… but I just don’t seem to be into that anymore.

I should talk about my fears and thoughts about discharge and the future.  About whether I feel recovered, or disappointingly not.

About the new job.

About a myriad of stuff.  But the words just don’t come anymore.

… so I’m cured, and awaiting discharge.  Back from the CMHT to my GP.  All great, but I want off the meds, or at least the meds to decrease first as GP will never reduce them.  No intention of being “stuck” on them.  Surely the true test of cure is to no longer need the chemicals…

This is the anniversary of my one and only mental health act assessment and subsequent in-patient stay. It is one year since my world shattered (again and completely) and my life ended. And it’s been a year…And as much as CPN says I’ve come along way, it many (and important) ways I am still in the same place…

“Oh the time
Oh the time slips away
And it leaves you feeling down
But as the time
As the time slips away
Those memories of the past seem to stay
Those memories stay” Dave Gunning

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… let’s call it what it is.  My physical problems are caused by the drugs I’ve been prescribed.  Therefore the rational and logic way forward is to discontinue and hope that the problems are reversible…

What’s the betting I get fobbed off again instead?

I want my life back.

…. swords arrived

The sword bag is actually navy silk unlike the normal cotton ones – very nice feel to it too.

Quite surprised to find it had been wrapped in japanese newspaper (not sure how common that is, as all my previous swords I bought through Sensei, this is the first one that’s come direct to me from Japan (well via, the company selling them.

It’s actually quite prettily wrapped (well I think so).

Of course the Japanese are quite well known for their awesome abilities to fold things…

But I digress

The katana complete in it’s saya.

The Tsuka is purple!

And the fuchi (and kashiri) have butterflies on them.  The bamboo peg is also a sign that this sword is properly constructed and not a cheap knock-off wall hanger…

The flying theme is continued by with the dragon fly menuki (though I hadn’t realised I’d selected that one, I actually think I accidentally selected it, rather than the one next to it, but that’s ok – certainly not the end of the world.)

The habaki, which is plane because I wasn’t prepared to pay over £130 to have anything different… You can also see the hamon (the wiggly line where the boundary between the part of the blade that had clay on and the part that didn’t, as the blade cooled, and the hi or blood grove (which runs down the length of the blade.

The kissaki, or face of the blade

And finally the tsuba… which was upside down when I took the picture, but you get the idea…

If there’s something serious wrong with you, that could cause problems that might (a) kill you, or (b) seriously alter the way you live your life in a not particularly good way, are you better off knowing?  Or is head-burial-sand, a better option?

Perhaps I should explain…

Since I was a kid I knew there was something not-quite-right about me.  Some phantom condition.  (Ignoring the obvious psychosis and suicidality of course).  I was different to those around me, things didn’t quite seem to work the same.

There was obvious stuff, I was always so much smaller and less developed, being sent home from school time and time again because of the nose-bleeds that lasted a good half-hour or more, little things, little niggles, my athletic career was none existent… But then I had un-diagnosed asthma… and no access to any doctors…

And boy was a flexible – I spent most of my childhood in the lotus position, which I’m ashamed to say I can no longer get into…

And I grew up.

And I continued to have vague symptoms, vague problems.  Vague chest pain, vague joint pain.  Wrists that’ll flare with a moment’s notice, a back which is royally screwed, but half hyper-mobile and half not-so-much.  A knee that should have been broken but wasn’t, yet still hurts.

In ninjustsu, I could get out of any lock, but my shoulders made awful grinding, popping noises at times and the teacher at the time R was forever terrified I’d dislocated them, because that’s what it looked like from where he was standing.

But I did ninjutsu, and I pushed, and I pushed and I pushed some more and I eventually got to second dan (not graded in years, more’s the pity).

But still the belief that the million and one trips to the doctors office, I now how access to, were because of something, a thing, a one thing.

Various physical things showed up – the most devastating – bilateral retinal detachments.  I’m going blind.  I’ve already lost a lot of sight, but no-one, no-one can give me an adequate and acceptable reason why I, at age 24, should suddenly experience spontaneous, bilateral (i.e. both eyes) retinal detachment.  I was told it was a sign of old age, but I was 24.  No trauma, no reason, nothing…

And at one point a few years back, someone I knew mentioned a physio thought she had Ehlers-Danlos because she could do something I figured everyone could do (and I could do more… not that it’s a competition).  I spent a day or so researching, then forgot all about it.

Now a few years later, well as I said in a previous post, I think I have POTs (Postural Orthostatic Tachycardia syndrome), which is based on measurements I took myself (I have a BP machine).  I think I’ve probably (given the passing out for the last 12 years) always had it, but alcohol, quetiapine and lofepramine all cause tachycardia which would make a bad situation much worse, very easily.

Someone mentioned maybe I had Ehlers-Danlos, they’ve met me and queried it… Which was an idea that interested me.  Now it’s scaring the shit out of me…

It’d explain everything, or more in particular *everything*… (well when taking POTs in to consideration too)

Not just the hypermobility, or the lovely soft, smooth, elastic skin, but the retinal detachments, the IBS, the pain in my joints, the exercise intolerance, tachycardia, the chest pain, the back pain, the iridescent skin, the easy bruising, the constant sores, cuts and grazes, the ease of scarring, these, hell even the varicose veins and gum disease, the nose bleeds, the “I can dislocate and relocate my shoulder and I don’t care”, the breathlessness, the fact I’m fine if I lie down, the passing out, the horrifically slow wound healing particularly for the extremities, the strange “electric shock” sensations, the high, narrow palate and teeth crowding and a billion more things I should write down in a list and take to my GP…

I saw a GP yesterday, he sent me to have a chest x-ray, I’m sure it’ll be clear, and pointless.  Saw CPN today, expected her to rubbish what I said, not write it down… She says I need to go back and I need to make them listen…

But I’ve been trying for two years with regard the heart-rate and all I’m ever told is that it’s depression and/or anxiety.

And of course there’s reasons not to pursue…

1.  It’s not curable, or even particularly treatable – my ambition was always they’d find something global, fix it and I’d be suddenly “normal”

2. Although it’d explain depression to a point, it wouldn’t explain all my mental health problems, therefore the (non-existent) cure probably wouldn’t fix that

3. It has some major consequences that are scary shit, and diagnosis would mean things changing forever.

It’s the spinal cord stuff that scares me the most, given how bad and how hypermobile my back apparently is…

I kind of expected the CPN to rubbish the idea, tell me I was being a hypochondriac… Not listen and take my concerns seriously…

OK realistically, it’s a rare condition, and a lot of those symptopms are common.  I probably am being a hypochondriac… but at the same time it’s scary, and yet would almost be a relief… but mostly it’s just scary.  But I don’t know, do I pursue, or do I not?

If these…

et.  al. were to be on sale, how much do you think they should cost?  Just wondering, but I have no idea how to value them.

Thanks.