Big Fun Run Liverpool - Raising Money For Ehlers-Danlos Support UK

On the 13th of August, I will be taking part in the Liverpool Big Fun Run to raise money for Ehlers-Danlos Support UK. I don't often talk about this but I thought this would be a good chance to do something to raise money and awareness. Due to my condition I probably won't be able to run the 5K, but I'm going to get through it the best I can. This fun run is one for people of any age, and you can run, jog or skip depending what you want to do so I'll probably be doing a little combination these!
Last year I was diagnosed with Ehlers-Danlos Syndrome (EDS), the hypermobility type. This condition can cause more really bad joint pains, sometimes on a daily basis, as well as other problems. I try to get on with my life as normal, but sometimes it can stop me doing what I'd like to do. EDS is a connective tissue disorder that affects the joints, collagen, internal organs, heart, digestive system and many other areas of the body. It can bring both mental and physical symptoms such as pain, dislocations and fatigue, and is commonly misdiagnosed.
As there is not much awareness of my condition, I think that it would really help the charity if I could help promote this and to raise some money. Myself and Andy will be completing this fun run together and have set up a joint Just Giving Page. I'd really appreciate anything you can give to help us achieve our target. You can donate via the link or via the text code at the top of the post. Thank you so much in advance if you are able to donate anything!

Read more

What It's Really Like Living With A Disability

Me with my walking stick

I feel like the more and more I seem to open up about having invisible illnesses, the more 'advice' people will try to give me, which often then makes me zip my lips as I feel like there is no point anymore. Unless you live with someone who has a disability, chances are you have no idea what it's really like.

I have Ehlers-Danlos Syndrome (EDS), Fibromyalgia and Postural Orthostatic Tachycardia Syndrome (POTS). I have the Hypermobility type of Ehlers-Danlos Syndrome but I will briefly explain what that means and then explain why the hypermobility and fibromyalgia sync together. EDS is a connective tissue disorder, meaning that my skin, blood vessels, ligaments, tendons, internal organs, bones, etc are affected by it. It's a genetic condition, so you either inherit it from a family member (which we're pretty sure is my Dad since he is showing a lot of signs of having it) or a mutated gene. Currently, the medical world have not discovered the specific gene in the hypermobility type and there are various tests that I've had to go through to be diagnosed. Although EDS has been recognised for decades, there are some people in the medical field that are dismissive of this condition as most symptoms are 'invisible' and especially younger women are believed less which is so frustrating. My Dad was sent to see a geneticist who simply told him that she didn't believe in EDS. 

With having the hypermobility type, my joints subluxate easily. They move around but don't fully dislocate, and since this is often invisible to the eye, a lot of people simply don't believe me when I say it's happened. My other symptoms include joint pain, extreme fatigue, digestive problems, migraines, IBS, nerve pain and other horrible symptoms. In another life I'd be a great gymnast but unfortunately, it brings a lot of negative things into my life. 

Annoyingly, sometimes to rectify problems, for example going to the dentist (I'm not even going into dental problems people with EDS have) you need to have a local anaesthetic. People with EDS seem to metabolise this quicker than the average human, often making us need more of it or a stronger dose. A year or so before I was initially verbally diagnosed, I had a filling and the anaesthetic pretty much didn't work at all and because it was a rushed appointment, I felt the whole thing. It was so painful that I was so close to passing out and could feel myself slipping and couldn't do anything about it. I'm not going to lie, I've never been back to a dentist for fear of things like this happening again.

People assume that if you're in pain that your joints are stiff. Often with me, this is in fact not the case, as I'm really bendy and don't need to stretch the joint out. Most often my pain is due to joints moving, muscles seizing up with Fibromyalgia or nerve pain. I've managed to decrease my nerve pain in certain areas, like in my arms and wrists through using Gabapentin. I feel like this medication has genuinely saved me since the pain was like lightning bolts going through my veins and simply cannot use my arms or hands in such pain. It is completely debilitating. Luckily I don't experience this as much now but I still have nerve pain in various other parts of my body.

With fatigue and insomnia, the number of times I've heard people say to me that I just need to go to bed earlier, to switch my phone off, to simply try harder to go asleep. There are times that I've been exhausted and have still not slept all night and had to power through the entire next day on no sleep to the point of nausea. I can sleep for 12 hours a night when I do sleep and still need to nap the next day. A routine does help and I go to bed and get up with my partner, but some days I can barely stay awake. It's things like this that prevent me having a job outside of my house, as I'd forever be calling in sick to say I'd had no sleep and can't function, or I'm in too much pain to get ready never mind leave the house and do an eight-hour shift. I grind my teeth in my sleep too, and last week my jaw seized almost completely shut, gave me an intense migraine and I couldn't eat solid foods and had to awkwardly whisper the entire evening. How would that possibly work in any job? Sorry boss, I'll have to write on a whiteboard instead of talking, not communicate with anyone else, close my eyes for the rest of the day and get nauseous because I can't eat and only drink water.

I've been told that if I need to sit down all day then an office job will be fine. Aside from the fact that I'm sick to my teeth of being given 'advice' that is basically a demand, an office job is not 'fine'. I can't drive, and public transport is still not great for people with disabilities. Depending on where I'd work, it could take me over an hour to get somewhere in my city due to walking slow, difficulties with using transport and stopping for a sit-down. This is where it's confusing some people. 'If you need to sit down, just get a taxi to work then sit down all day in an office' they say. Most days I need to elevate my legs as I get a lot of pain in them. The muscles hurt and my knees are so dodgy that often they subluxate and I need to wiggle them into place again which hurts so much. I get back pain and often need to lie down flat to alleviate some of it. I get migraines if I look at screens too much or if I'm in a noisy place. I had to leave my future Father-in-laws's wedding early last year because the laughs from the speeches and the lighting gave me a huge migraine.

As a kid I was always the one out of me and my brother to catch illnesses. I'd regularly hurt my ankles from over-pronating but since it seemed so often I didn't bother telling people and would limp around school. I've noticed now, that if my partner picks up a cold or something else from work, I seem to catch it and have it for weeks. Two years ago I got a cough in the first week of September. Two weeks later I flew to Poland and once I landed I needed throat sweets to numb my mouth and throat, otherwise, I'd have a coughing fit and my inhalers were useless. The day after I landed home I felt really ill and a few days later went to the local Walk-In Centre. I was told I had a virus and it should be completely gone within ten weeks. Well, it lasted 12 and it was the most horrendous time of my life. I would choke constantly and need water almost every five minutes. I was throwing up multiple times a day and anything that had crumbs, spice or a thick sauce made this multiply. I felt like a couldn't breathe but my sinuses were clear. I wouldn't wish half the experience on an enemy. It was right at the time that all the family and friends birthdays popped up and I even got engaged in this time as it was on the last part of the illness. We went away for my birthday and I knew Andy had brought the ring (see more on this here) and I said to him listen, I know you were going to propose at my favourite castle, but please don't. I was throwing up constantly on that trip and I knew I wouldn't get to experience how magical it felt. I booked us a trip back to Newcastle where we met purely so he could propose two months later as I knew he'd love to do it up there and although I was still ill, I finally got to have a nice time. Can you even fathom how horrible the entire autumn and part of winter was being so ill, and having the other problems I have too?

My partner pushing me in my wheelchair

Another huge misconception is that you have to be paralysed to be in a wheelchair and therefore you shouldn't use one if you can walk and that also means you can't use disabled toilets. First of all, ambulatory wheelchair users exist. People may use them to prevent fatigue, injuries, flare-ups, and pain. They may also use other mobility aids for these reasons too. The number of times I have used a wheelchair for these reasons and moved my legs and the looks of horror I've received is honestly ridiculous. You know what type of people don't do this? Children. It seems to be the age category from my experience of roughly 40-70 where people look at me rudely. People closer to my age and children really don't seem to care that often. I do get people walking straight past me and their bags hit me in the face. They hold their cigarette close to their leg in between puffs so the smoke goes straight into my lungs and as someone with mild asthma it's not that nice. People have tutted if I'm coming down an aisle and it means they need to move slightly so that I'm able to come through and they can get down the aisle. I've had people only talk to my partner because they wrongly assume I can't communicate. People have seen my engagement ring and looked so confused as to how I could possibly have someone who loves me enough to marry me, then I can see their mind wandering, almost confused as to how I'd get down an aisle and how I'd possibly wear a wedding dress. The only way to fight this seems to be smiling and being polite. I don't have the energy to almost have to prove my disability to people anymore. And currently I don't even have a blue badge so it's dangerous even getting in and out of it, but I bet if I do get one in the future I will no doubt be left with horrible notes on the windscreen telling me I don't look disabled. Going to the toilet is awful too. In Manchester recently there were locked disabled toilets, lifts not working, doors labelled as disabled toilets only for them to have a changing mat with no toilet in. Also, the key thing is that you need to scan to open it or get a member of staff to open the door. No automatic opening, so by yourself it's hard to get in and out of the door. How are disabled people supposed to be more independent if there are multiple obstacles we are supposed to get through just to do things abled people are okay to do like use a toilet?

There is a stigma too about using painkillers. First, I've been told by people with little or no medical experience to just take some paracetamol and ibuprofen and my pain will go away. They don't work on me and despite me saying this I'm often not believed. I'm currently using Tramadol for pain prescribed by my amazing GP, only after trial and error of lower strength pain medication. I have to go to appointments for pain management basically to prove I'm not getting addicted to it. People sometimes don't believe I have pain if you can't see where the pain is. Often I get told that if I exercise my pain will go away. Even though they know all the rest of the symptoms this is what I'm told, and it's frankly not the truth. And because I'm overweight this is the default response and it is infuriating. You know when I turned overweight? When I started to experience all this pain to begin with and my GP seemed to think stress is what caused it after numerous tests. Not because I over-ate. Not because I got lazy.

Stress is what triggered the Fibromyalgia and basically ramped up my EDS symptoms that I had been brushing off all of my teenage life. With Fibro I get widespread pain which consists of burning pain, stabbing pain, aches and more. Most of the time it affects my back, legs, arms, and head. I also have increased sensitivity, so this includes light, heat and sound. It brings fatigue and poor sleeping. It brings cognitive issues known as fibro fog or brain fog, so I forget things easier compared to when I was a teenager and I find it incredibly hard to concentrate. I can't control my body temperature sometimes, so I can go really hot and really cold quickly, or some parts of my body are so hot and others feel freezing. It can make you feel really nauseous and irritated. Periods are a big issue too. You get period pain, which flares up your Fibromyalgia in the hips, legs, and back. Because I also have lower back pain due to EDS, this is amplified and I am in horrific pain. For these reasons, I take multiple contraceptives supplied by said amazing GP to stop me from having periods. 

For these reasons I genuinely believe most abled people simply have no idea what we go through. In my eyes, I don't have it anywhere near as bad as others, and I know not to compare apples and oranges but if all of this happens to me, it must be dreadful for people with fewer abilities than me. How people expect me to live a normal life and have plenty of children and hold down a job is baffling. With EDS I have a 50% chance of passing this on to a child, regardless of the god-awful symptoms and experiences pregnant people with EDS go through. I've discussed why holding down a job is too difficult and that's why I work for myself from home. I'm judged constantly by people for not being able. People don't understand why sometimes I can't attend social events, be out and about for a whole day or even the simplest of things like look after myself. My partner sometimes has to come home from work earlier or use his holidays to help me bathe, feed myself and more. I lost all dignity with my disabilities and I'm glad my partner is so understanding. Without him, I don't know what my life would be like. I wasn't disabled when we began our relationship so he has been through this whole experience with me. I've learned to only see a small group of people now due to prejudice and lack of understanding. I often leave fun activities and family gatherings in a ton of pain. How do you explain this to a perfectly abled person?

The thing is, often for people to understand what it's like, they either have to experience it themselves or be close to someone else going through it. I'd never want anyone else to feel the way I do. There is no cure for EDS, and while Fibromyalgia is also only confirmed by certain tests and not genes, I have a double whammy of conditions that are not understood properly. I might have even more conditions in the future, and heart problems are a particular one I'm worried about as I often have palpitations but they aren't bad enough (along with other symptoms) for me to have POTS (Postural Orthostatic Tachycardia Syndrome). I went through this journey mostly through university at first and had to fight tooth and nail to finish my degree even though I couldn't possibly use it in a career as I'm in too much pain to be a solicitor like I had planned. 

The day someone other than my partner fully understands and accepts my disabilities will be a miracle.

Read more

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 feelingsI 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 keyIt'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 bodyYou 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 youYou 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 industryTwo 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 amA 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 mustTo 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 keyI 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 withI 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 toFor 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 timelineJust 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 beliefsOften 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 lifeI 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 thinkThis 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 instinctI 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. 

Read more

Body Confidence - In the Water | Blogtober

I don't know about you, but I lack body confidence. The worst part about trying to be active is being seen out in gym gear, or poolside in next to no clothing. I was on holiday in August and was dreading being seen in barely any clothing after not going abroad for 4 years and having put on a fair bit of weight to my dismay. This is where Miraclesuit* comes into play, and it aims to make you look 10 pounds lighter in 10 seconds or a bit longer as I had to get myself into it first!

In the same way that spanx smoothes out your lumpy bits, the Miraclesuit is made out of Lycra Xtra Life spandex to suck you in and fit to your body shape. Inside the swimsuit is an underwired bra to support your boobs as you swim. I have a size E/F chest and there wasn't enough room for my boobs but after a bit of moving around they didn't pop out, so that's a bonus. The scooped back is really flattering on and gives me a bit of extra confidence. I don't usually have my back on show but there is something freeing about having something non-sexual on show.   They do retail for around £100 which is something to take into consideration. For me, that isn't affordable but only because I don't swim regularly enough for it to be worth it. I am trying to change that though. I have Fibromyalgia and Ehlers-Danlos Syndrome and swimming is supposed to really help your muscles ease up but to exercise them too. On holiday I discovered I can no longer do breast stroke without being in a lot of pain but everything else is great! Having more confidence in turn produces more motivation to get out there and swim and I genuinely think the Miraclesuit will help me with this. It may not be a miracle but it gives me the confidence boost I needed. Have you tried out the Miraclesuit range? [previous post]

Read more

2020 Is Approaching Us, So What Have I Achieved In The Last Decade?

At the beginning of 2010 I was 16 and about to finish the last 6 months of GCSE exams. I'd already moved to my Dad's house, had my appendix out, started a relationship with a boy I liked and mourned several people from my family in just a few close years. When I opened my exam results I was nervous, but I achieved a double A* in ICT, A's in Science, Religious Studies and Child Development, B's in English Literature, English Language and History, and C's is Spanish and Maths. At this point, I'd already decided that for my A-Levels I would choose History, Sociology and Psychology with an AS Level in English Literature. Throughout the next two years of studying those topics my baby sister Sofia was born and she is honestly the light of my life, my little best mate and she is a joy to be around. She's just turned 8 and it just shows how fast the years have gone by. I started going out drinking and had an amazing time with friends. I applied to study Law at Northumbria University and was accepted when I achieved an A in Sociology, a B in History and Psychology and a C in General Studies in my A-Levels.

I moved up to Newcastle and still managed to communicate with my little sister despite being 3 hours away from her. I met my flatmates and for the next year, they were all great friends. The closest person I became friends with was Andy, and we used to sit and watch TV together every time we couldn't be bothered to go on a night out. By two months in I knew he was someone I highly valued and was an all-round lovely person. Not long after the next semester started I ended things with boyfriend and a few months later ended up dating Andy. In our third year of uni, we got our own flat together and it tested our relationship, especially while both doing dissertations and end of year exams but it showed our strengths far more than weaknesses. We both graduated in July of 2015 and moved to my Dad's the next month.

During my uni experience, I began to develop pains in my body and couldn't decide whether it was in muscles or bones. I don't know why it had to be just one of the two but it turned out it was both plus nerve pain. After a lot of pushing to see a rheumatologist I finally was able to go and a doctor said I had Benign Joint Hypermobility Syndrome. This was an out of date term for Joint Hypermobility Syndrome but regardless I wasn't listened to properly and ended up back in the same hospital for another opinion eight months later. This doctor formally diagnosed me with Fibromyalgia and only verbally diagnosed me with Ehlers-Danlos Syndrome. I only found out it wasn't on my medical notes when I had a letter through the post that didn't mention it at all which only enraged me. It took until April 2018 for me to have it confirmed by a doctor and added to my medical notes. It took 4 years, which isn't even 'that' long in regards to being diagnosed with this condition. All in all, I've now been experiencing pain (I did have pain with EDS before but it was nowhere near as extreme) for over 6 years now. 

An achievement that really should be highlighted is starting this blog. It began in February 2014 so we're coming up to the 6 year anniversary in a few months. I've worked with many amazing brands and PRs and although sometimes it's hard to keep up when you're in pain, I'm so thankful I can post when I can and some brands are understanding of this. I've managed to review hotels and restaurants, share my experiences of living in Liverpool and Newcastle, share holidays with people and review a lot of makeup and skincare. I'm really grateful for the opportunities I get.

Since graduating, we went to Los Angeles together as I won a competition to go which gave us a range of emotions and experiences and we'd definitely go back again. We saved up for years and finally last year we were able to buy our first home. Aside from leaving the kitchen cupboards in their place and painting them, we fitted new worktops, tiled the walls, plumbed in a new sink, changed the flooring and the result went from a dark scratched up kitchen to a bright white and grey one. We also fitted laminate flooring in four rooms of the house, dug up a fair bit of the garden, daringly painted our living room navy blue and so much more. That was a whirlwind of four months of renovation and it was so worth it. We made the decision to not have a TV in our bedroom too, to allow us to have a better nights sleep and that was another great decision for us both. Instead of having a dining room we have a creative space and beauty area room that stopped us cluttering up other rooms. Our house is our safe space and right now I don't even want to think about moving at some point.

I suppose the last big achievement for me was deciding to get married. In December 2017 Andy popped the question on a trip to Newcastle to visit for the first time since leaving. It was absolutely freezing! A year later we booked our wedding in, so in the first half of 2020, we will be getting married. Obviously, we have had to split the money between the house and the wedding, with the house being a priority, but 2020 felt about the right time for us. Not everything is sorted yet but we are most of the way there and glad we've made the majority of the decisions by ourselves. I will share a lot of the process and things like the invitation and the dress post-wedding and I'm looking forward to that too.

For things I'd like to achieve in the next decade, there's only a few things I'm certain will happen. The first will be to get our own dog. Our family dog Charlie lives with my Dad and has just turned 12 but I do miss having a dog in the house. I do think we will eventually move house in the next decade, partially for another project to work on as we love renovating, but also for a bit more space. I have my fingers crossed that I'll continue to work from home on blog things and move properly into freelance work too. We are hoping to have our honeymoon in Disneyworld in Florida but it really depends on money. We are thinking about having a 'minimoon' not long after the wedding so that if we don't get to have our dream honeymoon then at least we can have a little holiday to have a break. Aside from that, I'm not really sure what will happen. 

Read more

Making Pain More Manageable with ActiPatch

Since being officially diagnosed with Ehlers-Danlos Syndrome (HT) and Fibromyalgia earlier this year, I have been seeking a quick pain management system for both joint and muscular pain. Luckily I was able to try out Actipatch* (£19.99) which aims to deliver up to 720 hours of pain relief. After over a year of pain with nothing much working I was definitely intrigued to try this out.  The Actipatch works via Electromagnetic Pulse Therapy where low level pulses stimulate the cells in your body to speed up the recovery process. If you've ever had a massage from those chairs in the airport where it seems to vibrate, this is a bit similar. It's such a small device and you use two plasters to stick it onto the area, meaning it's so easy to apply and you can pop it in your handbag if needed. The Actipatch has been proven safe and effective to use and can be worn by people with diabetes, arthritis and other conditions that require the device.
The box comes with a ton of the plasters so you don't have to buy your own which is handy. It also comes with a little information guide with FAQs, a step by step guide and the usual info that comes with these types of products. I've seen a few people trying this out and after trying it on myself, I have to say it did relieve some of my pain but obviously some areas are hard to get to - i.e. hips, and some places like your fingers just wouldn't work with it. It doesn't aim to take all of your pain away, just take the edge off and for the price, the product is definitely worth it, especially since you get up to 720 hours worth of relief with it.

Read more

Why I Love Blogging

Writing until my heart is content

I've always loved to write. Throughout school I achieved high grades in English and even achieved an A in my AS Level English Literature coursework piece, albeit was a creepy horror story but that's besides the point. If you give me a poem I can spend hours annotating and interpreting it. I never realised how much I loved English until I moved to University and no longer needed informal skills and it was all about professionalism. Through blogging I can write both formally and informally. I can write little chatty posts like this and keep going until I'm satisfied. I don't need to perfect it to make sure it's of good quality and there isn't the pressure you see in education to pass the exam, not to develop your skills.

Taking photos

Although the camera I use is actually my boyfriend's bridge camera, I've started to take a lot of photos for myself. He obviously takes outfit and face photos as I can't be in two places at one time. I've began to find my own style and edit the backgrounds on Photoshop since I don't own light boxes to get that diffused light effect. Not only has it made me appreciate the hard work that goes into taking photos but it's made me love my Instagram more!

Meeting people

I've only actually met two bloggers face to face and it took a lot of preparing. I have anxiety and it gets to me at the worst of times. No matter how you're feeling, I've met some amazing bloggers online who are there to talk to whenever we need each other.  If I'm in a blogging dilemma I usually talk to Gemma from Miss Makeup Magpie as she holds all the answers! Recently I was diagnosed with both Ehlers-Danlos Syndrome and Fibromyalgia and both Tania from When Tania Talks, Sarah from Sarah in Wonderland and Beth from Mermaid In Disguise have been absolute darlings in helping me come to terms with a new illness. For general chit chats about beauty and all things that come with it, my favourite bloggers are Abby from What Abby Loves, Katie from Katie's World of Beauty, Bex from Bex Renshaw and Jemma from Dorkface. All of these ladies are lovely and hopefully I'll have the chance to meet them in person one day!

Working with brands

Along with meeting some amazing bloggers online I've had the pleasure to work with some amazing brands in the nearly 1.5 years I've had of blogging. I've worked with Makeup Revolution a lot and had the pleasure to not only work with Benefit Cosmetics but have attended one of their events to the public as a blogger which was a great experience.  Having a beauty, fashion and lifestyle blog with the occasional food or travel post makes my experience blogging really amazing. Some of the opportunities I've had through blogging have been close to life changing and I love working with brands on a professional basis whilst being able to have a giggle now and again. After all, blogging should be an enjoyable experience.

Why do you love blogging?

Read more

What It's Like To Live With Chronic Illnesses

I don't tend to really write about my health online, not only because I don't want to dwell on the fact that I'm not well, but only because I don't want it to seem like I limit myself. I don't want those prejudicial thoughts that immediately pop into people's heads that I can't do things without asking me first. I've been having a real hard time lately due to the weather changes, stress and anxiety so I thought it was fitting that I lay out some of the problems I experience that probably a lot of other people go through too.

Not Looking Ill

This is something that people with 'invisible illnesses' deal with a lot. If someone has a cast on their broken leg, it's quite clear to people that they're in pain because of this injury. If you have pain in your joints, muscles and nerves, people can't see the problem and therefore don't think you look ill. If I have makeup on people assume you're perfectly healthy - I don't want to look ill, and I'm sorry if you think makeup equates to being fine. If I can't attend an event and someone sees me, they will ask why I can't go because "you look fine". Your appearance has nothing to do with whether you're ill or in pain, so these assumptions can really hurt. 

Being Young And Ill

I have a wheelchair that was given to me by my Auntie to help when things get really bad. Often I'm in pain the day after an event, such as charity walks, taking blog photos, going shopping or lifting heavy objects. Although I've only been in the wheelchair roughly 4 times since I got it last year, I get a lot of stares from people because I'm young and in a wheelchair. People will assume I'm paraplegic so when I get out of the chair there are dirty looks. I've had the comment about it being a shame that I'm so young but I'm ill like an elderly person. I can't change any of these things, so yes, I'm 23 and chronically ill.

Packing Extra Things For Trips

Going on a trip, whether it's a little hotel break or just a day out requires packing things to help me out. Most of the time I need a spare pair of shoes, usually the memory foam Skechers I have that makes it feel like you're walking on cushions. I need to pack wrist supports in case they start hurting. I have to write a checklist to remember medications and a pillow for longer car rides. I can't do spontaneous trips not only down to anxiety but also having to make sure I have everything.

Not Getting Better

What some people don't understand about chronic illnesses is what the word 'chronic' means. A chronic condition or disease is persistent and long-lasting. They cannot be prevented by vaccines or cured by medication. I have three chronic illnesses: Asthma, which is a chronic respiratory condition, and two chronic pain conditions, Fibromyalgia and Ehlers-Danlos Syndrome. They are managed by medications but cannot be cured so I take offence when people say I'll hopefully get better soon. I appreciate the sentiment but I'd rather people say that their thoughts are with me or that they hope I feel a little better.

Sensitivity To Uncontrollable Things

This is a hard one for some to understand. I'm more sensitive to light, sound and temperature and it drives me mad. If you show your phone to me on full brightness it can trigger a migraine and it will be a completely innocent mistake. If you blast your music or shout close to me it can trigger a migraine. If I'm in the car I need to keep sunglasses with me as the sun can pop out of nowhere are it will hurt my eyes.

Opinions Of Sorts

A lot of things change depending on what condition/s you have. Pain management may be in the form of physiotherapy or it might be medications. How much you can move, how much energy you have, what extra items you may use as aids depend along with many other things. No matter what condition you have, most spoonies have the opinion that every person matters despite them, although I have come across the odd person who measures value depending on your condition. We're all people at the end of the day, and this is one thing we face daily. People will always 'have an answer' or compare your condition to someone else. I've actually had the 'think of the people in Africa with no food or water' which has nothing to do with being chronically ill. I think there is a clash depending on whether you're registered as a disabled person or not too. There is such a spectrum when it comes to chronic illness so it doesn't surprise me when there are varied opinions.

What Other Spoonies Think:

@ellexmay "Being asked how can I be so tired because I haven't done anything"
@findingmygay "Getting called a hypochondriac. Using illness as an excuse. Friends making plans knowing you can't do things and expecting you to keep up"
@dreamsglitterxo "A lack of understanding or empathy"
@wonderlandblogs "I'm not too young or too pretty to be chronically ill. Illness doesn't discriminate. It also takes various forms, and people may have the same condition but be affected very differently. Never assume, judge or compete"
@beckieeschle "Feeling awkward for asking to sit down because it's an invisible illness and nobody can see that you need to sit down. Being told exercise will make it better and to just push myself. Getting told that you're so lucky to lie in bed all day"
@neesharees "I'm in permanent pain and when I say no to doing certain things, people try to coax me to do it because I look fine. If I hear one more person suggest doing yoga I will punch them in the face"
@wilson16jade "Having panic attacks at work and being told not to cry because it's all in my head"
@curlysuereview "That a chronic illness is life-long and I won't feel better tomorrow, next week or next year. People lose patience when caring and they wonder why you're not magically better"
@shambiwolf  "Treating you the same as non-ill people and holding you to the same standards can be difficult. I was ill and was told to quit uni or hold it off until I got better. I was asked to leave my internship due to my health and received every PC excuse they could muster which affected my mental health"
@rosettaxoblog "Being challenged for using the disabled toilet even though I had a radar key"
@eleanormaem "People give up on you"
@wildonesweare "People don't realise that medication doesn't always help or doesn't magically stop you feeling shit and having symptoms. When you're being made to feel like you're using your illness or making it up. Having a work newsletter that asked people to stop being poorly as it affects patient care"
@betternotstop "I get super exhausted every day and have to remind people often that the pain is ALWAYS there"

It seems like the biggest issue brought up by other spoonies is what other people think and their actions. We get on with being in pain and we don't mention it every single time because for some the pain is every minute of the day. The prejudice from able people and negative actions that they take seems to be the problem, hence why I've written this post. I'd love to hear more thoughts in the comments section about what your main issues tend to be or some advice you'd give to help others.

Read more

AD | Disabled Dating Ideas

It's been a few years since I started to go through the process of appointments and referrals after developing more symptoms that were impacting my daily life. Fast forward to now and I've been diagnosed with Ehlers-Danlos Syndrome and Fibromyalgia as well on some ongoing investigations for Postural Orthostatic Tachycardia Syndrome and migraines. Having a disability is something that you have to take into account when it comes to doing any activities as there are often considerations you need to make to ensure you can have a safe, enjoyable, and accessible time. There are many things to take into account when looking at accessibility which will vary for different people, but there are a few that I have experienced when going out, sometimes this involves me using a wheelchair or crutches. Travelling and accessing a location gives a few things to consider such as; whether parking is close, the condition of paved areas (particularly for those using a mobility device), if there are ramps for any stepped entrances as well as handrails and lifts being available. Having disabled toilets that are easily accessible are very important as this is often the only type of toilet that can be used by people with disabilities for a variety of reasons. 

The seating arrangements inside venues are also important to ensure they will be comfortable and have enough space to get wheelchairs and other mobility aids through between the tables - this is something I have had issues with previously at a few places. Ensuring places are well lit can often be important, as well as checking if there is any lighting that could cause issues - one I have issues with is strobe lighting as this can trigger migraines for me. How loud somewhere is can affect those that are deaf or hard of hearing or have sensory processing issues so making sure it's either not too loud or has quiet areas will be important. Accessible reading materials such as menus will be needed for those who need larger print, different coloured paper, or braille versions so venues providing these is important to ensure people who are blind, partially sighted or have disorders such as dyslexia are able to still read them. Single Disabled is a disabled dating site that has put together a video on their YouTube channel called 'Date Night Ideas For Blind People' to help you find something suitable. Their channel is going to focus on a range of disabilities in detail with the content to be uploaded, to help people with different disabilities find a dating option that works for them.

When it comes to dating when either you, your date or both of you are disabled or have a chronic illness, there are a whole host of things that you can do that could still be accessible and mean that you can have a great time. Due to the ongoing current situation we all find ourselves in, many of us have been making use of video calling to keep in touch with our friends and family. This is also a great option to use now and in the future, for a date, as you can do this from the comfort of your own home by using your tech to suit your accessibility needs. It can also be used as a good backup for those days when you have planned to meet up in person but your conditions have flared up which means that's not possible anymore. For when the world has returned to normality and it's safe to be out and about doing things again there are a number of things I can think of that could suit a good date idea. Going to the zoo or an aquarium has plenty of things to see and do that will give you and your date plenty to talk about. They are often well-paved/floored and have plenty of guides as well as having websites that will normally have information about accessibility so you can easily check before you go. Museums and art galleries can often be more accessible with larger spaces to get around and normally have some type of guide which can include 'talking guides' that you can carry around with you or larger print/braille guides with the information in. Going to a pub quiz can be a fun and interesting option as it gives you something to talk about during your date and can be a nice informal way to get to know someone.

If you fancied doing something a little more intimate or quiet, going for a walk in a park, if possible for you and your date, can be relaxing and be a great way to chat without facing them all of the time or eating in front of each other. If you didn't mind having some food together but aren't ready for a more formal meal, you could also couple a walk in the park with having a picnic as a cute and relaxing way to meet up and enjoy each others company. Another food-related idea would be to make a meal together if you both enjoy cooking as you can work together on something and means you don't have the nervousness of meeting in the middle of a restaurant with lots of other people around. You could also watch a film or TV show together or play video or board games depending on what you are both into. Going to watch the sunset and stargazing could be something romantic you went to do either as an activity on its own or one that you do to finish off a date. It would be relaxing and allow you to chat about things without anything else interfering. Sharing an interest in reading can be something to bond over and doing a book club between the two of you should give you plenty to chat about while discussing a book you are both reading. This has different options for talking about the book as it could be done virtually on a video call/phonecall, at a cafe or similar, or meeting at each other's place.

Other options that can be date opportunities include bowling, art classes, or bird watching depending on what type of activity you are able to do and have an interest in. When you have a disability or chronic illness, dating can become a little more complicated and can often mean that you can't travel as far to meet people for a date. There is a big range of disabilities that affect people in different ways so finding a date that is more tailored to your circumstances is important. Single Disabled is an online dating service designed to help those with a disability find a date local to them, and they have different options such as deaf dating and amputee dating on their website to help those looking for something more specific to find someone that matches what they would like. 

This is a sponsored post

Read more

Passing My Blue Badge Assessment

I recently was approved for a Blue Badge for disabled parking and I thought I'd write a little post about what the assessment was like. In the UK you may be able to get a Blue Badge for parking if you have mobility issues to park close to your destination, and depending on the place this may give you free parking too. This can be given to the disabled person for them to use for parking or someone else who is driving them, and in my case, it's for me to use when someone else takes me places as I cannot drive due to medical conditions.

In January 2022 I finally applied for a Blue Badge and paid the £10 fee. There have been delays with the entire process but the website said 4-6 weeks before I'd be told what was happening next. After 12 weeks I was told on the phone that one month earlier it was written on my file that I needed an assessment and that they would chase it up so a letter would come out. I didn't get a letter until June, for a July assessment. So it took 6 months in the end. I am not eligible for automatic approval of a Blue Badge as I have invisible illnesses that can vary person-to-person, day-to-day. If you do get Personal Independence Payments for mobility you should be approved for a Blue Badge.

I was assessed by a Physiotherapist under Liverpool City Council and I felt at ease as soon as I got there. We parked in the allocated parking area for Blue Badge assessments and I used my wheelchair to get into the temporary building they have attached. We had a quick chat as he already knew what Ehlers-Danlos Syndrome, Postural Tachycardia Syndrome and Fibromyalgia were and how they varied. I had already seen online what was useful to bring ahead so the Physio took the plastic wallet that I had brought. This contained an up-to-date prescription, my letter for the assessment and a letter from my GP. My GP had already written a letter that I submitted along with my application but after a later telephone appointment she felt like it would be beneficial to have a more recent one, outlining my different mobility needs and that I am completely dependent on others to get out and about. I don't think I have been out on my own since 2015 for reference.

The Physio told me that we would do a quick walking assessment out in the car park and I was to walk from one side of the small car park to the other and he would walk with me and chat. He asked my partner to walk behind us while pushing the wheelchair in case I needed to stop or rest. He had a stopwatch open on his phone and I slowly got up and used my walking stick to balance myself. I went down the ramp slowly, and he advised me to use the railing and my stick so I had the most balance. He asked me questions (nicely) as I was going down the short ramp very slowly. Once I had reached the bottom I swapped my walking stick into my other hand and immediately lost balance, and my right hand now free began to shake, like a tremor movement. I was more unstable walking and didn't really get that far before he stopped the clock and said I could get back into my wheelchair and we would go back into the room to chat.

Given that I didn't make it to the first wall I am assuming he stopped due to taking a long time and my walking being unstable. At the start, he said that there was a second stage and that we would do it after the walking assessment but he didn't mention it once we got back into the room. He had already scanned in my GP letter and I was advised that I look into various avenues to help me walk a bit better. He didn't undermine me once or imply that I could be fixed. He recommended private Physiotherapy or Hydrotherapy but this isn't an option for me, unfortunately. He said a rollator may be a good option to build me up to walking a bit more where I can take a break and I agreed. Overall he was lovely and said that he would write up his side of things and that it could be a week or two until I heard back.

We went back to the car and I was feeling positive but sometimes you have appointments where you have a good feeling afterwards but then you get a letter that ends up feeling completely negative. Anyway, before we even returned home which is about 15-20 minutes away, I had an email. It was from Blue Badge Digital Service with the title "Blue Badge Ordered". I was stunned. 10 minutes after we left I had been approved already? After speaking with some of my partner's close family we came to the consensus that the Physio said 1-2 weeks as that's what he says to everyone and had to fill in his side before I would definitely get approved. I clicked on the email and it said that the Blue Badge was ordered that day and it would take up to 10 working days for it to be delivered. I am writing this 5 working days out from the email so it could be next week before I receive it, but that is okay. The badge will expire in 2025, and I am so happy. I'm sure it was only 2019 before people with hidden disabilities could actually apply for a Blue Badge and with the pandemic, there have been a lot of delays. 

The main thing I will end up using the Blue Badge for is hospital appointments, to be honest, and it will help a lot with being able to find a quick space that's close to the entrances. It was always about the closer parking rather than the potential for free parking for me as when I am able to walk a bit, it will help me stay up for longer. It will help when travelling to meet up with my partner's family too when we meet up halfway. I'm just really thankful right now. Thankful to the lovely Physio who I think I struck gold with. Thankful that hidden disabilities are just beginning to get recognition from those in power. Thankful that my life will now be easier, as will my partner's as he has to assemble my chair every time I leave the car. I hope this helps anyone who has an assessment coming up.

Read more