Thursday, 18 May 2017

One year on

Today is a really difficult day for me, and I'm sure others. A year ago today I lost one of my closest friends, Sarah Ellis, we joked about being twins, we spoke daily, and then suddenly you were snatched from us. This year has been so hard without you Sarah, every day I wish you were still here with us, that your illnesses didn't snatch you away so cruelly when you'd battled so so hard. My world broke that day. But today I was to choose to remember the positive times we shared, the lessons you taught me about being stronger than the illnesses, about fighting with other all your might, the funny times you made me laugh or we were silly, the times you'd stay up all night just to get me through the night or persuade me to stay for treatment. You brightened my life so much, I only wish you could have kept doing so, but your light and love with always be with me, and the keepsakes and happy times we had will keep me going, I know you would want that. I went and purchased this today in memory of you, it glints purple in the light, your favourite colour, and it's the friendship charm, it says friendship on the silver. I love you so much and miss you just as much. A year on its no easier. Love you Sarah my angel

Please, if your suicidal or struggling with your mental health please please reach out, to me, to a friend, to family, to a teacher or doctor, or to samaritans (116 123). You are not alone. 💕
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Wednesday, 17 May 2017

To the lady who encouraged her son to ask me about my wheelchair.

To the lady who encouraged her son to ask me about my wheelchair. 
Thank you! Often when a child asks a question about me or my chair the parents blush, they - sometimes quite forcefully - silence their child and avoid eye contact. But when your child asked how my chair could move itself you didn't wince or cringe, you didn't silence him, you encouraged and helped him to ask me whether my chair could move itself, your brilliant little lad took interest in how it worked as I explained the joystick and his little face looked so intruiged, you then went on to say how cool it is that it can help me get around, and your son - satisfied by the conversation - moved on. You smiled and thanked me for speaking to your child, but actually I want to thank you! Thank you for encouraging your son to speak to me rather than forcing him to shut up and pretending he hadn't asked questions. Thank you for engaging in conversation with him and with me about what my chair is and how it works, and making me feel like anyone else. Thank you for exclaiming to your son how cool it is that it can help me go places. Thank you for not apologising or shaming your child's inquisitive nature. Children have such a pure genuine interest, I am always happy to answer their questions, I've never had   child be belittling or acusatory, they just genuinly want to know!
Thank you!
Love from
The girl in the chair.

Monday, 15 May 2017

Wheelchair things!

So I've had my powerchair since February and these are some of the things I've noticed! 
Paths are really bumpy, and don't get me started on cobbles! I've decided it counts as a work out like those vibrating plate things! 
People can be really kind and helpful, if you can't reach something or your having trouble someone will probably offer to help :) 
Thursdays are now a new form of torture thanks to bin day. On the plus side I'm an expert on moving bins and hand sanitising whilst steering. 
Yeovil is great going to places and horrible going home - HILLS!!!! 
Road works are amazing because you feel special when your going faster than the cars! 
Wind = leaves in face. 
Not all drop curbs are dropped. 
Slanted bits off path, like where they are sloped for driveways are a bit tricky to start with because the chair naturally wants to go down the slope but down the slope is the road. Not a good plan! 
I've become very friendly with some overgrown hedges.
If your struggling to so some tricky turning or go backwards through or on something narrow (taxi ramps) people ask if your drunk a lot. 
"Don't drink and drive" 🙄
"are you allowed to use your phone while driving?" It may be built like a tank but im not driving a car. 
However I am insured if I run you over, the powerchair delivery man kindly informed me. 
People Park illegally a lot, and that means we get stuck a lot cus we can't go round them. 
Lots of people don't indicate, and we can't just start going and speed up if someone comes, the chair has a limited speed, so crossing roads can be harder! 
Wheelchairs come with their own superpower where they sometimes (and not in a good way) make you become invisible. 
Head rests are good in theory, but when mixed with bumpy paths could easily lead to concussion. 
Buggy accessories are essentially as suitable for wheelchairs as they are buggys. 
I have a good side and a bad side of my chair. One looks like a dogs tried to eat it (someone told me a dog had been at it, I had to explain that nope that's just my bad side!), the other looks fine! 
Wheelchair modification is theoretically very exciting until you realise there is literally nothing out there to easily modify or decorate it. Unless you want to wear a giant navy blue poncho. 
Lifts break a lot and people don't always get them fixed - BUT GOODS LIFTS ARE A THING!!! Just face your social anxiety and ask someone! 
Chair anxiety is a thing - first time you see someone in your chair? ANXIETY. First time you go somewhere in your chair? ANXIETY. Attempting to get the bus? ANXIETY. Trying to do difficult manoeuvres with someone watching? ANXIETY. 

Don't try and lift the chair, it's the weight of two humans. 

Saturday, 6 May 2017

The mental illness that tried to kill me.

May is awareness month for many different things! THIS BLOG IS GOING TO CONTAIN MANY POTENTIALLY TRIGGERING TOPICS. One of which is Borderline personality disorder (BPD), which is also sometimes known as Emotionally Unstable Personality Disorder. BPD is characterised by extremely intense emotions that are unstable and change rapidly; fear of abandonment; being unsure of who you are/not having a strong sense of self; impulsive actions; self harm and suicidal thoughts and behaviours; feelings of emptiness and loneliness; and paranoia and/or psychotic experiences and dissociation. Not everyone with BPD experiences all of these, but I get must experience at least 5. It's also often comorbid with depression, anxiety disorders, substance abuse, eating disorders and PTSD. It is prevalent in 2-3% of the population. 

BPD can be a lot more deadly than people realise, the suicide rate is approximately 50 times higher than in the general population, and 1 in 10 will end their lives through suicide. 73% of people with BPD have attempted suicide, with the avergae number of attempts a person with BPD makes is 3.4. 

I am someone who has BPD, who is part of that 73% that have attempted suicide - more than the average apparently. I am also someone that has lost 5 friends to suicide, a number of which had a battle with BPD. I have had many labels put on me, as have many I know, "chronic self harm", "extremely high risk of accidental death", "unmanageable high risk". What this means is that the risk level and presentation is not 'manageable' and therefore there is little that can be done. Gutting to hear, that they think you'll probably die, from an illness not considered lethal. Scary. When I am not suicidal I am terrified of what I might do when I am. 

In a similar way, when im in am extreme high mood, I do things I normally wouldn't and probably shouldn't, or sign myself up for things, that are not possible for me to actually do, and when im not extremely high in mood I'm scared what I will sign myself up for or attempt to do when I am! 

Another side to BPD that no one really talks about is the paranoia, psychosis and dissociation. More scary stuff. Have you ever been convinced that there is a time portal and monsters are going to come through it and take over the world if you don't stop them? No? What about believing you can fly? No? What about trying to save someone in grave danger only to later be told you've been speaking to and gesturing to thin air? No? Tried to take an injured child to the hospital and then been informed that you are not actually holding a child? No? Well that's some of the reality of psychosis, which can be a very real part of BPD. Dissociation plays a big role too, it means becoming detached from reality or cut off from yourself. It can be something like detaching emotionally from a trauma and it feeling like it happened to somewhere else, or something a bit more risky, like coming back round to reality in a car park in your pj's and socks at 11pm in December with no recollection of how you got there or what you are doing! 

I'm not writing this to terrify you, I terrify people enough as it is!! But this is reality for those of us with BPD. I want to talk about somethings that help, things you can do if you have BPD, things you can do for people you care about with BPD and things you can help the person you care about with BPD do! 

Firstly, don't recoil, act disgusted or repulsed, we are self conscious enough even if it's not until after the event or outburst or episode! Just be gentle with us, if we talk nonsense that's OK, don't straight up tell us we are rediculous, remind us what is and isn't real to you and others around, ask us questions, get us to focus on things in the hear and now, what can we taste, see, smell, feel? 

If you or someone you care about is doing or has done DBT then learning some of these skills can help, you can prompt them in a crisis when they aren't thinking clearly.

If our moods change suddenly or seem inappropriate, please don't judge us, we have no control over our emotions, we can sometimes choose how we respond to them, other times we just react before we can think. Try and practice or help others practice stopping and thinking then acting, people with BPD can really struggle with this and may act before they can stop and think. 

Don't be afraid to ask questions, it helps us if you understand more, but please respect our decision if we don't feel ready to open up or explain something. 

If we are unsafe try to talk us round to getting to safety ourselves or asking for help ourselves, if this isn't possible and we aren't safe then it may be necessary to intervene, over time you learn more about when it helps to intervene, if in doubt ask for help, whether that's the local crisis team or CMHT duty worker, going to A&E, if required calling an ambulance or the police. Sometimes we may be unable to get ourselves help, or may be unwilling to, but it's important for our safety, please do help us get help if we need it, it could save a life. 

Small things mean a lot, not just to people with BPD, but to most people, a simple card, a positive quote or post on someone's social media, a text, a small gift or care package, even just tagging someone in a meme can really brighten someone's day, and help them feel less alone and more connected to the world. 

Invite us to things, but don't be offended if we aren't up to it, dealing with all this can be exhausting and that's without any other mental or physical struggles on top. We may not always be able to make it, we may need rest, space or some self care time, but please keep inviting us, it means the world to us! 

I'm going to leave it there for today, I could talk about BPD for a lot longer, and I'm happy to answer any questions! Thank you for reading and thank you for being supportive to me and others struggling with BPD.