Thursday, 28 December 2017

The Danger of Invalidating

There's been something recently that's been getting to me more and more. It's something I am regularly told and hear others being regularly told too, it makes the situation worse and doesn't help anyone. What is it? It's telling people that they 'can't really feel that way or they wouldn't have done x y or z'. X y and z being things like asking for help, or telling someone. It pushes the line of thinking that we have to prove ourselves and not in a positive way. It affirms to us that we won't be believed, that our feelings aren't real and valid and painful unless we act on them and do nothing to hinder those actions intentionally or unintentionally. And to be honest with you it's a load of bollocks. 

Have you wanted to hit someone but also wanted to not hit them, possibly for fear of the consequences? Or wanted to lose weight but also wanted to eat something that would hinder that? If someone told you you didn't actually feel the desire to lose weight unless you lost it you would think that was ludicrous. Mostly we accept that we don't always act on our feelings or desires, or that at times we don't really think through our actions, or that we can have conflicting emotions. However when it comes to mental health, mental illness and suicide we are pushed into a corner by professionals and others around us telling us we aren't suicidal unless we are killing ourselves. That we don't want to die if we have reached out for help. That we don't feel how we do or have the urges we do unless we act on them. And that is a dangerous game to play when someones already struggling. When pushed, a significant number of people will do something to prove they feel how they do when accused of lying or not feeling it. And yes that can be a positive if the challenge is getting them to a better place, but when used with suicide or self harm or other similar things in times of crisis it often leads to disaster. Yet time after time it seems that professionals and to some degree as a society we put a rule on this that we don't feel it unless we prove it. That we can only feel ONE thing, only desire ONE outcome. That's simply not true. I'm sure we have all felt conflicting emotions or urges at one time or another. These situations are no different. It is possible to desperately long to end your life, and also be scared of hurting people, and having both doesn't invalidate either. A lot of people with mental illness or difficulties have been invalidated and pushed down their whole lives, accused of lying, told they're emotions, feelings and thoughts are wrong or don't matter, and by saying those things your confirming to they're minds that they're feelings are still unimportant and invalid. 


So next time you go to tell someone of they really wanted to die they'd just do it/get on with it/have kept quiet, stop and think. It isn't going to help. Try validating them instead, tell them you can see how awful that must feel, that it must be so difficult, but that it won't last forever and that it isn't their only desire. Words are important. What we say makes a difference. Acknowledge people, they're thoughts and feelings and difficulties and everything else. Your words can make a positive difference, and help someone not take their life. 

Hope your all as OK as can be
L x

Saturday, 25 November 2017

A gadget toy or an essential part of daily life?

I’ve recently noticed a lot that I and others similar to me (in the sense that they have a chronic illness) can be quite judged for having lots of ‘gadgets’ around their home, from hot water machines to robot hoovers. People can be really critical of us for spending money on something they believe to be non essential or just a toy or novelty. But for us there is so much more to what we buy and why than it just being cool or fun.

I’m sure many of you know I have multiple chronic conditions, including Ehlers Danlos Syndrome, POTS and CCI. Managing these day to day is a challenge, I won’t lie! There are somethings I (and others) simply can’t manage because of illness, whether thats chopping vegetables, lifting a kettle, or holding a hoover. We simply can’t do some of those simple things because it leaves us with great pain and fatigue, or dislocations, to we may have some numbness, weakness or paralysis. So the only way to get those things done is to get someone else to do it, right? Well not all of us live with others, many of us live alone, and many of us don’t have, aren’t eligible for, or simply can’t get help with these things from carers or support workers. So we may buy ‘gadgets’ to help us, things that allow us to take part in activities others can do in a way that is suitable for us, whether thats cooking, or maintaining a tidy home, or many other things. Our gadgets make our lives more idependent and less frustrating, dangerous to our health, and depressing. 

One example would be having a Breville Hot Cup as opposed to a kettle. For those that don’t know a Brevile hot cup is filled with cold water (I fill mine with a small mug at a time so its not too heavy for me), you then press the boil button and put a cup under the tap bit and when the water has boiled it releases a standard UK mug size amount of boiling water straight into your mug. For most people that would be considered a gadget, a luxury, an expense that is unecessary because kettles are cheaper right? Not for everyone. I mean yes a kettle is cheaper on your finances as a one off purchase, but if you can’t operate a kettle safely then the cost to your health it could have is greater than the cost of a ‘gadget’. I dropped boiling water on my foot last year, my condition meant that I dropped it and I has second degree burns, which were almost third degree, from just wanting a coffee, and I spent the night in hospital as a result. For me, lifting a heavy kettle full of boiling water is a hazard, especially now I have very little feeling in my legs, so if it happened now I wouldn’t necessarily noticed my foot was being burned. Whereas with the hot cup I can have hot drinks again, because the risk of carrying boiling water in large heavy amounts isn’t there, its just a small mug, which is so much less of a risk! Still unnecessary and a luxury? Not so much! So please, don’t judge us for having many appliances and ‘gadgets’, or for ordering ready made meals, and similar things, because to us they are enabling us to do what you take for granted! Living with a disability is incredibly expensive, and also difficult and frustrating, try not to add to our frustrations and pains with your judgement!

I’m going to do some posts in the weeks and months to come about things that have helped me manage, and things Ive tried that perhaps didn’t help! Mainly products and ‘gadgets’ but also foods or other things too!

Hope your all as well as possible!

L xx

Sunday, 29 October 2017

New Diagnoses

As I touched on in my previous post I have recently been given new diagnoses. In some ways they aren’t new, and have been suspected for a while now, but I needed to see someone specialist enough to assess and get official diagnoses! 

We (me and my team) have suspected I had Ehlers Danlos Syndrome type 3 for quite some time now, along with associated conditions, however no one here was specialist enough to diagnose EDS locally - its nearly impossible to get an official diagnosis here, and to get a referral to the EDS specialist is nearly impossible without a diagnosis, so we became stuck in a loop while my body increasingly misbehaved and no one knew how to really help. In the end I was told my best option was to see Professor Grahame - the UKs EDS specialist - privately for an assessment appointment. I then got in touch with Professor Grahame and his secretary and discussed whether it’d be worth me going to see them, which it was agreed it very much would help and that he would be able to diagnose and write a report with what should happen next in my care. Yay! Finally getting somewhere! Thats when it hit me that I’d need to find the money, not something I have in abundance, but with friends help I managed to raise enough to go on a gofundme page, and you pay on the day so I could book in advance, I just then had to find the money. 

During that time I faced a lot of unexpected hate and belittling, I had a lot of people speak to me who have chronic illnesses themselves but placed judgement on me for going with what had been recommend to me by medical professionals. Many were adamant that if I needed to see Professor Grahame then the NHS would have referred me. If only the system actually worked that way. Unfortunately it doesn’t, and the NHS is incredibly stretched, and EDS is not very well known about, and policy can block the way to many many things that would potentially help. I only mention this because I know that others may go through similar judgement if this is the route they end up needing to go down. The reality is that you have to do what is best for you and for your health, and I wasn’t going to let the judgement of others stop me doing what could potentially help me more than anything else, especially when the professionals say its the right thing. 

Waiting for that appointment to come round was hard, very very hard! I tried to keep a diary of everything in the mean time, I asked others I knew who had been for any tips on making the most out of it, but I was so nervous. The day finally arrived and off we went to The Hypermobility Clinic! To put it simply, I needn’t have been anxious! Professor Grahame was the best doctor I’ve ever seen, and also probably the oldest! An incredibly wise man! We went through various questions and examinations, he took some photos of me for his medical journal (once he found out how his phone camera worked) and did some measurements. He diagnosed me with Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome and Craniocervial instability (that will be further confirmed and looked at after more testing). He apologised for the medical profession that I’d been so let down with regards to diagnosis and treatment when I’d been showing the key signs for at least 18 years, and stated that it isn’t all that uncommon unfortunately. He is organising various referrals through my GP and I will likely see him again through the NHS now I have diagnoses. 

So what are these conditions? I’ll be writing about them in another post soon, I don’t want to overload one post!

Love to you all


L x

Thursday, 26 October 2017

How to know if someone you work with has a personality disorder

Recently a large newspaper wrote an article with the same title as above. The article was filled with stigma and was very damaging. It was taken down and a statement was released by time to change, and I hope an apology will follow soon. But this is a topic close to my heart, having a personality disorder myself.

So how can you know if someone you work with has a personality disorder? The best way to determine this is by getting to know someone over time, listening to them, and being open to talk about mental health - the positive and the negative! There is no foolproof way to identify a person who has a personality disorder, other than them telling you that they have that diagnosis. If your worried about a colleague then offer support, see if you can do anything to help, pop a little note or email to them to make sure they know they’re no alone and its OK to speak out. Equally give them time, they may need time before they feel able to disclose something like that.

It may also help to familiarise yourself with different areas of mental health, both for you and your colleagues sake. Explore what can increase mental wellbeing and what can decrease it. If you know someone struggles with a particular disorder or illness then ask them what its like for them, or go to information pages like mind, rethink and more. Remember everyone is different and unique, a personality disorder or other mental health condition may be a part of they’re life, but get to know them as a person, not just diagnostic criteria. 

What is a personality disorder? When we talk about personality within psychology and psychiatry we aren’t looking at what general society refer to when using the word personality. We often think of personality linked to words like bubbly, caring, compassionate, rude, aggressive, in your face ect. If we take that as what is disordered that would be incredibly damaging, telling someone that who they are is disordered in some ways. However in psychology and psychiatry personality means the way in which we deal with life difficulties. So a personality disorder is a disorder/difficulty that effects the way we deal with life difficulties. Its an important thing for people to know, but often its not talked about, whether thats because of lack on knowledge or stigma. 

I have borderline personality disorder, sometimes known as emotionally unstable personality disorder. The key symptoms are emotional instability, and rapid changes; emotions being extremely intense; difficulties with impulse control; chronic emptiness or unstable sense of self; self harm; suicidal tendencies; splitting (having conflicting urges, impulses, desires and not being able to choose one); and more. These are all things that make some aspects of my life harder, however there are ways in which these parts of my mind can be used as a positive such as being fiercely loyal and committed; gaining emotional intelligence and wisdom through what we go through; being empathetic and deeply caring; being able to see things from multiple view points; and many more! 

So to sum it up for you:
1 - talk to your colleagues and friends about mental health
2 - invest time in knowing more about mental health and mental ill health
3 - if someone you care about has a particular disorder or illness look it up, ask them about it, familiarise yourself
4 - remember everyone is an important, valid individual who has they’re own struggles and experiences that shape them

Love to you all


L x

Saturday, 21 October 2017

Blogging again?

Hello!

I am aware I haven’t been blogging as much recently, life has been a challenge, but I feel quite passionately that more awareness, understanding and insight needs to be out there for those with complex and chronic conditions. I’m aiming to blog mostly about my conditions and the ups and downs, the things that help and the things that don’t, the things others don’t realise, and tackle some stigma that is there around having these conditions. I also want to put out there the kind of information, resources and helpful tips I wish someone had told me when things first deteriorated!

So a brief update, which I will do further posts about at a later date; I have recently had my official diagnoses of EDS-3, POTS and CCI (don’t worry I will explain those shortly!) by Professor Grahame; I have also been journeying through the process of finding suitable accommodation; I passed my first year of OU and have started my second; and many other things I’m sure will be spoken about in due course!

A brief guide to abbreviations:
EDS = Ehlers Danlos Syndrome
POTS/PoTS = Postural Orthostatic Tachycardia Syndrome/Postural Tachycardia Syndrome
CCI = Cranio-cervical Instability.

Also, if there are any specific topics you want covered just let me know and I’ll see what I can do!

Love to you all!


L x

Thursday, 27 July 2017

Wheelicorn

So, a project I have been working on recently is opening up a teemill site to raise some money towards getting the equipment and treatment I need for my EDS, most urgently a suitable wheelchair to use inside as mine doesn't fit, also to see Professor Grahame the UK EDS specialist. So here are some of the designs, you can go over and take a look, and purchase what you love most, share it around too - spread the love! I am still working on more designs, so keep your eyes open!
This is the logo I designed, which is on all the products at the moment! Here are also some of the products!









Tuesday, 25 July 2017

URGENTLY NEED A WHEELCHAIR

I'm Lizzi and I'm 23, living in Somerset UK. I URGENTLY NEED A NEW WHEELCHAIR AND TO SEE THE UK EDS SPECIALIST.
I have multiple chronic illnesses and disorders, including Joint hypermobility syndrome, POTS, functional disorders, seizures, allergies, and as of yet undiagnosed neurological problems, im also under investigation for Ehlers-danlos syndrome and CCI. This means I am in constant pain and have dislocations multiple times a day, which also lead to seizures and more pain. 
I URGENTLY NEED A NEW WHEELCHAIR! 
Locally they won't provide a suitable wheelchair for my needs, and I cannot afford to buy one straight up for use inside my home and transporting to enable me to go out with friends. It would also enable me to start dancing again, which helps with both my physical health and my mental state. I need to raise £3000 for a lightweight self propelling wheelchair that folds but has a footplate, any small amount you could give i would really appreciate! 
I also desperatly need to see Professor Grahame the UK EDS specialisthowever this is NOT possible on the NHS, I have an appointment booked for October however I still need to fund this, which is £350 without travel and expenses taken into account. 
It is likely that there will be further expenses on this journey, all money will go towards helping me get as normal of a life as possible.
You can also check out my depop (elizadoda) where I'm selling lots of things to try and raise this money!

YOU CAN DONATE BY CLICKING HERE!

Wednesday, 12 July 2017

Why do I pay for my powerchair?

A question I got asked a lot when I first got my powerchair was why I didn't or couldn't get it on the NHS. Most people assume that the NHS provide everything that we need with relation to health, and that if they don't then its because we don't actually need it or they don't think we will benefit from it, but that couldn't be more wrong. Now don't get my wrong, the NHS does its absolute best for all of us and we are so so fortunate to have that system in the UK, but it is of course limited by money and funding as to what it can offer, whether thats treatments, equipment, services, it can't provide everything people need, especially when there are complex needs involved!

I'll start with the reason I need a powerchair! I have multiple chronic and complex conditions, and more under investigation, the main ones being EDS-HT (Ehlers Danlos Syndrome Hypermobility Type), POTS (postural orthostatic tachycardia syndrome), functional disorders, and seizures, all of which are quite disabling. My mobility has continuously decreased, with increased pain and fatigue, and I found myself not leaving my flat much because I couldn't walk far with my crutches but also hadn't any other way of getting about. Spending more and more time in bed and at home was having a big negative effect on my mental health too, as often happens in these circumstances. So I decided that I was no longer going to care what people did or didn't think about me using a wheelchair/powerchair when I needed to.

So now I knew I needed a chair if I was going to do anything more than lay in bed or sit on the sofa, but there is a whole lot of things to consider when wheelchairs become necessary! First one being how do I get a chair thats suitable for me? Wheelchair services is the first point of call, but often they can't provide adequate chairs, especially if your condition is complex or it varies, and I was told that I couldn't get a wheelchair from them because I wasn't paralyzed. So with that option gone I had to start looking to buy one myself, or rent one. Motability? Loans? Fundraising? Charities? Hire Purchase? There are so many things to look at. First I looked at notability as I am eligible due to being awarded PIP, a suitable powerchair for my needs was going to be around £40+ a week, so thats £120+ a month, which is a lot of money! Loans are difficult when you don't have a credit history, I simply didn't have enough credit things they could check apparently. I looked into fundraising and charities, most charities out there are for children in need of wheelchairs and I'm not the greatest at fundraising. So Hire purchase seemed like the best way. Then to choose a suitable chair, I needed electric, with leg raisers, tilt and recline that can go a fair distance! The Pride Fusion was the best option for me, and on hire purchase it was HALF THE PRICE OF MOTABILITY and you get to KEEP the chair once its paid off!

The chair was delivered within a few days, and I was shown how to use it and given instructions and insurance - they even said if I ran someone over and got sued I was covered, so watch your toes ;) - and then it was time to use it! Of course me being me I threw myself in at the deep end and went to London to the Lush Summit on my first proper day using the chair, I got the hang of it, sometimes! I did get asked if I was drunk 3 times, all while attempting to go backwards down a ramp I couldn't see, I almost told them to try and do better, but decided better of it!

The chair has given me some freedom back in my life, I can go to Lidl, I can go to the corner shop if I run out of electric, I can do more than stay in bed when in a POTS flare, and much more! Honestly I wish I'd taken the step sooner, but I'm just glad I took it at all! I now have another battle on my hands now that I need my wheelchair indoors a lot and my pride fusion just doesn't fit, along with the hectic nature of having to find somewhere else to live! Hope this has been informative!


Friday, 2 June 2017

DBT therapy.

What is DBT therapy?
DBT stands for dialectical behavioral therapy! Still none the wiser? Dialectics look at different view points on the same topic or situation - for example to people facing opposite directions will have a different view what the world looks like in that location! Behavioral looks at your behavior, and well, therapy is kinda self explanatory! So bringing that together DBT is a therapy that involves looking at different viewpoints or perspectives on topics and issues and how these effect our behavior. For example, because of my life experience when someone is looking in my direction and laughing I assume they are laughing at me, which triggers thoughts and behaviors, however someone with different life experience might have a very different response and look around to see what is being laughed at so they can laugh too. It's made up of skills therapy, where you learn skills, often in a group setting, and practice them day to day, and one on one therapy (this isn't always offered, especially on the nhs, and I didn't have this, but the skills were still helpful). 

Who made DBT? 
Marsha Linehan founded DBT for her patients with borderline personality disorder, something she had firsthand experience of as a sufferer herself, and it was also something she practiced herself.

Who can it help? 
DBT was designed to help people with borderline personality disorder, a disorder characterized by emotional instability, unstable relationships, and intense emotions among other things. However it isn't limited to being used for BPD, it's also used in eating disorder treatment. Personally I don't think there is anyone out there who couldn't benefit from at least one of the DBT skills, and many would benefit from most of them. Like with any therapy you do have to be committed, but if you are it can really help.

How is it structured? 
This will vary from place to place. When I did DBT we met once a week for 2 hours at the local mental health outpatients. During this time we would have 2 minutes each to give a summary of the skills we had used this week and how effective they were from our diary cards (more on them later!), then we would start to learn about the skills that were designated to this week (part way through this we would have a break for fags, coffee, toilet ect), and then finally we would be given our homework! Homework consisted of diary cards and sometimes a sheet to help us to work through the skill we were focusing on that week. Diary cards are a card where you track your urges, behaviors, emotions and the skills you used each week, they are a key part of the therapy, and in my experience those who don't do them struggle to participate in the therapy and often drop out. It is a years programme here, which covers every skill twice, in 6 week topics with 2 weeks mindfulness in between. 

So what are these skills? 
DBT covers 4 topics, distress tolerance, interpersonal effectiveness, emotional regulation and mindfulness. 
Within distress tolerance we look at the skills distraction, self soothing, improving the moment, radical acceptance, pros and cons, STOP, and TIP. Distress tolerance skills are used to manage difficult emotions, thoughts, and experiences, and to get you through crisis or difficult times. 
Within interpersonal effectiveness we look at DEAR MAN (used to get your needs met), GIVE (used to maintain relationships), FAST (to maintain self respect), and intensity of asking. Interpersonal effectiveness is aimed at trying to help communicate effectively in order to create, maintain and end relationships we want to in a healthy way. 
Emotional regulation looks at Accumulating positives, building mastery, coping ahead, and PLEASE (setting a baseline for more stable emotions). Emotional regulations purpose is to aid you to set a base for your life which helps to lower the intensity of emotions, the day to day basics that help you get or stay well. 
In mindfulness we look at emotional mind, rational mind and wise mind; observing, describing and participating; being non judgmental; living one mindfully; and doing what is effective. Mindfulness has many purposes, including getting through crises, being more connected and aware in daily life, learning to ride the wave of emotions, learning to let your thoughts be and not act on them, and more! 
I'm working on blogs that go into these in more depth, so that is to come for anyone interested!

Does DBT help?
Short answer is YES! Not all therapies are for everyone, but everyone I know who has completed DBT has benefited from it in some way, most in many ways! Personally it had a huge impact on my quality of life, it didn't cure me, I've had more other therapies since and am awaiting more treatment, but it's highly likely I'd be dead if I hadn't done DBT, that's not me being dramatic, that was my reality. DBT helped me be able to STOP and THINK, then act - instead of ACTING them STOPING and THINKING (oh crap!), which is something many with BPD struggle with, and many others. I learnt to be able to ask when I needed help instead of denying myself or thinking if I asked I could be rejected so best not to ask! I'm also much better now at riding the waves of emotion and letting my thoughts just be thoughts most of the time. My life is less chaotic and my base of day to day is more stable most of the time. I was quoted when I finished DBT saying

"I'm now living more days than I'm surviving"

Is it hard?
It depends what you mean by hard! The concepts and skills are not hard to understand, however they do take a lot of practice, and not just when you need them, you have to practice when you don't need them in order to build strong neural pathways for when you do need them. 

What use are skills really?
Skills are incredibly useful if you utilize them. Our brains often take us very quickly from emotion to action when an emotion is triggered, like a motorway (neural pathway) in our brains that is built on years of repetition, whether that's self harm, drugs, drinking, smoking, skin picking ect. With DBT we are trying to build more healthy neural pathways in our brains for when different things are triggered, however we can't just do it once and expect a motorway, it takes a lot of repetition to get a motorway. The skills will start out as dirt tracks, they may be a bit bumpy and uncomfortable, but keep doing them and you'll soon have a B road which is a bit smoother but still doesn't come automatically, keep practicing and you'll soon have an A road, a bit quicker still but keep practicing and you'll eventually have a new motorway, a new way of coping and dealing with an emotion that benefits you in the long term rather than hindering you!

What happens when you finish DBT?
When you've finished going to group after a year it can be a bit of a shock, you'll probably miss it at first, I know I did, especially the people I'd met.ive kept in contact with a few, 3 of us meet once a month in a local cafe who have a room reserved for us and go over a skill each month taking it in turns to bring some thoughts around the designated skill and a mindfulness activity, to help us keep on with practicing our skills. I'm one for journaling, so for me my life post DBT included writing in my journal a diary card type summary of each day, with skills used and emotions and behaviors tracked. I'm now actually back to filling out diary cards again, as my current care co-ordinator is the local personality disorder lead who is responsible for DBT where I live, which is very helpful! But essentially, if you want the positives to keep coming you've got to keep practicing! You may also be able to do a short course top up within primary care, I did, and it definitely helped to go over the skills, and learn the new ones as more were added shortly after I left the group. 

I can't get DBT on the NHS/where I live/for my condition/for another reason.
DBT isn't very well funded, especially within the NHS because it's fairly new to the U.K. In terms of therapies, it is done for personality disorders and eating disorders in secondary care, but they do also do some groups in primary care, they don't call them DBT though, it's often called emotional skills group, but the skills are DBT skills. If you have a care co-ordinator then ask if DBT is available, if they don't know ask if it's possible to meet or speak to your local personality disorder specialist. But if you can't get DBT on the NHS then it's definitely worth having a look online, you can get a lot of information and the skills online, or purchase the books on amazon and teach yourself, if you need any help or support or don't understand something let me know and I'll see what I can do! Also, in my upcoming blogs I will be delving deeper into the skills. 

This is only my experience, and based on what I have learned, but I hope it gives you a clearer idea of DBT.

Also a quick note, I am in the process of changing my surname, so if that comes up that is why! I have also changed the blog address, to coincide with a summer project, and it will be staying as lizzispeaks for the foreseeable future (I have no plans on changing it!).

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
💕
Here

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. 


Saturday, 1 April 2017

Fears and phobias.

I feel I should warn you before we go on that this is going to be a very blunt and to the point post, so please if you find mental health related content triggering then proceed with caution.

I've recently been struck by just how different fears and phobias are, and how many people assume a phobia is the same as a fear. For me they are on the same spectrum, but a phobia is a whole different level. Mostly we avoid things we fear in a general sense, like death, a lot of people fear death, we would avoid death in a general way, like avoiding poisons or adhering to safety instructions, but it doesn't dictate your life. A phobia takes over everything, every waking moment, every decision made has to take the phobia into consideration.

My phobia is called emetophobia, and it's a fear of sick, of being sick, feeling sick, seeing sick, other people feeling sick, other people being sick, basically anything sick related. It effects so much of my life, although I try to keep it hidden I feel it's something that needs talking about so people can understand.

When I think about my life, it is limited and controlled by rules my brain inflicts on me to avoid sick. Public transport used to be a complete no, couldn't do it, couldn't get on it, what if someone feels sick or is sick? Travelling with children is a no the majority of the time, children are unpredictable when it comes to sick and travel sickness. This can exclude me from so so many social events.

Travel is just one aspect, what about careers? (Exclude the fact that there are other conditions affecting this)! Want to be a teacher? Nope children get sick. Want to be a nurse? Nope. Want to b work in transport? Nope (as mentioned above). Want to work in a cafe? Nope, people still get sick there. What about a supermarket? Nope people get sick there too. I love working with children but it also completely terrifies me.

My fear doesn't just involve seeing it. Someone sniffing, coughing, groaning, anything that could indicate they are not 100% and I will freak out. Going on nights out is another nightmare. Any mention of sick at all is enough to spin me into a panic.

It effects everything. One example is not long ago I went to a time to change training event, which meant staying in a hotel in London and then attending training the following day, nothing scary about that right? No obvious sick producing activities. Seems safe. Late in the evening we returned to the hotel, I'd had a bad day but that's a whole different story, and when we went to get in the lift someone had been sick in it. Queue panic. I shut down. No words. No eye contact. Thankfully there was two lifts (can't use stairs, wheelchair problems). We got in the other one. I got back to room asap. Locked myself in the toilet with the lights off (so I couldn't see anything bad). My brain spirals, it triggers other aspects of my mental health, including my psychosis. I'm confronted by a voice telling me 2 things, "this will keep happening and things will keep getting worse unless you severely self harm and set yourself on fire to cleanse the bad". Thankfully I wasn't alone in the hotel, I had amazing support from those who I told what was happening and I didn't hurt myself at all, but i did only get 2 hours sleep that night, from anxiety. Woke up the next morning (2 hours later) and felt slightly better, got someone to do the "sick check" to ensure I would not come into contact with any. Safe. Panic attacks ensuing still I get in the lift (although not the one the sick was in, thats too hard even though it's now clean). Get out of the hotel and go to training, phew thank goodness that's over hey! NOPE! Amongst other occurrences through out the day of my body throwing a wobbly (dislocations, fainting ect), someone was sick, I didn't see it, but I don't have to see it, heck they don't even need to be sick for me to freak out. I shut down. It's not the first time, in fact it's happened a lot, I can't speak, can't look at people, can't reply to people, can't move, sometimes I can't even open my eyes in case something bad happens. Then the voices pipe up again. "If you'd self harmed and set yourself on fire yesterday this wouldn't have happened. This is your fault. And its going to keep getting worse until you do it." Communication had to be done through questions and blinking, it was all I could manage.

I hope this goes some way to explaining what it's like to have a phobia. Please, if your unwell don't let me come to yours without pre warning me. If you are sick or feeling sick around me, please know I do not blame you for my illness and difficulty, it's not something you have control of or have chosen to do. Please know that I do care, and I want you to be ok, but staying to make sure you are puts me at extreme risk from my mind and its reactions (I will do everything I can to get someone else to help you though). Please don't tell me that everyone hates sick, because this is a whole different level.

Feel free to ask me any questions. I hope I've explained this well enough for people to understand. Thank you to those that have supported me through the many many times that it's all gone wrong, I really appreciate it.

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Friday, 24 March 2017

Medication.

I want to talk about medication and mental health, it's playing on my mind a lot recently.
I want to start by saying there is nothing wrong with taking medication for your mental health problems or illnesses, there is also nothing wrong with choosing not to! Medication has played a huge part in my recovery thus far, and I'm not ashamed of that.
I think a lot of us realise that mental health conditions have a very physical element, brain chemicals are involved among a number of other factors, and medication can bring these levels back up or down or wherever it's most helpful that they are!
From my experience though, as a person with BPD (borderline personality disorder), there is something I do not understand. If you've ever seen a psychiatrist about BPD im sure you will have had a similar experience as the one I'm about to share. So you have BPD, your not managing as you are, so we start to talk about medication with my psychiatrist. This is when your told something along the lines of 'There is no medication that can cure BPD, we can only treat the symptoms, so im unsure if we should use medication', at first this may sound disappointing to some, but for me I already knew that BPD can't be fixed by medication, and that's ok with me, but it can help with the symptoms.
Now just stop and think for a minute about diabetes that requires insulin. Imagine you have diabetes and you go to your doctor and they say 'there is no medication that can cure diabetes, we can only treat the symptoms, so im unsure if we should use medication'. You'd want those symptoms treated right? It could threaten your life not to have those symptoms treated. It's not going to cure you, and that's ok but its not expected for you to just live with the symptoms and problems it causes.
So why do we expect people with mental health conditions to not use medication simply because it won't cure them? Why are we told that because they can only treat the symptoms and not cure it that they shouldn't bother?
For people with diabetes medication can be part of the wider picture of what treatment looks like for them, managing they're symptoms, and no body shames them for needing it. Yet when it comes to mental health conditions we are shamed if we want to try medication or if we take medication to help with our symptoms as part of a range of treatments.