Claiming my disabled identity

For Disability Pride Month I wanted to write about how I came to identify as disabled…

When I became chronically ill in 2012 I didn’t instantly see myself as “disabled”, I didn’t even initially see myself as chronically ill. I think this was maybe because at the time I initially hoped that my health situation would be temporary and I’d soon get well and regain my old life back, but over time as it sunk it that I was in it for the long haul I began to identify myself as “chronically ill”.

As the months and years went by on the word disability and disabled crept into my life more. For example I needed to use disabled toilets, I had a disability parking badge, I received disability benefits and and among other examples I sometimes had to refer to myself as disabled instead of chronically ill as it was more understandable to able-bodied people in certain situations. My health in public also became more public as I had to start using mobility aids too, from a walking stick to crutches to now an a wheelchair but I still sometimes wear a Sunflower Lanyard to highlight that I have invisible disabilities too beyond my access needs for my wheelchair. 

As time went on I also began to be more ‘dis-abled’ too - by the limits put upon me by my illnesses such as bad symptom days, by the barriers in society such as lack of accessibility in a building or by ableist attitudes and lots more things.

I slowly began to identify with the idea that maybe as well as being chronically ill I could also disabled too. More and more I felt more comfortable with the idea of being disabled and confident to present myself as a disabled person and being part of the disabled community. I didn’t know what the qualifications were to meet the criteria to be disabled but I felt within me that yes I was disabled too.

Under the UK Equality Act 2010 you are disabled “If you have a physical or mental impairment that has a ‘substantial’ and ’long-term’ negative effect on your ability to do normal daily activities.”

With the above two definitions yep I definitely do meet the definition of disability, but even if you do meet the criteria and would rather not identify as disabled that’s completely fine. Be who you feel comfortable being!

I now embrace being disabled and I’m happy to identify myself as disabled. feel proud to be part of the disabled community and I use my lived experience to help raise awareness: I have this blog, and also the opportunities I’ve done with Scope various M.E. charities plus some other random things.

Finding your identity isn’t easy; it was a bit of a grieving process when I accepted I was disabled as it felt almost a permanency to my chronic health conditions, like they were here to stay and this is who I am now. It was also joining a world of access issues especially now I’m a wheelchair user whenever I go out and the nightmare that can be and the exclusion so many people like myself and other disabled people face because the world isn’t designed for us especially when there are places that could so easily be made accessible if the venue wanted to. Or access issues with transport: taxis, buses, trains, planes even ambulances (yep in the UK a lot of NHS emergency ambulances don’t take wheelchairs on board!) Then there’s issues with work and getting assistance with work, disabled children getting the support they need in schools, lack of access in healthcare, the whole challenge with benefits and the stigma that some with that plus the paperwork and assessments, lack of disability representation and misrepresentation, ableism and so so so much more.

Disabled people are the largest minority any yet we are still fighting for equality and equity even in the most privileged of countries. 

It’s nice to feel part of something, especially during Disability Pride Month seeing different disabled people coming together to celebrate their disabled identity and share our pride in having disabilities of all forms breaking down stigma and showing what needs to change in society to make it a better place for disabled people.

Hopefully the more we celebrate Disability Pride Month the more attention it will get to everyone.

The Disability Pride Flag

This is the current Disability Pride flag. Within the flag each colour represents a different type of disability:

• Red = physical disabilities
• Yellow = neurodiverse (such as ASD aka Autism, ADHD, dyslexia, dyspraxia etc.)
• White = invisible or hidden disabilities as well as those who are undiagnosed 
• Blue = emotional and mental health disorders 
• Green = sensory disabilities (visual impairment, d/Deaf and Deafblind etc.)

The original flag:

The original flag was created in 2019 and had much more vivid colours and zig-zagged to represent the barriers disabled people face. However when viewed on digital screens it affected some people with photosensitivity and seizures and other visually triggered symptoms.

In response to this the flag was changed to the flag we have today; the lines were made diagonal and the colours were dulled. The red and the green were also separated to accommodate for those with red-green colour blindness.

It’s time to celebrate

When the clock stuck midnight it marked the start of July, for the disabled community this marks our Disability Pride month. 

A month to celebrate our disabled identity but unlike other pride months there won’t be merchandise, companies won’t change their logo to our flag - they probably don’t even know what our flag looks like. There won’t be any huge carnivals or parades in the streets with everyone disabled or able bodied joining in to celebrating disabled identity and achievements for disabled people. 

Even in the most privileged countries disabled people will still be struggling for equality, their rights, equality, dignity and equity. 

Posts on Disability Pride this month will probably only reach our own community the algorithms probably don’t think our posts worth a share to the world to boost our celebration or even an explanation as to why we even have a Disability Pride Month. 

I know this post won’t go far but at least you now know it’s the disabled communities time to celebrate this month.

My joints go out more than I do!

This is an EDS joke and I mean it quite literally. Having EDS (Ehlers-Danlos Syndrome) means that among other symptoms my joints easily sublux and dislocate. Even the slightest wrong move or hyperextention that wouldn’t be too disastrous to most people, for those like me with EDS can really be a bad move too much. We’re mostly used to just popping our joints back in which would make most people scream and cringe simultaneously but occasionally a trip to the ED is required if the dislocation is stubborn, severe, or there is damage. 

EDS is a hereditary condition that affects the connective tissue - basically the glue of the body so it affects the joints, organs, skin, ligaments - pretty much everything. There are 13 different types of EDS each have a different characteristics as well as a genetic marker apart from hypermobile EDS which researchers are still looking the genetic marker for. I had genetic testing as it was originally suspected that I may have vascular EDS but that came back negative so I was diagnosed with hypermobile EDS (hEDS) but I still have some features of vEDS.

Zebras represent the condition as EDS is classed as a rare illness. The reason behind the zebra is because doctors are taught “when you hear hoof beats think horses not zebras” meaning look for the most common cause first but of course like zebras rare things exist too.

Fact: did you know a group of zebras are called a dazzle!

It often takes those with the condition many years to get a diagnosis. Once I was diagnosed I could see all the signs of my EDS being there in my life way back to childhood when my hypermobility made me a great ballet dancer but I had to give up dancing because of my hyperlordosis (an acute inward curvature of the lower spine) which I now see was a sign of my EDS back them. As well as how all my complaints of joint pain were put down to just simple ‘growing pain’ and other little signs and symptoms of my EDS being there all along. I think now though however EDS is getting a little more recognition so hopefully my collective missed opportunities wouldn’t happen again today if I had seen at least one professional who knew about EDS.

My skin is alsomore fragile so I’m more susceptible to injury so I’m always covered in marks and bruises. Activity in terms of movements have to be done carefully due to the high risk of injury including causing a joint to sublux (partly dislocate) or dislocate. EDS also affects the organs; for me it’s left me in bladder failure so I have a surgically placed catheter, which has greatly improved my quality of life even though it is difficult having a catheter to manage. EDS also affects my heart and gastrointestinal system (which can develop into secondary conditions). Another co-morbidity/symptom of EDS is dysautonomia which can lead to developing conditions like POTS - Postural Orthostatic Tachycardia Syndrome (this is also linked to my M.E. too).

To brace or not to brace is the question. Braces can be useful but the joint can get reliant and lose ability if a brace is over used. Generally it’s what’s been prescribed. For me I generally wear my splints and braces post dislocation or if a joint is feeling a bit unstable and in need of support, especially my thumb so my most commonly worn brace is my CMC thumb brace. Some parts of the body are harder or impossible to brace; you can get tape but it’s something I’ve not tried. My shoulders are the worst for this as they frequently dislocate/sublux but you can’t brace a shoulder and wearing a sling isn’t practical.

Living with EDS can be really difficult, and tricky. It takes careful management to pace your day to help reduce fatigue and pain. Aids/gadgets help to make life easier. According to my best friend I’m the gadget queen! I find aids so helpful from hands free can openers, adapted knives and scissors, perching stool, PopSockets and phone holders to body pillows (and everything in between) which all help to reduce dislocations/subluxations, make things easier to handle or reduce fatigue, reduce aches and more. I also find other equipment helps me too like my profiling bed, and because my EDS makes me more susceptible to pressure sores I have an airflow mattress; I also have a bath lift. Learning to pace is important too. I also find staying mobile helps even if it is difficult but at the same time accepting and embracing the use of mobility aids I use both crutches or a wheelchair - these help me immensely; I can only manage short distances and weight bearing with my EDS causes me a lot of pain especially in my hips so mobility aids help a lot.

Pain is a big aspect of having EDS. The pain covers your whole body; you get the muscular-skeletal pain but then I also have my bladder pain and my gastrointestinal pain too. The pain can feel pretty relentless; there are no days off from it. Some days are better than others but it’s always there. Meds and other things help, I’ve tried lots of things, some things help better than others. Mindfulness, heat, distraction, movement, massage, TENS machines/pens. I also find that my symptoms like my pain have a domino effect upon my other illnesses and they bounce off one another. Like if my hip pain is bad my M.E. leg pain might flare up. Pain relief medication only does so much too; like in the name it only gives you relief and takes the edge off the pain but it doesn’t take it away it just makes the pain just about tolerable and manageable so I can just about function and have some sort of quality of life.

I wish my EDS had been pick up sooner when I was a child. It’s slowly getting more recognition but more is needed. It often depends upon where you live, locally very few professional's here know much about EDS but in London where my care is so much more is known about the condition. Hopefully as more research is done more is understood about EDS and therefore treatments and the diagnosing of EDS will improve.

It’s okay not to feel okay

Mental health is a topic I’ve recently realised I need to write more about. If I feel okay writing about physical health then why shouldn’t I feel okay writing about mental health. (Maybe it’s because mental health holds more stigma?) Our mental wellbeing is just as important to see to as our physical wellbeing. The same goes for medication: medication for or bodies and for our minds - they’re both just as important to take to be well and to not to feel ashamed of taking or admitting that we take.

Recently I’ve been struggling more with my mental health, to the point where I’ve needed help to manage things to be safe and well - Again there’s there shouldn’t be any shame in admitting that we’re getting support for our mental health; we freely talk about seeing a doctor or nurse or physiotherapist so it should be okay to say that we’re seeing a therapist or psychiatrist or community mental health nurse. 

Anyway, as well as the professionals supporting me my Dad and best friend have been amazing throughout this blip that I’ve been going through and I can’t thank everyone for their support. I’ve also got back in touch with my old therapist and I’m seeing her again which means a lot and it will be good to just have a space to simply be and just let out.

This blip just came on though a mixture of social stressors and my physical health being a bit worse than usual. I do find that the my physical and mental health impact upon one other so when I’m having a bad day physically my mood gets lower. On top of that when I haven’t slept well that affects me both physically and emotionally too, and also when I’m not well physically and especially emotionally I don’t sleep well making things worse. 

 I’ve struggled with my mental health most of my life but for quite a while now I’ve been managing really well and I’ve not needed much support apart from a recent medication increase to help with my anxiety (I’d been waiting for the appointment for nearly a year) I’d also had a couple of sessions with my therapist again in the new year because I was struggling to cope due to anxiety but a few sessions was all I needed compared to the year and half of therapy I’d had the previous time I’d had therapy with the same therapist. It’s good to know that she’s [the therapist] always there for a ‘top-up’ of therapy and it’s always with the same therapist plus the last time and this time when I’ve needed a top-up I’ve gotten a session within a week - the perks of private therapy. It does cost me but it’s discounted as I’m on PIP but it is a medical expense just like a physical health expense but I get what I need which I wouldn’t get with mental health services (MHS) locally plus my sessions aren’t time limited and I get the type of therapy that suits me which is creative therapy which again MHS all don’t offer.

Whilst I’ve been going through this mental health blip I’ve been doing a lot of diamond art which I’ve found helpful to do. My concentration hasn’t been great and sometimes I struggle to distract myself and just listening or watching something wasn’t enough so when I called for support someone suggested doing colouring or diamond art with the television or my audiobook/podcast on in the background. I found her suggestion really helpful initially I did some colouring and ordered a diamond art kit and now I’m on my third kit! I’ve found mini projects easier as they seem more doable compared to a giant picture; I now need to find what to do with all the key rings and bookmarks I’ve made! - I’ve just bought some setting glue so I can fix down the gems and I’m thinking of selling them and putting the sale towards my fundraising? I’ve gifted some of the things I’ve made to friends and a bookmark to my Dad for Father’s Day.

I find engaging my senses helpful for grounding me too. So I’ve had my aromatherapy diffuser on, my Mathmos protector on (it projects like a lava lamp onto my ceiling - I’d love a galaxy protector) and I used to use lollies but I’ve discovered vegan fruit pastels. I also have my fidget ring that I wear or I’ll have a tangle toy. I have other things in my self-care box too like a calm jar, colouring bits, a micro Lego block type kit to built and other things - most of my self-care box is based upon the contents Megan put in my Recovery Shoebox* and my self-care box is the one Megan made for me. My therapist and I also made a self-care jar with little self-care notes in there to remind me of things to do or things that make me smile and feel positive.

Trigger Warning:

*The Recovery Shoe-box Project was started by Megan who has now sadly passed away by suicide. The project was personal to Megan as she struggled with her own mental health but she helped so many people through the project. In her memory Megan's friends and family continue the project to reach out to more people with mental illnesses to help them with their recovery.

Personally recovery for me is learning to live with my mental illnesses. I rather them not be there but depression and anxiety will always be there but it’s about me learning to be the one in charge, that’s what recovery looks like to me and inevitably I’ll have good and bad days and blips and wobbles but that’s okay. It’s okay to not be okay all of the time.

Product review: Fidget rings

As someone who deals with anxiety I really love my fidget rings. I prefer the design I’m wearing in the photo personally but there are other designs of fidget rings out there as well as fidget necklaces. 

What I love about fidget rings is that they’re a lot more discreet to use compared to other fidget items I’ve used in the past such as tangle toys; they’re also a bit more ‘grown up’ compared to fidget toys too. I can easily fidget with my ring and you’d hardly notice what I’m doing. Fiddling with my ring really does help as I find it helps to keep my hands occupied when I’m anxious and with my OCD I find it helps calm my compulsions which get worse when I’m anxious.

You can get many designs of fidget rings, I have this daisy one and another silver rainbow one and a gold one so I can pair them with my outfit of the day. The main places I’ve bought fidget rings from are Etsy and Calm Collective - If you buy from Calm Collective a portion of their sales goes towards supporting UK mental health charities too so good for you and good for the charities.

As well as fidget rings being good for anxiety disorders, they can help with other conditions such as ASD and ADHD as well as stopping habits like nail picking and biting.

I’d highly recommend fidget rings; if you’re looking around to buy them you can also search for anxiety rings as another name for them. They help in so many ways and there are so many different designs and styles out there including necklaces like I mentioned and you can buy them in many different sizes including some styles and sizes for men. They are hugely beneficial and look lovely at the same time.

Book review: ‘Time After Time’ by Chris Atkinson

Rating: ★★★★★ out of 5!

I thoroughly enjoyed this book. It followed on from Chris’ first book ‘A Bit of a Stretch’ where he documented and wrote about his time in prison serving a sentence for tax.

In Time After Time Chris gives an inside look into why people reoffend and go back into prison. From issues such as mental illness, lack of support following release from prison, addiction, needing money so they return to crime as a means to make money, the lack of a person’s education or employability, homelessness, enjoying being in prison and other reasons. 

Chris gives a detailed look into each of these issues by each chapter following one person’s own story of reoffending and why. Chris also asks why the person chooses to reoffend and also asks the individual what they think could stop them from reoffending.

Following on from this last point Chris explores the failures in the criminal justice system to stop reoffending. Such as poor relationships with parole officers or multiple changes in parole officers and issues with housing following release from prison. Like one person featured in the book what released from prison and one of the terms of his release was not to mix with other criminals yet he was housed in a bail hostel full of other criminals!

In the book Chris also speaks with people to see what changes could be made to reduce reoffending and what other countries are doing within their own criminal justice system and briefly brings in statistics of reoffending in the UK compared with other countries. 

The reason why I gave this book a 5 star rating was I loved the narration done by Chris himself. The book is very lighthearted and funny in many places in the manner that Chris goes about to investigate for this book and the people he interviews for the book too. I enjoyed the fact that it was an insider’s perspective on reoffending and included those at the heart of the matter. It was an extremely interesting and insightful book I learnt a lot as well as laughed at Chris’ and the people he interviews antics throughout the book. I’d highly recommend listening to it for the narration.

What are some of my extra costs…

Living with disabilities comes at a higher cost for many aspects of my life. For nearly everything I do I need to purchase a piece of equipment to help me do the task and just in general my everyday costs are higher.

Here are some examples of just some of my extra costs:

• Having the heating on when it’s cold - making my gas bill higher 
• Turning on cooling fans when the weather is warm - making my electric bill higher 

Because of my automatic problems I can’t manage my own body temperature as well as the colder/warmer weather even when milder for most people it makes my symptoms significantly worse so for a lot of the year round I’m either needing the heating on or having to use cooling fans

• Profiling bed and hybrid airflow mattress - additional costs on my electric meter
• Charging my bath lift 24/7 - more money on my electric meter 
• CareLink emergency intercom that’s constantly plugged in - more money on the electric meter
• Higher food bills due to multiple allergies as ‘free from’ food doesn’t come cheap

Some of my other extra costs:

• Crutches - over £100 to buy a new pair
• Over bed table - £200
• Non-spill cup holder - £14
• Lidded cups - various prices
• Straws - £4
• SafeSip non-spill lids - £8 each
• Straw holders - £5
• Adapted scissors - £24
• Hydrate water bottle system - £40
• Flexi iPad mount for my bed - £90
• BundleBean wheelchair cosy - £50
• Pickepacke bag for my wheelchair - £30
• FFORA handbag for my wheelchair- £68
• FFORA wheelchair cup holder - £20
• Medication carousel - £130
• Pill popper - £4
• Additional medication - ££
• Pulse oximeter - £46
• Blood pressure monitor - £36
• Communication cards - £2 each
• Medical History Passport - £30+
• Wash wipes - £22 for 60 wipes, I use these as an alternative to when I can’t bathe
• Hands free can opener - £24 (£20 more expensive than a manual can opener)
• Adapted cutlery set - £33 (for just one knife, fork and spoon)
• Adapted kitchen knife’s - £30
• Induction hob oven - £689 (the safest option)
• Magnetic phone charger - £45 (easier than trying to connect a cable to my phone)
• PopSocket phone holder - £27
• Varies app subscriptions to help me mange my health - ££
• Book ‘Severe M.E.: A Guide to Living’ - £9
• Book and audiobook: How to do life with a chronic illness’ - £22
• Pacing management pack - £25
• Noise cancelling earplugs - £20-£30
• Neck support cushion - £11
• Body pillow - £40
• Blue Badge renewal - £10
• Anxiety fidget ring - £20
• Catheter valve and tubie pad per one set - £12
• Cleaner - £25 a fortnight 
• Massage therapy - £48 every 2/3 weeks 
• Heat pad - £30
• Various braces/splints for my EDS - ££/£££
• Two sets of adaptive makeup brushes - £80
• Paying my care contribution each month (yes social care doesn’t come free)
• Paying my PA’s expenses

* some of these items did come with VAT relief

These are just some of the many aids and pieces of equipment and disability products that are daily essentials for me. Some products I just need buy once, other products I have to purchase repeatedly and replace as they get used and eventually wear out and break or they need updating or upgrading. Some of these products I also have to buy additional parts for, like Velcro patches for my Flexzi or and attachment system to go with my FFORA bag and cup holder (I also have another cup holder for my wheelchair). Also, don’t forget the batteries, or the electricity some of my gadgets require to run. There are also some items that I have to buy several of such as lidded cups, straws, non-spill cup holders, communication cards and many more items.

The item listed are all essential to help me day-to-day and as you can see life with disabilities comes at a higher cost, this is known as the ‘Disability Price Tag’.

The disability charity SCOPE has found that one average households with at least one disabled adult or child face extra costs of £975 a month so as to have to same standard of living as a non disabled household* - this figure is higher than what is given for highest rates in Personal Independence Payments (PIP) so some households are spending more than what they are receiving in PIP to help them cover their extra costs. This can push some disabled people or families into unnecessary debt. SCOPE is proposing a Social Tariff to give those eligible £12 a week to help them with the extra costs they face pulling some disabled people and families out of poverty. 

* SCOPE Disability Price Tag 2023

How M.E. has changed my life

Article written for the M.E. Association

M.E. has changed my life both positively and negatively. Don’t get me wrong M.E. is a difficult illness (to put it simply) in so many ways and it has literally turned the plans I had for my life upside down and thrown them away. However and this might sound corny but over the past 11, nearly 12 years it’s been a rollercoaster of a journey and I’ve learnt a lot along the way both about myself and about living a life with a chronic illness/disability and how that has changed me and my life.

Before M.E. I had my whole career planned out but getting ill with M.E. changed those plans and I’m still trying to figure things out and I’m still unsure what I want to do with my life now career wise because of all the barriers I face because of my disability. One way M.E. has changed my life is in the way that it’s given me a voice to share my story and experiences to raise awareness. I’ve worked with M.E. and disability charities doing a variety of opportunities that I otherwise wouldn’t have done if I hadn’t of gotten ill with M.E. I also wouldn’t have started this blog or my YouTube channel too if I hadn’t of gotten ill either. As well as that I wouldn’t have started my fundraising project selling my handmade cards either.

Another thing M.E. has done is make me realise and work out who my true friends are as well as finding true friends. This has both been difficult and deeply painful but also wonderful making true connections when I realise who are the people that matter the most.

I’ve also come to realise that the chronic illness community isn’t for me. At first when I got ill I was really in with the chronic illness community and at the time in some ways it helped me adjust as my life changed into one with a chronic illness. However personally over time I started to see the community a different way and I found it a negative and competitive space at times. Yes I’ve met friends through the community but photos of a hand holding pills, a bag of saline hanging on an IV pole and posts where people were in competition to be ‘the most ill’ wasn't for me. Personally I prefer to raise awareness in a more positive way and in a way that encompasses my whole life; not just the medical me. However I do know that some people find comfort and their place in the chronic illness community so I respect that.

M.E. has also changed me to become a stronger person by challenging me. To handle the bad days, the pain, countless symptoms, extreme fatigue and everything else it’s thrown at me. M.E. has also taught me my limits. There’s this quote that I love:

“There are things that are possible; things that are impossible, but otherwise, I think that within my restrictions anything is possible.”

Getting ill has taken a lot away from me in lots of different ways and aspects but I try to focus now on what I can do each day and within what I can do there is still a lot and I’m thankful for that. I’ve also learnt gratitude since becoming ill and that’s changed me too. I’m grateful more for the small things, like a letter from a friend, my PA making me pancakes, going out to the postbox, time in my garden on my swing seat or enjoying a good book.

My M.E. has also changed my life in other ways too. I’ve grown in confidence; I’ve had to but it’s not always been easy. It’s been difficult at times to accept the deterioration with my health and thus the need for things like mobility aids and care but I’m now a happy ambulatory wheelchair user (with my jazzed up wheelchair) as well as having pretty crutches (who says mobility aids can’t be pretty?!) and care is just something I’ve just had to accept I need. I’m also more confident now to speak up for myself when needed, such as speaking up for my needs.

The ways M.E. has changed my life negatively is the deterioration in my illness over the years which has been hard. I go through big crashes and find a ‘new normal’ then other times I crash and return but there’s always the worry about crashing and having to get used to a ‘new normal’ in which my M.E. has slightly or significantly worsened each time. Other ways M.E. has changed my life is the increase in isolation because I’m not able to be in education or work and all my friends live in other parts of the UK or overseas, I don’t have any local friends and I’m not in a position to meet new people locally either.

So yes M.E. has changed me a lot; I don’t think I’d be the person I am today if I hadn’t of gotten ill. Both in a physical sense in terms of now living with a disability and my life mapping out differently but also what I’ve learnt over the years. The things I learnt about myself and about life, to be more resilient, grateful and stronger etc. as well as to be my own advocate. To work within my limits and remember that within my limits the possibilities of what I can do are endless. There are days when I hate my M.E. (and I have a lot of them) life is challenging; the world isn’t perfect for disabled people and services for M.E. are few and far between as is the knowledge about the M.E. make having this illness difficult to say the least. But in the other ways M.E. has changed my life I’m thankful for all it’s given me, for all the opportunities I’ve done and I’m yet to do and to be and advocate for others with this illness.

Reflections on M.E. Awareness Day

Today I’ve been thinking about the millions of people missing around the world due to this illness, people like myself missing from education, from work and from society. Missing out on getting the degree and career they dreamed of or missing out from catching up with friends over coffee or a meal or holiday with their family and a million other things.

I think of the lack of funding M.E. receives which means lack of research which leads to the lack of effective treatments not yet found as well as understanding into this illness. There’s still so little that professionals understand about M.E. Even now people with M.E. aren’t getting the care they need because doctors and other professionals don’t understand. They see someone so ill with this illness that the can’t sit up, talk or eat and instead they think that the person is mentally ill instead of being ill with very severe M.E. So many people are facing injustice when it comes to our care.

Statistics from The M.E. Association have found that in nearly a third of patients have the most common waiting time for a diagnosis of M.E. which is between 2 and 5 years - I had to wait 4 years for my diagnosis 

Researchers at the University of Southampton have found that 1 in 3 people with severe/very severe M.E. have no access to local specialist services

Access to care shouldn’t be a postcode lottery. Where I live there’s no access to specialist care at all whatever level of M.E. you have. I also think greater access to social care is needed too. Diagnosis should also come sooner and GP’s should understand better on how to manage our care in the community along with community healthcare services: nurses, Occupational Therapists and physiotherapists as well as social workers to bring holistic care to patients. I also think that more professionals need to be aware of the different guidelines* to help them support people with M.E.

Today I’ve also been thinking about those that have lost their life to M.E.; whether they got too unwell or the illness got too unbearable for them. We need to remember and not forget these people. These people show the reality of M.E. and just how severe this illness can become; that M.E. is much more than ‘just feeling extra tired’.

But we won’t be forgotten. I’m determined to be a voice for people with M.E. and though I might be limited by my own experience with M.E. I will do all I can to help raise awareness, fundraise, blog and do opportunities with charities to let the millions be heard.

More about M.E. including my story, videos and links to other organisations

*Guidelines:

• M.E. NICE Guidelines 
• Social Worker guidelines - BASW
• How nurses can better support people with M.E.

A year in my home

Note: when I first posted this post I thought it was move in date but I’d got muddled up as I often do. I actually moved in on the 11th May not the 10th April!

A year ago today I will have been living on my own a whole year. It still feels surreal sometimes that this is my own home and I’m the only one that lives here. 

I’m also not quite sure how I’ve made it this far, I couldn’t have done it without my care team of PAs, carers and nurses and everyone else such as OTs and not forgetting my family especially my Dad. We all need a Dad, someone to do DIY for us or to sound off to or ask for Dad advice. Also on a supportive way my friends, even though they’ve not been here in person they’ve been there virtually on my phone. One friend in particular has really been a rock for me, just someone to talk to, vent to, share my day with and share funny animal videos with etc. we all just need people like that in our life and though she may not be here in person this friend has really kept me going too.

It hasn’t always been easy; it’s difficult living on my own especially on my bad days or on the odd days when my care hasn’t been there but I think I’ve done well and my Dad thinks so too. When I first moved out Dad thought I’d have a lot of ambulances coming out to me (I hate paramedics and hospitals) but I’ve actually only had two ambulances over the past year, one for a bad concussion which I got from falling during a seizure and another for and asthma attack and only the concussion landed me in the Emergency Department. Dad also thought that CareLink would be calling him a lot too to come and check on me but they have only called him once when I had my asthma attack so to my Dad I’m doing and coping much better than he expected.

Slowly this little bungalow is more becoming my home. When I first got the keys I did decorate it but over the past year I’ve changed more and more things to make this place mine. Dad’s renovating the back garden for me which I’m really excited about. I’ve linked in below a tour video of my home that I put up on my YouTube channel, since then there’s been several changes to my my home that I noticed when I watched back over the video like how my bathroom floor has been changed now so something much nicer, I now have a proper makeup mirror in my bedroom at my makeup desk (which has been reorganised) and I’ve added a yellow HomePod on a stand next to my toaster in the kitchen and also the top of my kallax unit in my bedroom has had a change around and a shelf has been put up above my craft desk and my letter rack has been moved to that shelf and I’ve finally changed the seat cover on my rocking poang chair too!

I still haven’t yet found my routine here. I more just go with the flow and try to listen to my body when it’s telling me it’s getting worn out. I had a strict routine when I lived with my Dad and stepmum but here I don’t really think I can have a strict routine as my evening care is always at different times and I have to wait the nurses to come at no fixed time some days etc. plus when I’m feeling up to it I have house jobs to do like tidying up or putting laundry on. These things do tire me out and it does make living on my own difficult. I try to delegate as many tasks as possible to my PAs and carers to save my limited energy levels and this does help and this is partly why they’re here to help me out and to enable my independence and to enable me to be able to live alone.

Despite the challenges and fatigue and everything else from living alone I love it! - “We can do what we want to again”: Moomintroll (The Conscientious Moomins) I love living by my own rules just simple things like being able to change my pjs as often as I want (as it’s me that has the full laundry basket), and being able to choose my own meals, or just being able to do my own thing and do what I want when I want (within reason and when my body permits me to do so as well) and having my own space too. I’m a person that likes solitude and quiet and my own space and being on my own so as much as I love my PAs and carers I do like my time alone (apart from when I’m not well and therefore I’m struggling without the additional support so then I am relieved to see my PAs/carers).

The layout of my little bungalow has also worked out perfectly for my needs. I’m only a few meters from anywhere and it actually works having the kitchen integrated in the front room as it’s less rooms and less walking for me. My housing association have also been great putting in adaptations like grab rails and a fire door and I’ve also got some extra things from my Occupational Therapist. All this means that I can live more independently (especially when I’m on my own) and tasks are made a bit easier for me or things/places are more accessible for me. I didn’t really have much of that at my Dad’s, I didn’t have the grab rails and the stairs were really difficult for me so it’s great to now be on one level in a bungalow. You can’t have everything though, I don’t think there’s a thing as the perfect property; there’s always that one thing and for me the one downside to living here is the parking.

It feels good to now have my assured tenancy; it feels more permanent and solid and like I have a future here and I do see a future for me here and it feels amazing.

Tour my new home

I wrote an article for The Metro!

I’ve just completed my first opportunity as a Storyteller for the disability charity Scope. The opportunity was to write an article for The Metro. At the moment it’s just online but it may go into print in their newspaper but that’s not for definite just yet.

I was asked to write about my extra living costs due to my disability, especially higher utility bills because of medical equipment that needs powering 24/7 and higher grocery bills because I have multiple allergies on top of my every day expenses and how this affects me financially. I also got asked about to write about how the proposed changed to Personal Independence Payments (PIP) would affect me if they were to happen in light of recent announcement.

Read the article on The Metro here.