Monthly Archives: December 2014

Much More Than a Label training – Day 1.

Today has been rather crap and it can sod right off now.

Sometimes I wonder if my diagnosis somehow attracts all the crapness in the world. Or is this normal and I have an idealised idea of normalcy?

Last night Mark and I made the difficult decision to say goodbye to our last remaining hamster, Twitch. His quality of life has significantly deteriorated over the past week. I spent a fair chunk of last night crying. Unfortunately today was the first day of Much More Than a Label training at Argyle House. I had to be there before 10am as training started at 10 but we needed time to eat the Greggs breakfast order which I was supposed to get. Tomorrow would have been just as infeasible. I called the West End Veterinary Practice at 8.30am an got an appointment for 10am. Woke Mark, grabbed bag and coat and hamster (failed to take my book project exhibit as it wasn’t behaving – couldn’t get it to go in it’s normal bag) and walked to the bus stop. Got lucky with a 37 becoming a 47 and got off on Lothian Road, got the Greggs order and walked to Argyle House with the hamster. Dumped bags, showed off Twitch, ate my roll and Mark and I took him to the vets. She examined him and found a mass in his abdomen.  It was definitely time to say goodbye so we did.

Stopped off in Scoff afterwards and then headed back to training leaving Twitch with Mark. Training was ok but I screwed up something at lunch time. There was a bit of a crash in the afternoon which actually came in useful as it coincided with the suicidal bit of the BPD diagnostic criteria.  I was able to give a first hand right here right now account of exactly how that felt. I warned them first and made sure they knew I’d be safe tonight. I didn’t want to worry anyone.

I’m now back at Mark’s. Cried for the first time today during Mark’s WFRP game as there was talk of cruelty to snails. I freaked out and the floodgates opened.

Today can sod off. Tomorrow is day two of the training, Thursday is the conference where I have to present a poster (argh!) and Friday is leaving the country for a New Model Army gig in London.

I can has sleep soon? Preferably without the hypnogogic hallucinations and anxiety dreams and dizziness? Please?

Update: I never made it to day two of Much More Than a Label. I woke up that morning exhausted and determined to get just a little bit more sleep and then I reasoned I could always turn the clock back and it would be early again so I’d make it on time. Yup, I woke up believing I could time travel. I phoned and cancelled and then went back to bed.

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Much More Than a Label two day training

One aspect of CAPS Independent Advocacy’s Much More Than a Label Personality Disorder project is a two day training course on Borderline Personality Disorder (BPD). It’s run in partnership with LEARN, the Lothian Education and Recovery Network and supported by NHS Lothian. The course runs four times a year and is open to most NHS, social care and third sector workers.

The training is delivered by Lili, the development worker on the project at CAPS with some input from Merrick, the Self-Harm Nurse* and a couple of basket cases. Sorry, I mean people with lived experience of BPD. That’s where I come in. Along with at least one other person with lived experience we help deliver the training. We give our own experience, put a human face and voice to the clinically cold diagnostic criteria, explain how it affects us minute to minute, hour to hour, day to day. We answer questions to the best of our ability all in the hopes of reducing the unwarranted stigma attached to people with this diagnosis.

We’re not manipulative. We’re desperate and out of options and no one will listen to us or believe us.
We’re not acting out. We’ve usually tried all the alternatives, exhausted all our reserves and still not getting anywhere.
We’re not untreatable. There are several new talking therapies that have been proven to help people with BPD. Unfortunately these are almost impossible to get. I don’t meet the criteria for them in Edinburgh.
We’re not toxic! Ok, some of us are but no more than in any other group of people. People from all walks of life can be toxic. Having a BPD diagnosis doesn’t make us more likely to be toxic. From my own personal experience people with BPD are more likely to be incredibly sensitive to other people’s emotions and want to do everything they can to help others even if it’s to their own detriment. My other half occasionally has to ban me from volunteering to help others because I will take on too much and my own mental and physical health suffer as a result and he usually ends up picking up the pieces and putting me back together. I’m really bad at saying no to someone in need.

I digress. The next training session is Tuesday and Wednesday this week. And I’ve completely forgotten why I was writing this post. Oh well. This can be an info post about the training. I can post another if I ever remember what my point was.

*Not her actual job title but that’s how we all know her.

Eeyore

“One awesome thing about Eeyore is that even though he is basically clinically depressed, he still gets invited to participate in adventures and shenanigans with all his friends. And they never expect him to pretend to feel happy, they just love him anyway, and they never leave him behind or ask him to change.”

(From a post on Facebook. No idea who the author is unfortunately as I’d love to credit them.)

I’m incredibly lucky in that the vast majority of my friends are like Eeyore’s friends. They still invite me to events even though for a variety of reasons I’m often unable to go or have to cancel at the last minute. No one expects me to change. They don’t mind if I need a cry or a rant or fall apart from time to time. They accept me as I am as I do them.

I’ve had run-ins with the other type of people. The ones who get annoyed at you because “you’re never well enough to go on 20+ mile cycle trip picnics” or “you always cancel on the day”. This “friend” always planned birthdays that were either too physically taxing for me due to my asthma or too expensive or way out of my comfort zone. Now these were his birthdays and he’s free to do what he likes (within the law) and I’d never expect him to change his plans to suit me. What I objected to was the phone call where he gave me a really hard time and called me a bad friend because his plans weren’t always suitable for me. He’s no longer a friend. Life is far too short to waste time on people who cannot accept me as I am, disabilities and all.