445. Mortality

I’m going to die young.

Regular self burning , will one day give me skin cancer. The repeated damage and neglectful care, don’t help. With skin cancer though, I guess you have a fighting chance.

Then there’s my drug use, prescribed (although I’m forgetful with it) and the non prescribed. Taking higher doses of zopiclone nightly and now using my built up stash of Valium to manage stress {work mostly] and sometimes to help stay calm with little man

The problem with all these drugs, is they are processed by our livers and our kidneys. The liver may at least fight back a little being our only organ that can regenerate itself. Let’s face it though I’m on a path to cirrhosis and renal failure. The other problem with all these meds, is their longer term effects on the nervous system. Gradual decline in nerve function, memory loss and neurodegeneratiin await.

Did I mention the Orlistat? (now that’s my pancreas gone}, and the purging. It’s sooo harsh on my guts, my oesophagus and throat. Oesophageal and colon damage, and disordered eating won’t help my nutrition state. I just crave carbs!!

To sum up, I’m always tired and am full off aches and pains, and the colour off my pee is concerning. I’m muddling along with all those things but they will kill me……..

I’m comfortable with dying young. That’s the saddest thing off all.

Loopy x

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444. Should I cry, or ….

laugh hysterically.? I’m lost for words.

Today I had a follow up call with the lovely lady from social services. She informed me that my CMHT are planning to discharge me from their care. It’s frigging laughable. I’m not much further on, they’ve done nothing to help me and now I’m just being dumped!! The CMHT haven’t told me this yet, but I guess it’s coming.

This little nugget of information was concerning enough to the lady from SS, that she is recommending a transfer to SS care. She is recommending that we have more input and family support. I guess she fears for little man. I do too.

As for the CMHT, fine, absolutely fine, FUCK OFF!!! I’m done with you anyway!!

Loopy x.

430. A busy week

This week my niece (9) and nephew (5) are up staying with us. What have I let myself in for!! In truth, they are very good kids, well mannered and great with little man. But the noise, oh my god the noise!!! They are most definitely the loudest kids in Ireland!!!

Noise is something myself, OH and little man struggle with. Especially little man, who often holds his hands over his ears. I’m still concerned about him, to be honest. He’s very very sensitive to noise and I swear he has OCD. Can a child off 3, have OCD?

In other news, I’ve been building… Base frame and 1 wall frame done, with other timbers cut ready for assembly. I’m actually really enjoying this carpentry malarkey. Who knows, I may quit academia and live the quiet life, building crap out off wood, and selling it at a loss (proper stuff is quite expensive)

Finally, I have my psychology assessment tomorrow. I’ve no idea where to start or what my priorities are. I’m hoping it’s quite a structured chat. I’m nervous. What if they say; ‘you’re not suitable?”

I’m terrified off lockdown easing, I’m scared little man is damaged, I’m self harming, using diazepam in excess at night, abusing Orlistat and generally, I’m just messed up.

Where should we start………

Loopy x

427. Psychology!!!!!!!!

I’m in shock. I thought it would never come but almost a year now, living back home and finally, I’ve received a psychology assessment appointment. July 8th over the phone.

Is it weird that I was almost excited, reading the letter.

Let’s hope this is the start of something that will ultimately be positive. I do worry a little that I’ll feel worse first.

Loopy x

426. Social anxiety.

So the shops are now open and people are going friggin crazy, piling up clothes and underwear and homeware and all manner of crap. It’s insane.

I wandered out today for the first time in ages. Apart from my weekly jaunt to the pharmacy to collect my cocktail of meds, I’ve stayed pretty much hidden away from the world. Today has reaffirmed that I wish to stay hidden away forever.

As I walked up the street, entered shops and stood in queues, I could feel a 1000 eyes on me. Real or imagined, it doesn’t matter, the feeling is the same. I felt strange, uneasy and anxious. I wanted to run home, literally run, but I resisted.

Once in the door I reached for my diazepam and a huge tub off ice cream.

I’m eating Orlistat like smarties these days, and especially on days like this………….even though I cycled 21km this morning.

I need therapy, I need help, and I’ve no idea how to get it? I want to talk to someone. I’m bottling up all my insecurities, worries and stress again. My new key worker/CPN is possibly very nice, but I can’t pick up the phone and call her. I don’t know her, or trust her yet. The very first time we spoke, she said she’d check in again in a month, so roughly 2 more weeks to go. How is that helpful?

Come on loopy, your not a child. It’s not up to others to check on you, probe you, or read between the lines. Take control for gods sake!!!!!!!! you useless whimp!!

I feel an explosion coming

Loopy x

421. A lung buster!!

I’m back on the roads, pumping pedals as hard as I can and sweating buckets!!!
I did probably 18 miles today in scorching heat.

I got stuck behind two ladies kitted in lycra and obviously road bike fanatics, and I must admit I felt a little smug being able to keep up with them.

Anyone who knows me, knows that I’m competitive, often to my own detriment, so let’s face it I wasn’t going to let them get out of sight!! But nonetheless it boosted my endorphins.

I know this routine by now, June, July I’ll be energised, I’ll cycle, I’ll cope and I’ll improve and then come August BLAM!!! I’ll start to crash. 

It’s a pattern, one that  I’ve never really discussed but one that is ingrained by now.

So while this lasts I’ll enjoy the little mood boosts, and continue to cycle harder and faster.

Oh by the way, I’m nearly off the zopiclone.  I’ve gone it alone (I had to!!, there’s no help here!!) and Im coping.  3.75mg / night.  This is the lowest dose I’ve been on in nearly 2 years. 

Oddly, lockdown is suiting me, I’m liking hiding away, not seeing ppl, not showering (gross I know) and lounging in football tops. I’m scared of coming out of it

Come on Loopy, keep your head up!!

Loopy x

419. Red in the face..Literally!!

What happens when you mix glorious sunshine, with quietiapine and albinism??
Lobster Loopy, that’s what   I went for a bike ride today, but stupidly forgot to apply my factor 50.  I’m growing redder by the minute.

The worst part is scorching the backs of my hands as any movement at all stretches and pulls at the skin.

34 odd years with albinism and a few years on quietiapine, you think I’d know better.

On a side note, I’m really really really missing C and L today. I had my first phone contact with my new care coordinator this afternoon.  They prefer the term key workers over here.  I think it’s because the title of care co-ordinator could be taken up with trading standards!!! They coordinate f$%k all. 

To quote directly I was told” it’s not like I’ll be ringing you every week, I’ll review you in a month”

Can please please PLEASE have L or C again……

Loopy x

418. The black dog.

He’s been sniffing around today I can’t explain it, but my body feels tense and on edge. My mind feels useless and scatty. My future looks hopeless and worthless.

I hate when I feel like this. I want to buy pills, I’m toying with self harm. I’ve thrown up. I’m slipping somewhat and it scares me.

Just go to bed loopy. No buying pills, no self harm, no undoing the progress you’ve made lately.

Just go to bed!!

Loopy x

416. On bad days.

On days like this, I want to stay in bed.  I want to avoid the world and be alone.  I blog on bad days.
Here’s the thing though. I’ve had more good days lately, than bad.  I should be writing about those.

This past week I’ve been reducing my zopiclone and diazepam usage. I’ve been playing with and loving little man.  I’ve been productive work wise, and have even 99% landed an external examiner post.  I’ve been on my bike, I’ve been cuddling with OH.  I’ve been having argument free chats with dearest sister.  I’ve been puking less and no self harm.  I’ve been doing well.

The reality here is that, to some extent COVID lockdown is giving me breathing space, a chance to bond, a chance to reset.

Today was a bad day, but the week has been good.

Focus on the good!!!
Loopy x

412. It’s caught me off guard.

I’ve chomped my nails, down to the stumps, I’ve binged and purged.  I’ve burned and tonight for the first time since discharge, I want to knock myself out with zopiclone and diazepam, both of which I have in my possession (not loads)

I can’t explain it but a huge wave of sadness, hopelessness, self doubts and self destructive urges have hit me hard this evening…

And so the cycle begins again……………

Loopy x