Saturday, 28 April 2018

Ch-ch-ch-ch-changes!

Hello!
Long time no post! Life got chaotic! Anyway, one of the things I decided I wanted to do this year was to eat less and less animal products, working my way towards the vegan lifestyle.
This is for many reasons; I've been educated about what happens to a lot of animals and it evoked really strong emotions in me, especially watching earthlings, and I'd like to know that I'm not making animals go through that for my dinner, I'm not sure anyone can know the truth and not be broken by it; another reason is the environment, I never knew how much the demand for animal products is both wrecking our planet and environment but also preventing millions of people from being able to eat rather than starving to death - did you know that if we stopped feeding the soya beans we grew to animals then we could end world hunger, we would have enough food to feed every human on the planet; another factor is of course my health, as most of you know I have Ehlers Danlos Syndrome, and associated conditions, and a vegan lifestyle is never going to change that or make it better, its a genetic condition that I've had all my life and will have all the rest of my life, but there are definitely other things that could improve by changes to my lifestyle!
My plan was to slowly transition, replacing things with vegan ones when they run out, and as part of that I ended up going through all my foods to check they're dates and pretty much all the foods that weren't vegan were very much out of date! In terms of food I'm now going fully vegan, I cant bear to put animal products in my mouth anymore after watching earthlings! Other things like toiletries, clothes, shoes, cosmetics, kitchen items ect will slowly be replaced when they run out with vegan or waste reducing alternatives. I wont lie this will be a challenge, I know that, and there may be slip ups and stumbles along the way, its not about perfection, and judging myself wont help me or any part of this, so its a judgement free zone!
Some things I've been loving so far:

  • Starbucks almond milk mocha
  • lentil dahl
  • Vego chocolate
  • Wiked vegan meals from tesco
  • vegan chai latte
I'm planning on reviewing some products, sharing some recipes/food muddles that taste good, and generally sharing along the way!! There will still be other posts, but this blog is about me talking about things important to me, and this topic is very important to me, its been eye opening and a shift in my perspectives!
Lizzi x


Thursday, 1 March 2018

Self Harm Awareness Day

Hello!!
Today is self harm awareness day! So lets talk self harm! Self harm is a difficulty that effects many many people. It is primarily heard about among teenagers, especially teenage girls. However anyone of any age, gender, race, sexuality etc. can have a battle with self harm. The misconception that only teenage girls self harm is a dangerous one, as it prevents people getting the help they really need, for fear of being judged or on the receiving end of stigma, it has happened to me, and to many others I know.

There are many different was in which people self harm, including cutting, burning, head banging, punching things, attempting to break bones, taking overdoses, inserting objects and much more. No form of self harm is more 'serious' than any others, please do get your self harm treated if it needs it, always be on the safe side. Some self harm is visible, some is hidden, and some people show it intentionally and others hide it intentionally, it really depends on the individual.


All self harm is valid, distressing, difficult and damaging, and the 'severity' of the wound (in medical terms) doesn't always equate to the amount of distress. A sufferer could be completely consumed by their mind and illness, mentally in an awful place, but not have self harm that would need treatment; equally someone could have a deep or long wound that requires treatment but is less distressed than when they did a shallower cut. It's also really unhelpful to compare, whether your comparing your own to someone elses, someone is comparing theirs to yours, or any other comparison, it doesn't help, in fact there is no time when that would be helpful! Self harm is individual, don't tell someone yours is worse, don't tell someone theirs is worse, just don't!
Supporting someone who self harms!
Learn about self harm, Mind has some good guides!
Ask them how they want to spend time, distraction can sometimes help more than constantly talking about it
Talk to them! In general! But also about self harm, but bring it up in private, not in front of others
If they show their scars, accept them. If they cover their scars, accept them too!
Don't make comparisons, they help no one!
Offer to help them get help!
Ask what helps them or what could help them and give it a go together!



Lastly, Self harm isn't a suicide attempt, most of the time its a coping mechanism. However self harm can become addictive, and can lead to limb loss, loss of sensation, sepsis and death. Seek help now, ask someone to support you. You can beat this!! Your not alone!
Thank you for reading!
Check out my doodle instagram for me doodles!
L xxx

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