Showing posts sorted by date for query health. Sort by relevance Show all posts
Showing posts sorted by date for query health. Sort by relevance Show all posts

A Roaccutane Update



I began my Roaccutane journey in March and have since only made one update post as the whole situation ended up a bit more complicated than I would have anticipated. The appointments are only available to go to between 9am and 5pm so my partner has to take a half day off work in order for me to attend, but he had sorted it out with work. I was told that Roaccutane will stay in the system for a while, so after I'd had one appointment at the end of April cancelled and move to the middle of May, my acne all of a sudden started to come back despite me being told it wouldn't.

I found it hard to write updates as every appointment has been difficult in the sense of finding parking and paying for it, as up until recently I've not had a disabled blue badge. We've had to only use the hospital pharmacy which shuts at 5 and I've been given 4pm appointments sometimes so we've had to go back the following day to pick the medicine up. I've been seeing a few different Dermatologists and Nurse Specialists so I've not had consistent appointments; some have wanted to know a lot about what has been going on with my skin and mental health, and others have wanted me to be in and out and it's very confusing. I was hoping to start this journey and document it to help others but I genuinely wouldn't want someone to take everything I've said with the idea that that's how their own appointments would go, because it will differ from hospital to hospital. If I had the money I would have gone to a private Dermatologist but that isn't the case when as a couple we're living off one income that soon won't be enough to sustain us efficiently. 

Unfortunately, I was supposed to attend my appointment yesterday but the battery in Andy's car went and we had to call recovery so I missed it. Now there's a two-week wait and I had been taking half dose of Roaccutane already as I keep getting scheduled appointments that are longer than 28 days apart. With a few months until the wedding day I am concerned, given that my spots have already started to come back with a half dose, never mind going cold turkey for a fortnight and then going back on the medicine. I wish I could increase my dosage too as the slight change in dosage and my spots just come back. I'm worried that I'll still end up having acne on my wedding day. There isn't much I can do aside from trying to request a specific Dermatologist appointment and hope Andy's work allows him to take me because I don't have anyone else to help and the hospital is too far away. I'm crossing my fingers that it all works out okay.




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I'm Starting Roaccutane For My Acne




I'm finally starting Roaccutane! I've had spots since I was 11 and they remained mostly on my forehead through my teenage years. By the time I went to University they were anywhere on my face and since I graduated I had acne on my face, particularly on my jawline, cheeks and neck, but also on my chest, thighs and back. It feels like it's everywhere and sometimes it's really quite sore. It particularly gets in the way when I get my partner to massage my back due to Fibromyalgia pain and these cystic spots hurt when you touch them. I have tried multiple different medications and creams/gels but nothing has worked so far. February 10th is the date I get my pills and I really hope it works. They have allowed me to do same-day urine sample tests instead of day-before blood tests due to me needing someone to bring me to the hospital and back. I've been watching content online and doing some reading so I'm going to write down things I can expect and things I'm going to do to prepare my skin.

Dry skin
I know it's going to dry my skin out, including my scalp which will affect my hair too. My GP has prescribed my Aquaderm to keep my skin moisturised and I've bought a big tub of Vaseline for my lips. My hair is naturally curly and dry so I only wash my hair once a week anyway. I don't wash it because it's greasy I wash it because I have product in my hair that needs rinsing out so I can start my curl routine again. I don't think this will change anything, aside from me looking at a shampoo with oil in to help my scalp.

Sun exposure
Your skin is more sensitive on Roaccutane so you must wear an SPF of at least 15. I plan on buying the La Roche Posay SPF 50 for when I'm outside and wearing an SPF 30 inside. At least I start my treatment in February so I have some time until the sun is high in the sky and really warm. I don't tend to go out in the sun a lot anyway as it's not good for my POTS.

Knowing things will get worse first
I have watched Katie Snooks' videos and she said multiple times to prepare for your skin to get worse before it gets better. I know that I need to be kind to myself and to my skin and a bit of patience and moisturiser is what I need. She also said not to pick your skin when on Roaccutane as it can make it worse so I'm going to try my hardest not to as hopefully I will only have to be on one course of it so I need to make every day count.

Mental Health
Another side effect of Roaccutane changes to your mental health. You can get "anxiety, aggression and violence, changes in mood or suicidal thoughts". I have already been diagnosed with depression and anxiety since I was 16 due to problems at my previous home and I have been managing well for the last few years. I still have bouts of both depression and anxiety, as you would because they don't ever fully go away. I am expecting for some changes in my mental health and I am being fully honest and open with my partner and my lovely future Father-in-law and Stepmum-in-law. I will promise to update my best friend and my favourite online friend Kirstie as both of them know my history well too. 

Sunglasses are a must
With the effects of the medicine kicking in, my eyes will most likely be dry and sensitive to the sunlight. Well, with Fibromyalgia they are already sensitive to both sunlight and artificial lights, so I am fully expecting this to get worse. Along with my glasses, I'll bring sunglasses everywhere with me to try to prevent migraines.

i think the next thing I need to do is buy other skincare including SPF so I am fully prepared. If anyone has any advice I'd love to hear about it on my Twitter on Instagram. The more I read people's experiences the more I understand what I should and shouldn't do.


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Things I've Learned In My 20's


I learned to love my curly hair
It was always brushed out as a kid and it was only when I was 12 and started doing my hair myself that I realised how curly my hair actually was. Prior to this I hated my hair and complained about how frizzy it was. When I saw for my own eyes how curly my hair was I was upset at how the curls were brushed out and plaited away like they didn't exist. I had my hair curly for a year or so before as a teen I felt the pressure to straighten or curl my hair with tongs. I then fried it for years including bleaching it and it kinda ruined it. Now that I'm in my late twenties I'm really trying to fix my hair and appreciate it. I'm trying to buy the best products for it and buy from black-owned businesses as they make the best products hands down. 

It's good to self-reflect 
As a teen, I was often on the defensive and I had a lot of hurt and anger inside of me. I said to myself whilst I was in University that I had to be true to myself, be an honest person and be kind. Now that does not mean I am perfect in any way. I try to reflect back on conversations and see what I'd change 
about them if they happened in the future. I make sure I apologise to people and explain why I think I've hurt them. I have done a lot of reading and I make sure that I protect myself by sticking with my boundaries but I'm also living the most honest life that is true to myself. I think it's a great thing to be able to critique yourself and try to be a better person.

I'm not responsible for other people's feelings
I am an empath and I often try to help people out. With that comes other people's emotions and I often carry them when I shouldn't. I have worried a lot about how other people feel when I should put myself first. I can live my life the way I want to and I am not responsible for how other people feel about it and I shouldn't carry the weight of their emotions.

Setting boundaries is key
It's important that everyone has boundaries in different kinds of settings; work, school, relationships, family, friends etc. Boundaries are invisible barriers that we put up to protect ourselves and you can decide how strong a boundary is depending on the situation and whether people respect you and your boundaries or not. These boundaries help protect your mental health and can reduce the stress in your life. They can be rigid or flexible depending on the situation. I think it's one of the most important things you can do in life. One example for me is I've set a boundary in place with friends and family that I won't say yes to going out somewhere or doing something if I don't think my body (with chronic illnesses) can handle it, and they mustn't try to convince me things will be fine because I know my body best. One thing I've learned is that you should be consistent with your boundaries as it reinforces the original statement so it's clear what it is. Learning how to say no is great too. I have enjoyed reading this article about how to set up boundaries and this one about preserving boundaries.

You don't have to drink alcohol 
I thought when I was a teen that alcohol would be a really big thing in my life, but once I'd stopped partying during University I realised that I don't actually like it that much. I stopped going on nights out and only had the odd glass of wine or a cider in the pub or at Christmas. As time has gone on I've completely cut alcohol out of my life. It really urked me when people have joked about using drinks like wine as a coping mechanism or people making fun of those who don't drink as if they are 'boring'. I think a lot of Millenials like myself have come to similar conclusions. I don't have alcohol as part of my personality, I don't need it and in fact, it really messes up my medications too. You don't need alcohol to have fun. Don't give into peer pressure, and if your friends will only see you if you drink, you need to find some new friends. 

Actions speak louder than words, but words can tell you who a person really is 
I have learned over time that having people promise to do things doesn't always mean they will do it. I prefer people doing things then I can see it for myself. I prefer someone being a better person than promising to be a better person. But aside from actions, words can really show you who a person actually is. How someone treats a waiter or service staff is a prime example of what they're really like. If I had ever gone on a first date with someone I would go for a meal just for this reason. If they treat someone in retail really bad it shows you what they're like. If they volunteer to help someone in need it shows you what they're like. You can learn a lot about someone just from observing them. 

Listen to your body
You know if your body isn't feeling right, and advocating for yourself is really important. For me, getting diagnosed with multiple chronic illnesses took me speaking to myself and telling myself that I know my own body and if I don't fight for answers then I'll never get them. For some people, it's taken decades to get a diagnosis of Ehlers-Danlos Syndrome and I had to fight to get answers for myself. I've seen five medical professionals before I got my diagnosis. If you know that something with your body isn't right, I urge you to listen to it and try to get seen again if things still aren't right. 

Respect is earned, not given 
I really have never liked the saying 'respect your elders' as if anyone older than you can do no wrong and that you must never speak out against them. It's such a toxic thing, even if the original statement was never meant to be conceived that way. Respect for everyone must be earned, and if it isn't then you don't have to speak to them or even keep them in your life. If people do apologise for things they've done wrong, you can choose whether to accept it or not, but don't think that just because someone may apologise that you have to reconcile with them. This comes with respecting yourself and this is where setting boundaries comes into play. When someone shows you their true colours, believe them.

You can stop supporting people who upset you
You may think that this is just on a personal level, but it applies to anyone. A prime example of this is Sia, the singer. She made a movie about an autistic child and instead of hiring an autistic actor, she chose a creative person she is close to who she has chosen to do pretty much every project she's made since she met her. Included in the movie was a ton of autistic tropes, dangerous ways to manage meltdowns and much more. Instead of apologising, she set her fans onto autistic people on Twitter. She made a lot of comments about a mystery autistic actor she 'originally hired' was 'too hard to work with' and for help with her movie, she used an organisation that regularly really hurts autistic people. She doubled down, no, she tripled down. She refused to back down and upset a lot of people. Now I originally supported her as I liked her music, and when I found out that she had Ehlers-Danlos Syndrome I thought it was great that she was speaking about it to the public. Now I refused to listen to her music as it gives her royalties and don't recommend her to anyone. Also, the movie flopped.

I've learned a lot about the meat and dairy industry
Two years ago I went vegetarian, for a multitude of reasons. Now, I would like to go vegan, but medically it isn't possible for me right now. I have been told what I need to consume to keep my body as healthy as it can be and with a lot of intolerances there are some things I simply cannot swap out. When I can limit my animal by-products such as honey, milk, cheese etc I do so. Anyway, I have learned a lot about the meat and dairy industries that I find absolutely appalling. I went to watch Supersize Me 2 as when the first one came out I thought it was interesting, but I was not expecting to find out what I saw about baby chicks. I have learned about what farmers do with little calves and it hurts me to my core. When I was younger I was forced to eat things like turkey and lamb, and I'd try and get rid of it in any possible way as I hated it. I think I've always wanted to go vegetarian, I just had to wait until the time was right. I would urge anyone to consider reducing their meat and dairy intake even by just a little to help save animals and reduce the effect of climate change on our planet.

I've discovered who I am
A while ago I did one of those Myers-Briggs personality tests to see what it said about me as a person. Surprise surprise I am what they called a Mediator. It said I was empathetic, open-minded, creative and passionate, but I'm also emotionally vulnerable, desperate to please and self-critical. Once seeing this for myself, I'm learning to balance these strengths and weaknesses out. I'm not trying to please people and I'm living my life for me, and I'm trying not to think just from the heart either. I've also had a bit of self-discovery when it comes to religion. I was christened and I wish I wasn't because although people say 'you can choose when you're older' I don't believe that originally christening them is giving them 100% of that choice. Anyway, I'm not a Christian or anything from that denomination and this has come from getting chronically ill. I really don't like the idea that prayer will make me get better. Why would a God give me an incurable set of illnesses? What did I do to deserve that? I just am done with religion. I've realised I am a Humanist which means I go with what science says and I go with ethics and empathy. I base my life choices on what I believe is good for me, what medically I should do and how my actions affect others.

Self-care is a must
To reduce stress, love yourself and stay balanced, practising self-care is a must. This could be taking time out of your day to sit and listen to music, eat nutritious food or alternatively indulge in a treat. It could be to take a walk with a friend or to go to bed early. Importantly, this includes setting boundaries as I mentioned earlier. This also includes reducing the amount of negativity in your life. Unfollow negative people from social media, don't hang out with people who bring you down, turn down social events if people there hurt you. The more positivity you put into your life, hopefully, the more positive and happy you'll be.

A healthy relationship with your partner is key
I had a toxic relationship as a teen, with both parties going through the stress of family life, school and more. We were both toxic to each other. As an adult, I have learned from those mistakes and communicate openly with my partner. We take time to listen to each other, we help each other out and we make compromises. You need to find a partner with who you can have a healthy relationship with in order for it to blossom and last long.
 
Consider who you share things with
I can be way too trusting and it has come back to bite me before. I wouldn't trust every person you have close to you that they will keep a secret or personal information to themselves. I try not to tell too many people what is going on in my personal life, whether that's medical problems, interactions with family or friends, any disagreements etc. I keep things closer to my chest now and I'm less trusting. Things can be misconstrued and I've had people discussing my disability behind my back and it finding its way to me and I just don't need that negativity in my life.

Express yourself the way you truly want to
For years I have been dressing really boring so that I'm not too 'expressive' as it tends to get comments from people. I've had comments about dying my hair in different colours, but in reality, I was just having fun and expressing the creative part of my personality. My partner encouraged me to get my nostril and septum pierced because I'd wanted to for ages but I was concerned that people would make comments. What was surprising to me was that my Nan really liked them and said I suited them. I've been into tattoos and piercing ever since my Emo days from 2006 onwards. I'm now dressing how I want to and living my life that is true to who I am inside.

Live on your own timeline
Just because there is a societal expectation to be married before 30 and start having kids doesn't mean you need to live by that timeline. You don't need to have found your dream job by 30, you don't need to have gotten married or thought about kids yet. Live by your own rules and take your time. Don't rush into things because other people say you should. I'm not working and I'm unsure about having kids and I've made my peace with that. Me and Andy only decided to get engaged because we were ready to, not because others expected us to.

You don't have to agree with people's beliefs
Often I find that there are two main camps when it comes to beliefs. You have politics where there is the main party on the left and the main on the right. There is eating meat and not eating meat. There is being religious and not being religious. Often these topics have more than 2 opinions but there are often 2 main sides. I've learned that you don't have to agree with people's beliefs and you shouldn't try to convert people either. I am a strong left-leaner on politics who is vegetarian and non-religious. I don't try to convince people to leave what they believe in and believe in what I do. I expect the same from others too, but my main point is that you don't have to agree whether what they believe in is right or wrong. If a belief is too toxic to be around, say like someone believes in Eugenics, then it is perfectly reasonable for you to not be around the people who believe in it. You should be able to have conversations with people without these topics coming up...

Don't let people's mistakes dictate your own life
I have been told before not to do things because someone older than me did that thing and they regretted it and it was a mistake. It can be perfectly reasonable things like going for a type of job, getting engaged, buying a car etc. Don't let other people's life choices dictate your own life. Just because you regretted getting married does not mean I will either. Every big decision you make is a chapter in your life story and everything you do you can learn from whether it's positive or negative.

Life is better when you don't care about what others think
This is possibly the hardest thing I have had to learn but boy is it the most gratifying thing once you've understood it. Life is so less stressful when you stop considering what people think of your choices whether it's outfits, holidays, where you live or what car you drive. I think this also comes with confidence too and I've had to learn that too. Obviously, there are some exceptions, like for say in a wedding. You should wear an outfit that matches the dress code and not wear white or whatever colour the bride may have forbidden. Honestly, don't ever wear white to a wedding, that is a huge exception to this rule. Aside from exceptions, make choices how you want to and stop considering how other people may perceive them. Live your authentic life.

Follow your gut instinct
I truly believe that your gut can keep you safe. Like if you meet someone and get a weird vibe from them and go away from the situation then later learn that they are dangerous. Or you take a different road home and get a weird feeling in your stomach and turn round then later find out it was flooded. I think red flags can give us strange feelings and I don't know how to explain it but I now trust in my gut. I don't try to explain away something or ignore things that don't sit right with me. 



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Myths and Assumptions That Non-Disabled People Make About Disabilities

A man called Andy who is wearing a sky blue parka and dark jeans is pushing his partner Laura (me) in a wheelchair. Laura is covered by Andy as the perspective is from behind him.We are in Sefton Park in Liverpool in the midst of autumn. There are autumn leaves on the paths and green space. It is a lovely day.



A disability in the UK is defined by the Equality Act 2010 as a physical or mental impairment that has a substantial and long-lasting effect on a person's regular carrying out of day-to-day activities. This means disabilities can include visible disabilities but also invisible ones such as Autism, chronic illnesses like Fibromyalgia, mental health conditions, and vision impairments. Some disabled people will have multiple disabilities both visible and invisible. There is a lot of stigma that comes with having a disability, such as stereotypes applied to us, people feeling like they cannot communicate with us, being left out and so much more. We are often discriminated against, whether that being in the form of ableist language and insults, businesses not providing access, not being believed in medical settings, and being left out of things like marketing campaigns. Misconceptions and myths need debunking, so I thought I'd write this post with a lot of them. If there is more to talk about I'll write a future post too.


Not that many people are disabled anyway so why listen to articles like this one
One in five people in the UK have a disability or chronic illness. One in five. 20%. Scope breaks this down into a few categories, including 8% of children are disabled, 19% of working adults are disabled and 46% of pension age adults have a disability.


Person-first language is more polite and every disabled person prefers it
From the disabled people I've had the pleasure to meet online, and my own personal preference, the consensus is that identity-first language is better. I am not a person with a disability, I am a disabled person. From what I've seen online, identity-first language is more common in the UK, with person-first language used more in the US. However, if you go on Twitter and speak to disabled people, a huge chunk of them will tell you they prefer identity-first language. I think sometimes it depends on the disability or chronic illness too. The preference depends on the setting, as workplaces and businesses may often use person-first language as they see it as more polite. Another example of language choice is not referring to people as 'suffering from X' or 'bound to X'.


It doesn't cost disabled people more to live
It actually does, by a lot. Scope in 2019 found that it costs on average an extra £583 a month to have a disability. This includes things like paying for mobility aids, parking for hospital appointments, paying for physiotherapy, items in the house that make it more accessible for you. 20% of disabled people face costs of over £1000 a month. Considering a lot of disabled people have no welfare money coming in such as Universal Credit or Personal Independence Payments, this is a lot of money to conjure up. In my case, I have no welfare money and rely on my partner working in his full-time job. He gets no money for being my carer when he isn't at work. We have to miss out on so many things that others take for granted, such as going on holiday, eating out at restaurants, buying a new car (that would fit my wheelchair and aids in a lot better!), buying a bigger house, buying designer clothes and so much more. Even a good sofa is a no-go for us. We have an IKEA sofa which has already had to be replaced on warranty, we cannot afford to get a fancy sofa even from places like DFS. The pressure of trying to pay for bills and mobility aids is another reason why disabled people struggle to get into the workforce too.


It's okay to offer us solutions/cures
I don't think under any circumstances it's okay for someone to try to 'fix' a disabled person. I think there can be things that can genuinely help symptoms for people, but on the whole, it's better to ask a person first. This could be as simple as 'is it okay for me to offer a suggestion that has helped me before?'. From experience, a lot of these cures/solutions/suggestions seem to be offered in a more passive-aggressive tone without genuine concern for the disabled person. Things that have been suggested to me before comprise of: trying yoga, trying pilates, walking, swimming, trying detox teas, getting a professional massage often (like I'm made of money), eating kale, sleeping better (like I haven't tried), essential oils, meditating and mindfulness, trying not to think about pain, drinking smoothies, resting and more. And people wonder why the cost of living is higher for disabled people if they're paying for a lot of these things and mobility aids and prescriptions. Needing to 'fix' us implies that you think we're broken. Everyday Feminism explains it perfectly; 'cure-focused narratives have deep roots in systemic ableism'. Treatments for us is a different matter, which can be things like physiotherapy, hydrotherapy, medications, surgeries and mobility aids. Emily Ladau puts it perfectly 'Those who are fighting hard to eliminate genetic disability should be fighting harder to change the world".


It's okay to park in a disabled bay if you don't have a blue badge, even if for a few minutes
I can give a very quick answer to this and that is a huge no. Proportionately there are way more other parking spaces than there are disabled bays, so just use one of those. I don't even have a blue badge yet and this upsets me. It is rude and shows you don't care about disabled people.


Non-disabled people can't do anything to help disabled people
Non-disabled can help us remove barriers that we face in a mostly-abled world. This can be through advocating for us for things like accessible tickets for concerts, pointing out ableism in public, supporting us to make changes online through things like petitions. By not using our aids like parking spaces and disabled toilets if you aren't disabled/chronically ill. Speaking out against ableist language from people, even if they're justifying it as a 'joke'. Even just opening a door and holding it for us. There are so many things you can do to help us that make take the smallest amount of time but could change a lot for us.


Wheelchairs are for paralysed people only
In the UK, out of the 1.2 million wheelchair users, approximately 33% of them are ambulatory wheelchair users and 8% of disabled people use a wheelchair at all. Wheelchairs offer independence to those who struggle to walk, struggle to stand up, are in pain when not using them or just do not have the energy to not be in a wheelchair. A lot of people get comments like 'someone else could be using that wheelchair and you're taking it away from them' which is ridiculous as some people like me own their own wheelchair (mine was donated to me). I think from my point of view, the funniest thing from me using my wheelchair was when I wiggled my legs and a lady looked at me in horror, like she assumed I was paralysed. Another comment is about being too young to be in a wheelchair. How do those people explain disabled children needing wheelchairs or elderly people who are fit and well who doesn't need them? There isn't an age limit on disabilities. I have Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome which means my joints can dislocate and I can faint from standing. In what world do people think it's safe for me to be walking around a shop or a park if I don't feel able to? It puts me at risk of injury.


We all have really strong painkillers like opiates to manage pain
You may actually be surprised to hear that even the strongest painkillers sometimes do not take all of the pain away. Some people are not on any painkillers as everything they've tried doesn't work. Even if people are on strong painkillers, so what? A lot of chronic illness and disabled people struggle even getting some form of pain management as they're wrongly mislabelled as 'drug seekers'. Medication is a personal and complex topic and probably shouldn't be asked about unless you are that person's GP.


Disabled people can't/shouldn't have children
This is a classic example of Eugenics. This is defined as 'practices that aim to improve the genetic quality of the human population' and was used by the Nazis in the 1930's and 1940's for example. In that time, there was forced sterilisation of disabled people in order to make 'the best humans in the future'. It has been used to try to justify human rights abuses and despite it being widely known as a horrific thing, so many people still think disabled people should not be allowed to have children. I think people forget that you can become disabled at any point in your life, whether that be from developing a post-viral illness or being in an accident. The most important thing I can think of is 'why are other people concerned about whether we have children?'. Why does it matter to them? Whether disabled people can't have children is their personal circumstances and their medical information should not be shared with us unless the person wants to. Nobody should be concerned about whether disabled people reproduce unless you are that person.


It's obvious when someone has a disability
So many people have what we call invisible disabilities which are conditions that aren't apparent to the naked eye. Say for example you see a broken leg, you know that person has a temporary physical disability. If someone has joint pain, you often cannot see it, therefore it's 'invisible'. This is also apparent for mental health conditions and for Neurodiversity too.


Wheelchairs are the only mobility aid needed
Nope. Here are some examples of mobility/accessibility aids: wheelchair, crutches, walking stick, orthotics, walker/rollator, modified eating utensils, modified writing utensils, grabbers, grab rails, doorknob adaptors, modified sleeping surfaces, tetrapods/tripods, hearing aids, visual aids, braille menus, assistive computer technology, compression stockings, artificial limbs, feeding tubes, catheters, adaptive kitchen technology like kettles and tin openers, shower stools, hoists, toilet frames, bed levers, assistance dogs, electric mobility scooters, lifts, char lifts, eye-tracking systems, plastic straws, reminder systems, bed/chair tables, clothing aids, canes, keyboards, splints, braces and supports, ramps, fidget toys, automatic doors, and so much more.

We all have a blue badge 
The Blue Badge enables disabled passengers and drivers to park as close to their destination as physically possible. It costs up to £10 in England, £20 in Scotland and is free in Wales. They usually last around 3 years and you have to reapply for it before it expires. On the application I would check 'I have a permanent disability or condition that isn't expected to improve for at least 3 years'. This is where some of the problems lie, as some medical professionals have the viewpoint that if you exercise and lose weight you can manage conditions well which is not the case at all. If the medical professional doesn't really know about your conditions at all, it can be difficult to prove otherwise. When applying you can use supporting evidence, which is often a letter from a professional and PIP award. For me, I will have to contact my GP to ask for a letter and plead for them to say I won't 'get better' or improve, and I also I don't have PIP right now. When it comes down to having a Blue Badge, you have access problems gaining it, a financial cost, and the need to prove your disability. It isn't always easy.


We all claim Personal Independence Payments (PIP)
Like above, a lot of us don't claim PIP. Sometimes because the access isn't there in the first place to aid in filling out the forms and going to the assessment. Sometimes this is because the mental stress of filling them out and being assessed is way too much. Other times it may be because we don't have enough evidence despite living daily with our disabilities. Since the Government switched from DLA to PIP it has become so hard for disabled people to claim welfare payments. Often people have to go to tribunal to appeal the decision before they're awarded. Think about how much time, effort, mental energy, and sometimes money would go into that. I still haven't applied as I've been waiting for more diagnoses to provide as evidence. It's really tough, and you can be awarded as little as £20-something per week to live on, which is almost nothing.


It's okay to pray for us
Without permission from the disabled person, I don't think it's ever okay to pray for us. For me, it's a hard no. I don't belong to a religion and identify as a Humanist which means that I think about ethical decision-making and science. Before this, I didn't ever personally identify as belonging to a religion when I have been able to think for myself. Aside from this, are you praying that your God will fix us? Because the whole religion and disability topic is complex in itself. The Mighty have spoken about this before, as even strangers sometimes approach disabled people to pray for them. Are they trying to pray it away? People may refuse and the religious person will still try and pray for them. Or, they may refuse, they go back home and they pray for them there. Consent in every context should be taken seriously. The only people who have ever offered to pray for me have been Christians/Catholics so I can only really offer that side of the story but it feels 'off' to me. You don't see us as people, you see us as broken beings who need a miracle to make us into a proper person.


You can be too young to have disabilities
You can be born with disabilities, or become disabled as a child, teenager, or young adult, just like you could as an adult or elderly person. This myth is really harmful, as it encourages people not to believe what disabled people are saying if they're of a certain age or they look younger. The thing that gets me most is when older people believe this myth. There are mostly two categories of people who stare at me when I'm in my wheelchair; kids who are just curious, confused, or otherwise, and elderly people. The people who have glared at me most are the latter and I think it's because there is this false assumption that if you're not over a certain age you should be up and exercising, not wheeling around or using mobility aids. In the education system and in the media there should be way more education around disabilities to prevent these assumptions from happening. I've been teaching my 9-year-old sister about disabilities and ableism and from what she's said, she is more respectful and eager to help disabled people now that she is free from certain assumptions.


Disabled people can't be independent
This comes across to me as an uneducated and rude assumption, to be honest. Why can't they be independent? Why does it matter to you if we aren't independent? There are plenty of independent disabled people and plenty who need care. I'm not sure why this matters. Sometimes when out people will talk to the person who is with the disabled person, as if we can't talk for ourselves. This is awful and patronising. We are our own our person and should be treated the same as everyone else.


Disabled people should all be trying out for the Paralympics
I don't understand where this comes from. A lot of people have one of two mentalities; the first that we are all 'mega' disabled and have carers and loads of welfare money and we cannot do anything for ourselves, or, that we could be amazing Paralympic athletes and we just need to put our minds to it. What? So many people with disabilities live in unbearable pain, or they require access aids to help them do daily tasks. Let's maybe not encourage people to be athletes unless they express interest in it.


We all have carers or family that look after us
Absolutely not. Some people have neither, some people have one or both. I am lucky that my partner is my carer, but that is only because he cares for me outside of work. During his working hours, I am left alone and it is often difficult for me. Should my condition get worse we will have to look for a carer but we cannot afford one. Care in the UK is underfunded, unsupportive, and frankly not good enough. The Government does not care about disabilities (source: see their voting history). I think with the family route, some people are single and they are estranged from their families, or their close members have passed away. I would be super wary of asking people what their care situation was like unless you were able to offer a viable solution for them.


We refuse to get a job and use disabilities as an excuse
4.4 million disabled people are in work, which out of 14.1 million disabled people is a good chunk of people, especially considering you have children, retirement-age people and people with severe disabilities that prevent them from working are in this number. Many people do work with their disabilities as the statistics above show, but there are many barriers that disabled people face. Scope outlined that if 1 million more disabled people were in the workplace and supported there too, the economy would fact a boost of £45 million. A lot of disabled people want a job, but can't access jobs, or a discriminated against in job interviews. Fun fact, you don't have to disclose your disability to anyone. But facing support is a difficulty. Ways in which the workplace can support disabled people may be allowing remote work, providing lifts and disabled toilets, providing disabled parking bays, modifying hours, software licenses, and much more. Many employers think providing access is too hard, or they're worried they'll get it wrong. According to Huffington Post, the reasonable adjustment could cost just £30. The UK Government's Access to Work can even help employers cover these costs. For some, it's not the job itself but the transport. For me, with reasonable adjustments, I could work an office job providing I had plenty of smaller breaks and other things, but I cannot get to a job. I don't have a car and will not be able to drive now (see my POTS post here) so I would have to rely on public transport. Taxis can be an issue with bringing mobility aids, buses only have one disabled bay and often prove difficult when standing for a bus. Trains are tricky as often if you're using a wheelchair you have to book access help over 24 hours in advance which is ludicrous and sometimes the people don't even turn up to help you onto the train. Often on trains, those disabled bays are filled with bicycles and suitcases too. I can't cycle due to the pain it puts me in, I learned the hard way when I went to Center Parcs. Obviously, if I'm not allowed a driving license I can't use a motorcycle, not that I could afford it anyway. Walking a long distance (we're talking over 5 minutes) is a no-go. So where do we stand? For me, freelance work and working on this blog is the only option I have left.


Businesses don't need to provide access to disabled people
1 in 5 people have a disability, that's 20% of your potential customer base alienated if you refuse to provide access. According to The Ramp People, if access was provided it could bring in £249 billion a year. The Equality Act 2010 should be reformed to make more businesses provide accessibility but right now it's down to the business themselves. Access can be in these forms: Alternative menus including large font, different coloured paper, and braille, ramps up to doors, automatic button doors, disabled toilets, changing spaces toilets, no flashing lights or strobe lighting, a quiet room for sensory purposes, moveable chairs to allow wheelchairs to take their space, access listed on your website/Google Maps, lifts, wider stairs, handrails, multiple disabled parking bays, employees trained in basic British Sign Language, space wide enough for wheelchairs to manoeuvre, no chairs/tables/signs blocking the pavement outside, dropped curbs, adequate signs, low background music, and accessible checkout desks and reception areas. According to Purple, businesses miss out on £2bn every month if disabled people cannot access their services or shop. 


Whatever the medical professional has said is always right and we can't know more about our conditions
If you've not seen the meme 'Don't confuse your Google search with my 6-year degree and medical school' then you may not have seen the response from the disability/chronic illness community. The response is 'Don't confuse the one-hour lecture you had on my condition with my X years of living with it'. It's true though. I have had to explain my hEDS condition to almost every medical professional I've had. The only person who knew about it was my Cardiologist. Even with POTS, I just said 'dysautonomia' to my Neurologist because so many people have no idea about these conditions. Obviously, there are exceptions here; there are specialists in those conditions, some professionals have the conditions themselves or some are keen on learning more about conditions and will know a lot about them. Sometimes you will have medical professionals who don't know about your condition but will read up on it and learn more before your next appointment. But the whole 'don't Google anything' mentality is damaging and dangerous. How many people will have symptoms, search about them and realise it's more urgent than they thought and seek medical treatment that can save their lives? My bet is more than you may think. I have Googled the whole way through seeking multiple diagnoses because I had no idea what I might have been facing. I had joint pain and the only thing I knew of was Arthritis, which from tests I do not have because I don't have inflammation of the joints. I knew from my first misdiagnosis that it wasn't as simple as 'you're bendy', Googled it, researched it and went back with more knowledge, and advocated for better care, and it completely paid off.


You don't really become disabled later on in life
Often we are asked "were you born like that" which 1. you shouldn't be asking that, if you're intrigued about someone's disability there are far better ways to start a conversation, and 2. why can't you ask 'do you need any help' or 'how are you getting on', not questioning our disability. This is a multi-part question regardless. A lot of elderly people become less mobile and would class themselves as disabled. There are plenty of instances of people either being born with their disability or becoming disabled at any point in their lives. Genes can kick in with things like puberty or menopause, accidents happen, you can be born with a genetic condition that gets worse as you get older, things like viruses can leave you with disabilities. Also, mental health conditions and Neurodivergent conditions like Autism, ADHD, etc are all classed as disabilities if it affects your daily life. You may not know you have one of these until you seek medical help. Anyone can become disabled.


We're brave for living with our disabilities
This one is right in the 'inspiration porn' area. The reason disabled people don't like it when they say they're 'inspired' by us is because it's often used when we're just doing our daily tasks. Non-disabled's expectations for us are nearly touching the floor they're that low, so if we do anything independently it's often mentioned about us being brave. Stella Young said in 2012 "what did they inspire me to do?" and I think that's a great quote. If we put our shoes on ourselves, are you now inspired to put yours on yourself? No? Exactly. It's so patronising.


It's fine to use wheelchair-bound
This ableist language is not okay for a few reasons. The first is that for those who need a wheelchair, it's an extension of the legs themselves. Non-disabled or abled people can get around using their legs, so for us our wheelchair is the equivalent. That's why it isn't okay to push us without asking or to store your bags on our wheelchair without asking permission. Also, why are we 'bound' to one? Many wheelchair users are ambulatory wheelchair users anyway but many people who are not will transfer to a sofa, a bed, a chair. They do not stay in their wheelchair 24 hours a day.


Disabled toilets are for wheelchair users only
This is a common misconception. Some disabled toilets have now changed their imagery to include things like walking sticks and invisible disabilities. If you are genuinely disabled, that toilet is for you. If you're using it to skip a queue or otherwise, that is not for you. But on the topic of wheelchairs, a good percentage of wheelchair users are ambulatory, meaning they can either walk, stand, or take a few steps.


Once you become disabled you are disabled forever
False, conditions like cancer and other life-threatening conditions can be covered within the Equality Act 2010 from diagnosis until you're recovered. You may have a condition that when treated or medicated well, you don't consider yourself disabled anymore. Some conditions are untreatable or incurable, however.


We should use nicer language, like 'differently-abled' instead

I saw an article on Medium about why we shouldn't be scared of the word disabled and substitutes just should not be used and I completely agree. Creating other labels is an attempt by some to make it 'nicer' for us but it actually does the opposite. Other labels include 'special', 'challenged', 'handicapable', 
If someone were to call me by one of these disability euphemisms, I would ask them what my other abilities are, or am I special like a magical being? Because these words are just terms for 'different' or 'not normal'. Disabled is the appropriate word to use. The euphemisms are infantilising and if they're used with children it will be frustrating for them to have to switch labels when they turn into a teen/adult. Disability rights activist Lawrence Carter-Long created the hashtag #SayTheWord to advocate for everyone using the word disabled instead of euphemisms. When it comes to using language around disabilities, the National Center on Disability and Journalism has a create dictionary online that you can use to see what is appropriate, although it does advocate for person-first language completely so take it with a grain of salt. The NHS has a language guide here too.


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Being Diagnosed with Postural Orthostatic Tachycardia Syndrome


I thought this day may have never come, but I finally have my POTS diagnosis. I'll explain a bit about what POTS is first, then I'll chat about how I got my diagnosis and the time frame too. 

Postural Orthostatic Tachycardia Syndrome (POTS) is an 'abnormal response by the autonomic nervous system to upright posture'. It means when someone with POTS stands up, different symptoms can occur but this will usually be dizziness (pre-syncope), syncope (fainting), fatigue, nausea, brain fog, temperature dysregulation, palpitations and headaches. Other symptoms can include cognitive impairment, excessively rapid gastric emptying, chronic headaches, tremulousness, sleep abnormalities, orthostatic intolerance, anxiety, visual problems, chest pain, blood pooling resulting in purplish discolouration and bladder problems. There are a number of causes of POTS, but I have what's known as secondary POTS because I have it as a comorbidity to my Ehlers-Danlos Syndrome (EDS), specifically the Hypermobility type.

Things that can worsen POTS are things like excess heat, standing up quickly, dehydration, menstrual periods, the time of day (worse in the mornings), alcohol, eating, and more. There are different ways for POTS to be diagnosed and this will depend on which country you live in and the preferred method of the medical professional. For me, I started off with a GP appointment in December 2019, and my lovely GP referred me to the Cardiology unit in the local hospital. Around January/February 2020 I had an appointment in Cardiology for me to go over my symptoms and I briefly mentioned my EDS and the Cardiologist there said it's common with POTS. I had a series of tests there before I had other appointments such as 24-hour ECG, 12-lead ECG, blood tests, and an Echocardiogram (ultrasound of the heart). 2 years prior I had already had 2 ECG's and one 24-hour blood pressure monitoring. In September 2020 I had a phone consultation with a different Cardiologist, and he said he would chase up on my Tilt-Table Test. This is where you lay flat on a bed that has a footplate (so you lie from the bottom up with your feet at the very end of the bed which felt weird for someone who is 5ft 4") and you are monitored constantly via blood pressure and heart rate. The two female medical staff were lovely but told me they couldn't have conversations with me once the test had begun as it can be distracted and can affect your results. They tilted the bed up (head up) 60-90 degrees (source: BHF) and they dimmed the lights. You stay like this for 20-45 minutes. For me, the test was cut short at maybe 10 minutes as I blacked out and lost consciousness (which is what they're looking for really). If you don't faint, they can give you a glyceryl trinitrate spray to see if it accelerates your symptoms to observe whether you will get dizzy or faint. I was so worried that they wouldn't have the results they needed that I was willing to start it again! I've attached my Instagram post below from my chronic illness account that I wrote directly after it.


Although POTS was first recognised in medical journals in 1993, a lot of medical professionals still have no clue what it is. It's really hard to prove you can faint unless you do faint, so having a written diagnosis is completely worth it. I felt like it took a lot of advocating on my part and being vocal with what treatment I'd like. Basically, from the September 2020 appointment, I was prescribed Bisoprolol which is Beta Blocker that slows down your heart rate and makes it easier for the blood to get around your body. Since getting my diagnosis, my Bisoprolol has doubled so I take one in the morning and one in the evening. Since December 2019 I've also been taking Ramipril which lowers your blood pressure and helps the blood get around the body. They both seem to work well for me and I'm very grateful that they have both reduced my palpitations and chilled my heart out a bit. I have also been 'prescribed' a high salt diet of 10g a day. The NHS recommends for most of the population the intake of salt is no more than 6g a day. The only other things to help are: making sure you don't stand up too quick, wear compression clothing to stop blood pooling, when standing crossing your legs and standing in different positions, drink plenty of fluids, avoiding long periods of standing, and reducing caffeine intake. Exercise is suggested, similarly to EDS, but I find this difficult. I get extreme headaches, cannot do fast exercises like HIT, things like using a cross-trainer make me incredibly dizzy, and things like swimming set off my Fibromyalgia. The best things I can do it using a rowing machine which I don't have, nor a gym pass, gentle stretches, and when I'm up to it, going on short walks. 

I'm really glad that I've finally got my POTS diagnosis as it explains so many of my symptoms and has enabled me to get the treatment I need, particularly helping to lessen the heart palpitations and regular spells of dizziness I've been experiencing. If you are also going through the process of getting a POTS diagnosis or are experiencing symptoms that you are not sure about, then my advice would be to keep going, record your symptoms and do some research around POTS so when you speak with your GP you have a better understanding yourself which should help to explain what you are experiencing. If you ever have any questions you'd like to ask about POTS or other health issues then feel free to tweet me.


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20 Small Businesses to Support in 2021


I decided during the first lockdown that supporting small businesses would be more important than ever now. For most of the Christmas presents we bought, we bought them from small businesses and it was more exciting than buying the same old products from the same huge stores. I've picked out some shops I've bought things from before, and some stores I will check out when financially viable. I hope you'll consider supporting some of these shops in the coming year if the opportunity presents itself to you.



Okay, I am biased here, but my Sister-in-law has her own small business selling scrunchies, masks, greetings cards, bunting and other bits and bobs. She has a degree in textile design and has made items using her own patterns and fabrics. I'm sure she will release more products as time goes on but right now she's just announced her items for Valentine's Day which look so cute. I've bought scrunchies from her before and received a greetings card for my birthday too so I can vouch that she's a hard worker with great quality items. You can check out her Etsy store here > Handmade By Helen Liz.



I first saw Alice's small business over Twitter and have bought multiple pairs of earrings and keyrings from her since. She makes items using Polyclay and as I'm writing this post I'm realising there are a few new pairs of earrings I am eyeing up. Her products are worth a lot more than she charges and she is doing so well over on Etsy. I love all the different colours her earrings are and since I love wearing drop earrings her products are perfect for me. You can check out her Etsy store here > AlicexLizzy.



I bought a beautiful white and gold ring dish from Love Me Unique for myself and Andy for our wedding and engagement rings instead of putting them in their ring boxes. We have them out in the dish even though they're not being worn yet. Our dish is like the one above but has L & A on and I absolutely love it. I know we're well ahead of our wedding (which has been postponed for the third time!) but it's so nice to have the rings out on our pretty dish. Love Me Unique also sell ring cones, foiled prints and Christmas decorations if you'd like to check out their store here > Love Me Unique.


Sootmegs is actually a store I bought from a few years ago now as I wanted to wear badges for when I used the disabled toilet in public if it wasn't inherently obvious that I had a disability. They don't just sell badges for disability, they have LGBTQA+ badges, mental health, social distancing, general feelings and custom pins. They have badges for everyone and the bright colours really help others pay attention to them. I have mine on my sunflower lanyard to help highlight that I have an invisible disability and I know I'd like the public to read them and acknowledge them, I feel more confident using services available to disabled people just by wearing them. I'll have to pick up some more soon as they have badges for neurodiversity and more of my health conditions. You can check out Sootmegs Etsy store here > Sootmegs.


I've only recently discovered Tree Market and I love their store. I was browsing through Depop the other day and saw that they sell vintage books and other goodies and it was so lovely to see there. Because of the pandemic, I've not been able to go to stores to see products like these, so obviously, I had to pick something up for a present for someone. If you'd like to visit them, click the link here > Tree Market.



I've followed Cally who makes Constellation Co Jewellery on Twitter for a while, so I have seen her jewellery before, and it is stunning. I'm obsessed with the piece above, the Celestial Space Pendant Necklace (£16). I mainly wear rose gold jewellery which is why I haven't bought it yet, but if an event comes up where I need to wear gold, I can guarantee this is the first piece I'm buying. I love celestial things, I even have most of my gallery wall in my living room based around celestial things. If you'd like to check out Cally's Etsy store, click the link here > Constellation Co Jewellery.



Stitch & Ink is a sustainable and plant friendly shop that make some really nice home decor and accessories as well as some items for your doggy friends. Whether it's prints, candles, decorative home pieces, face masks, makeup bags or a doggy bandana this shop has something you should like. I'll be looking to buy from here in the future and if you like these type of products it's worth checking out their Etsy store, click the link here > StitchandInkbyAC.



Dumpling Art Design sells some really cute gloss vinyl stickers, art prints and postcards and I love the style of the designs. I noticed that they have done some animal crossing designs which I particularly like as I'm obsessed with this game right now with Maple, Paté and Merengue being my current favourite characters. They have a number of different designs so you should be able to find one you like or for someone as a gift. If you'd like to check out their Etsy store here > Dumplingartdesign.



If you are looking for handmade teddies or fabric bags then I'd check out Fleabag Crafts as they have some really nice designs. I particularly love the vintage campervan bag in the photo above and could see myself using one of these in the future. They use both new and reclaimed fabrics and have a range of designs that would make perfect gifts or a nice treat for yourself. The bags come in different styles including tote and shopping ones so would come in useful. If you want to check out their Etsy store click here > Fleabagcrafts28.



I have started to pick up more handcrafted jewellery recently so enjoy browsing through designers such as KLAI Studio. There have quite a few different colours and designs that are unique compared to items you can buy on the high street, such as their marble earrings. They sell necklaces, bracelets and earrings which includes some clip-on earrings which I think is great to include those who need to wear these and don't want to be limited to what's in a normal shop. To check out their Etsy store click here > KLAIStudio.



I attempted to hand-knit myself a blanket once and can tell you it was a lot harder than I thought it would be and it didn't turn out as it should have so I can really appreciate the detail and quality finish of these knitted items by Alice. She's made a few different items including scarfs, snoods, headbands and blankets and has different colour options. These could be perfect gifts to give to someone close to you, or as a treat to yourself. If you'd like to look at their Etsy store click here > TheKnittingFoxGB.



Blighty's is an independant family-run gift shop that sell gifts made in the British Isles and are proudly supporting British manufacturing. They also like to discover talented makers on Instagram and at trade shows. They have an online shop on their website where you can browse through a whole host of products amd gifts. If you are local to Cranbook, Kent they also have a gift shop on Cranbook high street to visit. To have a look through all the products they offer you can click here > Blighty's. 



Paquita Ruby Jewellery sell a number of different pieces of metal jewellery in gold, silver and rose gold with many including gemstones. They are quite subtle pieces that could be worn regularly with different outfits which is great. Their products include earrings, bracelets, necklaces and rings and they have plenty of different designs to suit different tastes. To see what they are selling, you can click here > Paquita Ruby Jewellery.



The Doodling Company make personalised and handmade gifts for special occasions including wedding-related items. Personalised gifts can make really special presents for someone and show you have put thought into it. The shop sells things such as bags, cards, signs and decorative items that all can be personalised to the recipient. If you want to check out their Etsy shop, you can click here > TheDoodlingCompany.



When I asked on Twitter for small businesses, Terranova Clay Creations posted their shop and I went on and immediately fell in love with a couple of items that could be used for my wedding but would also look cute in my house, so I purchased them straight away. One of these is the one in the picture above. They make some really cute terracotta ornaments, garlands and even cards decorated with clay pieces. If you'd like to see what they have, you can check out their Etsy store if you click here > TerranovaCCreations.


Laura produces some amazing art and I love her style. She paints acrylic landscape paintings and art prints. I particularly love the one above with the celestial theme as this vibe is very me. The detail in these paintings is really impressive and they would be great as decoration in your home or also for giving as a gift. If you'd like to see more of what she makes, you can see her Etsy store if you click here > LauraCarolineArt.



AliceandIvy sells boutique stationery designed to bring a smile to your day which includes cards, prints and paper goods. I've bought some postcards from here before as I really like the style and have put them on my gallery wall and in my kitchen. They have funny, motivational and cute designs including ones for different occassions with many different options to choose from. To check out their Esty store, you can click here > AliceandIvyuk.



I came across Doodles From My Brain on TikTok and thought his style is really quirky and fun. He has a lot of fun with his designs and lets his mind run free when creating. He makes pins, patches, cards and more all in his unique style. There are so many products to browse through you should be able to find something you like. He's also made his own books which would be worth checking out. To see the Esty shop click here > DoodlesFromMyBrain.



If you're looking for some pretty women's home and lifestyle accessories then it's worth checking out what Robin and Thorn offer. They have items such as pin badges, bags and purses, homewear, cards, notebooks, beauty and skincare products and more. I love collecting pin badges and particulaly love the the witch one above. If you want to see all of the products they offer on their website click here > Robin and Thorn.



This shop creates pretty fabric items including bags, gifts, face coverings and decorative homeware pieces. They have a number of bunting designs in different colours which I think are really cute. There are items that could be for yourself or make great gifts for others. If you want to see their Etsy shop, click here > madebymeinyorkshire.



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