCD worse because of the uncertainty it creates. My OCD demands certainty and my epilepsy creates uncertainty.

I was doing so well with my OCD and proud of what I’d achieved but a combination of lockdowns resulting in deteriorating mobility and being unable to access treatments I need has left me in one hell of a mess and trapped upstairs unable to get downstairs to my own front door. I can’t even manage to shower daily as

• I’m not up to it either physically or mentally 

• I can’t manage to move all the rubbish bags, I’m having to store in the bathroom as no one to help me put the rubbish out, shower then move the bags back into the shower.

I’ve spent my life doing for others in one way or another but when I need help EVERYONE runs a mile before I’ve even asked.

Having said that the supermarket & their delivery guys have been fantastic, they never quibble about having to put my shopping in the bags I provide so I can then haul them up, in fact we’ve had a good laugh about it as they’ve never had to do it before. They are also concerned about my general welfare & always ask if I’m okay & if I need them to contact anyone to help. This is more than either the NHS, HA or SocServ have done, they’ve just left me to rot.

I can’t cope with this either physically, financially or emotionally anymore especially with no ongoing treatment for my physical health or any support.