Doing a Daisy 🐈 all day today. It’s been the morn/afternoon/eve after one of the crazier NYEs in my life. But every New Years Day is a reminder of Mum. 21y, but still remembering today. The shock of learning that #Epilepsy kills. She never made a big deal/complained about it 💜>
2/ Apart from a disabled rail pass she never really seemed ill. She somehow managed 4 very strong minded kids and a difficult life. Her life got more and more difficult as her life went on and her last 7 years were very sad indeed, she was physically very disabled & very unhappy
3/ That’s the saddest thing I remember. Her being sad and having had such a shitty life, especially at the end. I think of her as a very loving Mum who was a real homemaker and an incredible cook. She could could anything. Whip up meals for a family of six out of leftovers. >
4/ She made a Chicken Surprise stew once which was a surprise if you could find any chicken in it 😹😹😹 She was very artistic too. She was softly spoken. People thought she was quiet but she spoke. She was not moved from her opinions without good reason. >
5/ After the motorway collision we lost that Mum. We had a different Mum who woke from the coma. Very fragile, sad, broken in mind and body. When she died it was the second time we lost her. The seizures she’d had from 5 years old & the head injury had finally claimed her at 47 >
6/ The only reason I know she was 47 is because it was written on her coffin. I remember seeing it. I was from a community where birthdays were not celebrated, so I never paid attention to birthdays. I never really knew or retained my parents birthdays. I don’t remember Mum’s.
7/ Now I’m only a few years off 47, I think how young she was, but how old she looked. The idea of having 4 kids aged 12-21 right now seems so alien to me, but she did. She grew up, got married, did what women were ‘supposed’ to do. She never worked. I worked but never grew up >
8/ She was this incredible Mum. I was the eldest so I could remember her before the sadness moved her over the bridge, colliding into the central reservation of the motorway. Surviving as a shell of herself for 7 years. But I remember the loving Earth mother from before >
9/ My little brother was 5 when it happened, so he will never really remember - or know. Her post partum depression was pretty bad after he was born. She loved Amethyst and pigs. Why pigs, grief knows. But I love amethyst to because it reminds me of her. >
10/ I have an Amethyst ring I bought that reminds me of her. My wedding ring has gold and stones from her jewellery. I carry her with me on my hands every day, even though I don’t consciously think about her each day anymore. I miss her. >
11/ I was brought up to believe that when you were dead, that was it. Kaput. No more. It was a strange belief that involved a resurrection to earth at a later date, which meant we never mourned properly because dead ones were away temporarily - sleeping - on holiday…??? >
12/ Only in recent years have I realised that strange beliefs meant I never properly mourned Mum. Neither did my siblings. I’m not sure I know how to. I’m learning death in my 40s, as I reach Mum’s age. I wonder what she would think of that, because she never learnt death either>
13/ Its impossible to know what happens, isn’t it? I moved away from the strange beliefs after she died, no longer so beholden to them. I very much subscribed to the idea that that’s it, when you are dead you are dead. Minus any theist beliefs. But as I’ve got older, softened, >
14/ I’ve realised you just don’t know. It’s impossible. The idea of our energy, our life. Life everywhere. Where does it go? Is it a religious thing? Spiritual? Extra terrestrial? Science we haven’t learnt yet - the dimensions they talk about in quantum physics? >
15/ Do people stay sentient after they die? Are they the same personality in a different form? Do they remember us? Haunt us? Protect us? Are they reincarnated and forget us? Maybe they wake up in a pod as they disengage from the matrix 😳 I don’t know. >
16/ I do know that Mum’s ashes were scattered in the garden of remembrance in Redditch. Somewhere in that garden her ashes mixed with the soil, the have nourished a plant, blades of grass, a tree… a living, breathing part of this world. She literally lives on. 💜💜💜
1.Lots of feelings today. I’m in the middle of trying to officially get discrimination and inequality recognised. It’s really hard. I’m so fucking tired and sad. I want to fast forward to an open court where I get to say what’s happened and it’s done & over whether I win or not >
2. I’d have been happy with a systems change that would have addressed inequality. Most people can’t cope with how awful this process is and you never hear about other Lived Experience Professionals (Researchers, Peer Workers etc) who have raised grievances because >
3. organisations often give a settlement payment to keep it from going to tribunal. I don’t think anyone could offer me a big enough sum to do that. It would need to be so big they’d never, ever do that again to anybody because they couldn’t afford to. >
1. Back when I was diagnosed with EUPD in 2005 I did the usual Google thing & found @Quora. I’ve never bothered unsubscribing & I keep getting email bulletins with Q&As from people who detest ‘toxic Borderlines’ and are rampant Royalists. Yet I STILL haven’t unsubscribed >
2. It winds the everlasting f* out of me, I get torn between responding to the worst of the bile & misinformation posted (bad idea: too much energy), to unsubscribe (good idea💡) or to observe occasionally (brave: a step outside my personal social media echo chamber) >
3. It’s also a reminder that even for most of the differences of opinions on Personality Disorder/‘Personality Disorder’/Trauma & it’s treatments, most of the people (clinicians/non-clinicians) taking part in these conversations care enough to do so, whether we agree or disagree>
1. MENTAL HEALTH CHARITIES: A thread. The frustrating thing about charities & govt funded orgs is they are gagged to remain neutral. The causes, triggers & worst stressors of mental health issues are social, environmental, political. Roof over head, disability benefit, etc >
2. Yet charities can’t comment. So all the resource and funding goes to orgs who structurally are prevented from helping where it is needed most - they can try to soothe the trauma a bit but not get anywhere near stopping it. This means that the only way to really do that is by >
3. not being a charity, because if that’s what you are, you become pretty useless when govt policies lead to thousands of deaths of people with mental health conditions and you want to organise a special day or coffee morning to chat about mental health. Some organisations like >
1.Why do clinicians not tell you about what your #epilepsy symptoms are? Just woke up from a reset sleep but it’s led to morbid curiosity Googling. Those weird head sensations I get are called ichtal headaches. There are 3 types: pre, post & ones without seizures. I reckon I get>
2/ all 3, but I’ve never heard of them before, even though I’ve definitely described them to my #epilepsy consultant. I’ve felt like a bit of a knob, trying to describe the odd sensation that I call an ‘epilepsy head’ and how I can tell it’s different to ‘normal’ or a headache. >
3/When I get asked how I can tell I always feel like I’m coming across as a hypochondriac exaggerating a symptom. There it is, in black & white, on Google, so it must be true (tbf, the sources I was reading were peer reviewed articles😜) Seriously, why don’t medics tell patients>
1.There is something so heartening about seeing a Tweet that acknowledges that the issues #LXPs have are real & they do have an impact. Because discrimination usually isn’t acknowledged #LXPs never get to hear the words “I’m Sorry” as a genuine apology as opposed to being in the>
2. context of ‘your perception’ being skewed or ‘your feelings’ being hurt, which is like a backhanded way of being told that the way you are being treated is caused by you & not the people doing it to you. It places fault back with you, rather than being the responsibility >
3. of people accountable within organisations to change discriminatory behaviours. It lets people who lead organisations off the hook if there’s no acknowledgement an issue exists, because then there are no national campaigns to appease, no pesky equalities targets to reach. >
1. The #BPD label & diagnosis: a thread. At this years #BIGSPD21 Ian & @JaneCannonMBE gave a presentation describing the experience of losing both of their teenage twin daughters to suicide. She & her husband have campaigned for young people to be able to be diagnosed with #BPD >
2. to be able to access appropriate services. Their daughters Chris & Sam were constantly being told that because their problem was not an ‘illness’ that could be medicated, they could not access any treatment. Both had all of the main symptoms that fit a #BPD diagnosis & >
3. struggled to manage the emotional turmoil they felt with self harm & suicide attempts. The interesting thing is they both wanted the diagnosis in order to be able to access services. They both rejected the idea of services for trauma and instead wanted ones that were for >