Pip letter today about the law changing relating to planning a journey

janer1967

Seems I've opened a can of worms here 

cat_hug

Hi @chiarieds if I'm honest the actual wording of 'OVERWHELMING psychological distress' makes me question if I'm over exaggerating or appear to seem like it's laying on thick.
I've laboured this point in my own head and driven myself daft about whether that's me. The truth is. I was raised in a big Irish Catholic family where issues around mental health were never discussed and even though it affected close family members. I Lways knew as a child? This was never. Under any circumstances. To be discussed outside of the home (it was barely discussed among ourselves. Never mind to outsiders)

There was an unwritten  rule which learned very young.  that the stigma of shame that would be associated with words such psychological. Psychiatric. Mental health. Anxiety. Depression etc. We're just so taboo you would simply go to any lengths of self-denial rather than admit to suffering these difficulties.

I do recall having a real inner struggle with answering that question because all of those entrenched stigmas seemed like you were being rubber stamped indelibly.  With all the things you were taught to fear (ie not having that label)
In the end I think I did actually say. Yes. Being in this or that situation DOES cause me overwhelming psychological distress. Because the fear of having an attack and the risks and dangers associated with the physical problems. Also cause extreme distress.
Ironically too. One of my main triggers for having a cataplectic attack. Is fear. Shock. Suprise. Sudden loud noises etc. Somebody sneaking up on me and making me jump.
I've been in situations with people who think it's a big joke to scare the living daylights out of me by honking a car horn. Or shouting boo. So that I literally collapse in a heap like a rag doll. It's a two fold thing where strong emotive things will trigger the cataplexy ( which is associated with Narcolepsy but not all narcoleptics have cataplexy) unfortunately. I  have both.

I think this is where the confusion arises. Even among consultant neurologists. Unless they specialise in sleep disorders. They often mistake or misunderstand the two very distinct facets of this disability.

So I believe they considered the fact that sleep attacks are obviously dangerous and debilitating. Therefore awardeding the 12  points for mobility under the rule of needs a guide dog or person etc. But completely dismissing the fact that overwhelming psychological distress. Manifests in a very physical way by inducing cataplexy and vice versa.
So they didn't feel the need to even consider psychological distress in terms of engaging socially. Because their argument was that this was addressed through the mobility descriptor and getting 12 points awarded for an ongoing period addressed thT.
For me however. This isn't the case.

Yes. Being awarded enhanced Mobility was greatly appreciated. But getting no points at all for social engagement is complete anathema to me?
If  I were Miss Daisy (like in that film) yes. I'd feel safer and more confident about planning and taking journeys. But it still wouldn't help me with the severe action caused by such distress. that makes me physically suffer a cataplectic attack... and that's a visious circle because it causes even more distress when it happens and people either think its hilarious or think I'm drunk or on drugs and so it gets to the point that even people queying in the shop behind me makes my muscles go and Illdnd up dropping my change. Or groceries. Whilst an impatient cashier or customer is rolling their eyes or tutting.
It sounds silly I suppose. But I've had occasions like that where I've literally just had to get of the store and leave my shopping half checked.
That's just one example but there's many more  I can tell but they probably seem like stupid reasons to most people. I'm not explaining it very well and that's a problem. Because if I cant find a way to communicate these things.then they won't be understood. I'm not sure i understand it myself. Just that certain causes have a certain effect that isn't pleasant and makes you want to avoid people to avoid such situations happening... does that make any sense? 
Sorry to be so garbled and inarticulate.  Cat xx