Carer’s Week - What my PA’s do for me

My Dad and my PA’s are my carers.

One of my PA’s on
‘Come to work in
    Your PJ’s day’

My PA’s (Personal Assistants), Alison and Emily are amazing and I feel blessed to have such amazing PA’s who I feel truly care for me and go above and beyond for me. I love PA care as I get to build up a good solid relationship with my PA’s and my care is consistent compared to my agency care. I also have more autonomy over my care. I can also do fun things like on this random day like ‘Marmalade Day’ on Come to work in your pyjamas day’ I let my PA come to work in her pyjamas.

I employ Alison and Emily via Direct Payments and I use and agency to help me do the admin and legal side of the employment as well as help me find new PA’s as I’m still looking to complete my team of PA’s.

My Dad also cares for me like for example if a PA is off he will come round after work to make my tea, do the washing up and do other jobs for me that I struggle to do. Dad also does my gardening for me. Dad also helps with my social wellbeing and during the school holidays we’ll usually go to a garden centre together as he knows I find it difficult to get out so we’ll have a coffee and usually get some things for my garden. My Dad is also on call all the time and has even come out in the middle of the night to me like when I had someone break into my garden. I also find it good to talk to my Dad when I’m struggling with my mental health.

Going through the day here are some of the things my PA’s do to support me to help me personally but also manage to enable me to live on my own:

• Meal preparation and also making drinks
• Preparing medication and ensuring I’ve taken all my medication
• Dealing with my catheter
• Preparing my bath
• Getting me into the bath - lifting my legs into the bath and operating my bath lift
• Helping me brush my teeth
• Helping me wash my face
• Washing me
• Shaving me
• Washing, brushing and styling my hair
• Helping me get out off the bath
• Helping me get dried
• Applying barrier creams
• Assessing my pressure areas to help prevent/treat pressure sores
• Helping me to get dressed both in the morning and at bedtime
• Transferring such as into my wheelchair or onto a chair
• Preparing catheter bags
• Making my bed
• Ensuring I’m wearing my CareLink
• Helping me remember things
• Supporting me in the community and accessing the community
• Driving me to places 
• Keeping me safe when I become unwell
• Getting my wheelchair and also sometimes my Batec in and out of the car 
• Taking me to medical appointments
• Supporting me at medical appointments 
• Helping me manage my anxiety
• Helping me with communication
• Doing laundry 
• Washing pots
• Food shopping
• Taking me out on Batec rides
• Meet my additional needs when I’m having a bad day 

This is just what I can think of off the top of my head now what Alison, Emily and my Dad do for me. I’m so grateful to have the support I do and to have the great relationship I have with my PA’s too.

I think more people need to consider a career as a PA and I always advocate for what a fantastic job it can be and how you’re supporting someone to live their life how they want to and you’re helping to enhance their quality of life too and the relationship you build up with your client is amazing too.

I also think that caregivers should receive more in Care’s Allowance.

Carer’s need more recognition for the role they play in disabled people’s lives.

Without Alison, Emily or my Dad I wouldn’t be where I am now. I wouldn’t still be living independently in my own home and I love having my own home. I feel cared for and supported and my PA’s enjoy coming to work and that makes me really happy knowing that.

Living with M.E and EDS - What my day looks like

I thought I’d share with you my daily routine and how having both M.E and Ehlers-Danlos affects every part of my day and how I try to manage my symptoms as well as what it’s like to live with disabilities and chronic illnesses; especially ones that limit my energy and ability to function.

I’ve literally been working on this post all month. Blogging is hard with limited energy and when you’re dealing with Post-Exertion Malaise from other things in life but I enjoy it and I love seeing how many people my blog reaches and I hope it helps readers; makes them feel that they’re not alone and hopefully through sharing my lived experience I can share ways on how live with a disability or chronic illness and it will help other people out there. Though blogging is difficult for me at times and I get frustrated that I struggle to not blog as much as I’d like to this is what keeps me blogging. I would have liked to have blogged more this M.E and EDS Awareness Month this has been the main post I’ve been working on. Maybe next year I’ll be more organised and plan ahead.

My day…

Waking up

My blue smart blind

I usually wake up feeling like I haven’t slept. I also have difficulties with sleep so a lack of sleep often makes my symptoms a lot worse during the day which then makes my sleep at night worse. It’s like a never ending cycle but this isn’t unusual if you have M.E.

I find waking up at the same time, 9am, helps. I also have time to wake up and get functioning ready for when my PA arrives. If I could sleep in and didn’t have PA’s each day I probably would and would love to sleep more especially as I often sleep so badly.

I sleep on a profiling bed with a hybrid airflow mattress. My profiling bed allows me to sit myself up, get comfortable independently, raise the hight of the bed for care tasks with my PAs and nurses as well as tilt the bed to manage my POTS. My mattress helps to prevent pressure sores especially as I spend such a long time in bed. I’m also a high risk for pressure sores be cause my skin is more fragile because of my EDS and because I have reduced mobility. 

I also have a body pillow which I find supports my body which helps with my EDS joint instability and also when I’m quite tired and my muscles are weak.

Sitting up slowly

Once I’m awake I lay and allow myself to wake up. My smart blind automatically rises a little at 9.03am and a little more at 9.15am to allow me to adjust to some daylight (my blinds behind my smart blinds are still closed), I just find this helps with my light sensitivity. Usually just my smart blind stays up during the day so my bedroom is kept dim. Sometimes I do open my other blinds if I can tolerate the light. I wear dark glasses as well.

At 9.15am I take my morning medication. I usually read or watch a bit of YouTube until my PA arrives at 9.30am.

I sit myself up in little increments which I find is better and helps my orthotic intolerance and POTS. - With both M.E and EDS it’s very common to have dysautonomia which is problems with the body’s automatic functions. Orthostatic intolerance and POTS: Postural Orthostatic Tachycardia Syndrome, are two conditions under the umbrella term of dysautonomia. Basically sitting and standing are difficult for my body to do and cause dizziness, low blood pressure, high heart rate and feeling faint and actually fainting (syncope). As a result of this I spend a lot of time laid in bed and I have to use my wheelchair.

My time with my PA’s

My PA’s Alison or Emily get here at 9.30am. They make my breakfast for me. Doing small tasks helps me as it helps save my energy for other things and for later in the day, it also helps to minimise the severity of my PEM (Post-Exertion Malaise) later in the day.

As an alternative to agency care I get Direct Payments allocated to me from adult social care to employ Alison and Emily to support and care for me. I’m allocated hours for a mixer of personal care, social support and to do my weekly food shopping.

Getting ready for the day

My bath lift

Usually I get a bath in the morning; because of my hypersensitivity with my M.E I can’t tolerate showers. I use a bath lift to get in and out of the bath and I have help to lift my legs in and out of the bath. On a bad day I’ll have a wash in bed.

I try and do as much for myself as possible. My PA prepares my toothbrush and I brush my teeth. I wash my own face I just have my PA wet my flannel mitt for me. My PA’s do wash me as this is something I struggle to do and I’m usually getting tired by this point. I do break the tasks down so after each task I’ll rest so I can be in the bath for some time. Towel drying is a joint task. I’ll get dressed on my bed which my PA help me with and I also have barrier creams put on me to prevent or treat pressure sores. 

If I’m having a bad day I might put on clean pyjamas and have a PJ day but as much as possible I try to wear ‘day clothes’ to help with my sleep. I’ve found maternity jeans a great tip for wheelchair users as well as for comfort laying in bed.

I often wear funky compression socks which I find helps with my circulation and blood pressure. Sometimes though I find the tightness can irritate my M.E’s hypersensitivity and the pain I get in my legs when my M.E flares-up.

I have to be careful when dressing and undressing because of my EDS as my joints are so unstable and cause easily sublux or dislocate.

I also have to deal with my SPC catheter. I have bladder failure because of my EDS as EDS can affect organs in the body; my EDS also affects my digestive system and heart. I like to choose a tubie pad set that will match my outfit of the day. I also like the wear bag covers as I feel more comfortable and confident with a bag cover and line cover especially if I have to go out. I’ve got some cute sets like yellow ducks, dinosaurs and floral designs.

Once I’m dressed I’ll transfer into my wheelchair and I’ll do a self-care skincare routine. I’ll also brush and style my hair. When Emily is working I’ll ask her if she can braid my hair. I find braids great as I love my hair braided and it keeps my hair out the way for a few days.

My PA’s will also ensure I’m wearing my CareLink watch which detects falls or I can press it should I need help in an emergency - like the time when someone came into my back garden at 3am or when I had a severe asthma attack.

I’ll also put on my CMC thumb braces on both hands. These are the only two braces that I wear all the time as I get a lot of pain there and I use my hands a lot. I’ll put other splints and braces on when needed such as post-dislocation or if a joint is being particularly painful or unstable, or to support it when doing a task like typing or writing.

After getting ready for the day 

Once I’m ready for the day my PA will make me a hot drink. I always drink drinks with a straws and hot drinks at a cooler temperature. Often I’ll drink out of a lightweight lidded cup too as I have weak wrists so holding and drinking out of a mug is often difficult for me. I find straws really helpful and now with the ‘straw ban’ I ensure one is always on me. Lidded cups and lower temperature drinks are also safer for me.

Usually my PA’s finish at 2pm during the week and 12pm on a weekend. On a Tuesday Alison does my weekly shop for me so she’ll finish early.

If I have a medical appointment I will ensure it’s within the window of my PA’s hours so they can take me. I also need someone with me at all times when I leave the house in case of emergencies or I start to become unwell or I get tired etc. At appointments my PA can also sometimes add in information on my behalf at appointments too which is really helpful especially as I get forgetful and brain fogged. They can also assist me like if I need to get undressed and into a hospital gown if I’m having a scan or just provide me with emotional support.

Sometimes if the weather is nice I like to go out for a ride with my Batec - my wheelchair power add-on. Getting out the house with my Batec massively helps my mental health as I spend so much time in my home. Sometimes I go around my estate or to the postbox but even if I just go up and down the road it’s nice to get out and get some fresh air.

We do other thing activities too like batch cooking homemade meals, baking and crafts. 

What I do during the day…

One of the first things I try to do after my PA leaves is do my daily bullet journal for the day. I’ll write my to do list and any reminders to myself as well as upcoming appointments etc. so I’m able to plan and pace my day. I traffic light each task on my to do list to help with activity management. My bullet journal is like my second more functioning brain and I’d be quite lost without it. I also use it to track my health, symptoms, self-care and sleep and other things like my spending and books I’ve read.

I have regular rest periods throughout the day where I’ll lay in bed and listen to an narrative soundscape or a mindfulness meditation. I find rest doesn’t restore my energy levels but it just puts a pause in my day and allows my mind and body to just stop especially before I hit the crash point. I find that if I don’t rest my energy levels will complete crash and my Post-Exertion Malaise will be a lot worse. I’ll also lay with a podcast or audiobook as restful activities.

My over bed table for activities

I try to set one ‘main activity’ each day, like today it was to type a bit of this blog post. Some activities I’ll do on my own others I’ll do with my PA depending on the activity and day as well as whether I’m having a good day or not. On bad days resting is more of a priority than doing an activity,

I have to spend most of my day in bed and I’ll know the signs for when my body is needing to lay down with my Orthostatic Intolerance. 

I do try to spend some time out of bed each day and that’s one reason why I love my new wheelchair as it allows me to be able to get around my home. Plus being seated in my wheelchair is much safer for me and it is more manageable for my OI and POTS. I try and sit in my front room for lunch and tea at least and spend a little time at my craft desk too just for 5-30 minutes if I can. It just gives me a change of scenery from my bed. In the summer when the weather is nice I’ll try to go out in my garden; I have a garden bed so I can lay down and enjoy being outside.

If getting to the bathroom is challenging I’ll attach a day bag to my catheter so that helps my M.E.

I’ll normally do a mixture of resting, laying and listening to my audiobook or a podcast, doing a activity if I’m able to and just general other stuff all mostly in bed until my PA comes back to work around 3.30/4pm.

If I have an appointment that day (not just medical appointments but dates in my diary for say Dad visiting) my day will be dedicated to resting, as will the day before and the days after as after I will experience PEM. I try to limit my appointments and space them out as much as possible to give myself time to recover.

Post-Exertion Malaise

PEM is a key symptom of M.E, fatigue also comes along with EDS as well. PEM is a flare-up of M.E symtoms as well as an experience of other symptoms following any form of physical, cognitive, emotional or social activity. PEM can com on hours or days after the activity and recovery can take days, weeks, months or even longer. Even the smallest things like talking can cause me to experience PEM. The hardest thing I find with PEM is I don’t know when it will really hit me, how bad it will be and how long it will take me to recover. 

I experience PEM daily and by mid afternoon around 2/3pm my body is struggling with PEM from my morning routine and any activity I’ve done that day like my ‘main activity’ is really affecting me.

I also experience PEM from other activities like appointments or spending time with my Dad. The PEM from bigger things like this they will crash me much more and my M.E symptoms can be much worse and the crash will last a lot longer and will take longer to recover from. I might struggle to feed myself,  be unable to drink out of a cup, unable to talk and move, my pain levels are high, I struggle to tolerate noise and light much more than normal. These are a few examples of just how severe M.E can be for me just from simply leaving the house to see a doctor.

My bedroom and bed space

My bed with accessories:
Giraffe hands free bottle
Flexzi stand
Body pillow

Most of my day is spent in bed at various degrees. Having a profiling bed is so helpful as I can independently lay myself down and get myself comfortable. My body pillow is very supportive both for my EDS joints and the weakness I have in my body because of my M.E especially when I’m tired or having a bad day.

I’ve developed a bit of a set up in my bed space. I have everything I need organised into my bedside draws. I also have a Flexzi stand for my iPad and kindle (which I also have a remote controlled page turner for which is great for reading laid down). I also have a handsfree water bottle or I can swap the bottle and be able to drink hot drinks handsfree - this is especially helpfully when I struggle to hold, lift or drink out of my lidded cups whether it be because my M.E has flared up or because my EDS is bad in my wrists and hands. I also have my over bed table which is great for putting things to hand on, or eating meals off or do activities in bed.

I keep my bedroom low-sensory. I usually have my blinds closed and my roller blind is voice controlled so I can close that if I need more darkness. It’s nice and quiet too but I often wear my noise cancelling headphones as well.

I find smart technology really helpful when living with severe M.E. I can voice control my heating, fan and lighting too; alternatively I can control everything on my Apple devices. I have soft lighting in my bedroom and I love fairy lights and I love my remote control mushroom lamp which I can set a colour I find I can tolerate and I can dim/brighten or use it as a sensory lamp.

Evening PA time

I’m usually quite tired by the time my PA gets to me around 3.30/4pm. I have a list of ‘bad day needs’ for when I’m having a bad day and I might not be that talkative when I’m tired and in pain. I find my EDS pain gets built-up during the day too.

In an evening my PA’s will help me get ready for bed. I’ll have a wash in bed which my PA’s do pretty much most of. I use a towel off foam wash from NilAqua that I highly recommend. More barrier cream to put on.

I’ll rest in bed while my PA makes my tea. I’ll eat my tea either in my from room or in bed depending on how I’m feeling.

My PA will do other jobs while I’m eating.

Before they leave they’ll ensure I have everything I need for the rest of the evening and night time.

Once my PA has left and my evenings

I usually go back to bed if I’m not already in bed once my PA has left. I’ll rest and listen to a soundscape a well as lay and listen to a podcast. I might also watch some television (I’m really into police body cam documentaries on YouTube at the moment). I don’t watch a huge amount of television as I find it quite sensory overwhelming. I’m also really enjoying colouring at the moment I’m a bit obsessed with my pens and colouring pages from Calm Over Chaos currently - I’ll colour and listen to a podcast for a bit as my evening activity if I have the energy. I have a very busy mind so I find resting really difficult - not helpful when you have M.E and you’re feeling exhausted. I find I can just about entertain myself with podcasts or my audiobook or reading my kindle. I try to do restful activities in an evening as my energy levels are low and I’m pretty exhausted and in pain. I find I need to distract myself from my pain and symtoms as well until I’m ready to sleep.

If I’m having a good evening I can get into m wheelchair and get myself a hot drink like a decaf coffee. I like flavoured decaf coffees. If I’m not having a good evening I’ll ask my PA to leave me a coffee in a thermal tumbler so I can still enjoy a coffee later in the evening.

Sleep

Sleep is really difficult for me. I have some evening inf where I accidentally fall asleeep while listening to a podcast and I’ll wake up in the morning with my glasses still on and my duvet still folded over unswept in. Then I get other nights where I just cannot sleep at all sometimes because I’m in pain other times it’s just  because my body refuses to fall asleep. Thankfully I do have an appointment with the sleep clinic next month so I’m really hoping them can help with my insomnia as I have insomnia a lot and when I have a lack of sleep my M.E is much worse the next day.

M.E and Me

Today is M.E Awareness Day

I got ill in 2014

After I got the flu

For years I was told over and over 

‘It’s just Post Viral Fatigue Syndrome,

With rest you’ll recover’

But I did not recover 

I felt frustrated 

I blamed myself 

I couldn’t work out why I couldn’t snap out

Of my overwhelming fatigue

And fog that clouded my brain

And why every step I took

Felt like I was being weighed down

I thought it was me

I thought I was doing something wrong to feel this way

I tried everything

Then in 2017

The 4th July to be exact 

I finally got a diagnosis 

I got told I had M.E

Myalgic Encephalomyelitis

Suddenly I could stop blaming myself 

I had a name

My symptoms were not my fault 

What I was feeling was real

But there was no cure

Not even a treatment 

No magic pill to make the M.E go away 

I must simply learn to live with my M.E

As the years went by

My M.E faded into Severe M.E

I am a statistic 

1 in 4

The 25%

One of the #MillionsMissing

I live in my bed most of the day

I get around in my wheelchair

Rare trips out to feel the fresh air on my face

My Batec is my happy place 

Where I feel free 

I try to have some normality 

Spend time at my craft desk

Or even do activities in bed

But for every action there is a reaction

And the M.E protests with

Post Exertion Malaise

Those three words

Mean such a lot

Sometimes the smallest thing

Will flare up my symptoms 

It’s like having the flu

And the worst hangover 

And not having sleep for a week 

All rolled into one

That’s how I feel all the time 

What did I do to feel so bad

Was doing that really so bad

For the M.E to over react 

For my M.E to leave me

Unable to sit; to talk; to move

Only able to lay there in the dark

With only my audiobook on the lowest volume for company

The pain in my body

In my legs especially

To high for the pain score to register 

How long will this crash last 

Days, weeks, months

Or even years?

I’ve only ever stabilised and dipped 

I hold onto hope each time I dip

That I will recover back to how I was before 

There is no end in sight 

Help is hard to come by 

Doctors don’t understand M.E

Services are a postcode lottery

Care was a fight

I only got care

When I became so unwell

I cannot care for myself that much

I rely upon someone else 

For all tasks of daily living

Medication only offering me some relief 

Trying every option

My mental health affected

By my chronic illness 

Quality of life 

Sometimes I wonder what that is

I’m only 32

When will this M.E nightmare end

DecodeME was promising 

Changes in my DNA

Markers in my immune system to explain the onset

And in my nervous system to explain my pain

Proof that it’s not all in my head

Hopefully they’ll develop a breakthrough 

Some sort of treatment 

Each day is a struggle 

A fight with my multitude of symptoms 

Treading on eggshells 

Trying not to overdo it

Trying not to crash 

Grieving for me pre-M.E life

For now until a cure is found 

It is just M.E and me

FND and mobility aids

April is Functional Neurological Disorder, FND, Awareness Month. FND is a problem with the brain and nervous system’s inability to properly send and receive messages around the body which can result in a wide range of symptoms.

One symptom of FND is altered gait and other mobility problems. This is a symptom I have. When I walk my brain struggles to communicate with my legs so my gait is all over the place and I’m very off-balance when I walk. I also get reduced sensation in my legs which also makes walking difficult.

I’m an ambulatory wheelchair user. This means that I can walk a little with my crutches but I also need to use my wheelchair to help me get around. In the UK around a third of wheelchair users are ambulatory. At home I sometimes use my crutches, but most of the time I now need my wheelchair to get around. But when I go out I always use my wheelchair as I struggle walk at all when I go out. I’m also safer in my wheelchair as I can’t fall and it’s also safer should I have a non-epileptic seizure which is also another aspect of my FND. My symptoms are also better managed when I’m sat down.

Using a mobility aid doesn’t mean you’re “giving up”. Mobility aids are here to benefit us and aid and support us. They’re not a sign of weakness or failure they’re a sign of strength and wanting to live your life to the fullest as possible.

The decision to start using a mobility aid might be something you’ve chosen yourself, or it might come from a healthcare professional. It can be a big step to start using a mobility aid as you might feel that it’s a sign that you’re now more unwell. This might be the case for some people but not for everyone. Using a mobility aid can actually improve your life. It will give you more freedom and independence and quality of life. They can also help you to better manage your symptoms like feel less fatigued, reduced pain, better management of heart rate, more stability, save energy and more as well as offer safety.

Mobility aids don’t just help us physically, they can help us emotionally too and give us more confidence. We don’t have to worry about things like falling, passing out, becoming tachycardic, being off-balance, not being safe, having no place to sit down to rest and so many more reasons.

Some people always use a mobility aid and others just use it when needed like on bad days or when going out. Others have a variety of mobility aids and use different aids on different days depending on their symptoms.

When my FND started, before I was diagnosed, so I didn’t know what was wrong with me but I was struggling with my mobility I used to carry around a fold-up walking stick and I’d use it when needed and then I used it all the time. By the time I was diagnosed my physiotherapist had then said I should start using crutches. As time went on and my mobility and overall health worsened not just my FND but my other conditions I asked my neurologist if a wheelchair would be of use to me. I wanted his option as I didn’t want to decondition my mobility. He absolutely thought that a wheelchair would benefit me and he knew how determined I was to not decondition and he said that he knew that I’d know when I would and wouldn’t need to use my wheelchair.

Wheelchair Services provided me with a wheelchair and it really did benefit me. I was able to go out more instead of struggling walking with my crutches; getting tired and then completely crashing and making myself more unwell. As the years went on and my health continued to decline I needed to use my wheelchair more often and my NHS wheelchair wasn’t meeting my needs. I now have an ultra-lightweight active wheelchair, my GTM Mustang, which I love because it meets my needs and it’s given me back my freedom and independence as well as improving my quality of life. 

Another mobility aid I have, which has to be one of the best things I’ve ever bought is my Batec Mini 2. It’s a power add-on for my wheelchair so I can easy go zooming around.

My Batec has really helped to improve my mental wellbeing. Just being able to get outside and ride around and get some fresh air or ride to the post my penpal mail or to the shop. I’m in my little happy place when I’m riding with my headphones on and saying hello to dogs out on their walk.

When I first started using a walking stick I felt nervous using it and being seen using it as someone in their early 20’s as I always associated walking sticks with older people; not someone young like me. I used to think about what people thought of me using it when I got on a bus and then went and sat on the reserved seating. I never really saw people my age using mobility aids.

That’s one positive that has come out of the chronic illness community; seeing other young people my age using mobility aids. It really helped me to not feel isolated and to realise you can need a mobility aid at any age and it helped me to accept using mobility aids. I also saw to variety of what jazzy mobility aids that were out there too, or the various ways you could decorate your mobility aid.

Jazzed up wheels and my floral crutches

One thing I’ve found over the years that has really helped me accept my mobility aids is having mobility aids that represent ‘me’. I personally could never accept long-term using the drab gray NHS walking sticks, crutches or rollators. The first walking stick I bought was floral patterned and then my first pair of crutches were silver with spots on in various shades of purple and a purple ferrules, handles and arm cuffs. My crutches now I have a custom design on which is a Cath Kidston floral print. My NHS wheelchair I jazzed up with spoke covers and pink push rim covers. I also plan on adding a bit of ‘me’ to my GTM wheelchair at some point.

I love what stylish mobility aids there are out there, especially for younger people who don’t want a drab NHS grey mobility aid, but unfortunately like most disability things stylish walking sticks, crutches, rollators and wheelchairs they often come at high cost. You can do DIY decoration on mobility aids such as on the more expensive side spoke guard covers to low cost coloured spoke covers for example, or using a can of spray paint. It’s nice to see how people have personalised their various mobility aids as you can see the expression of them as mobility aids are sort-of like an extension of ourselves and part of our bodies.

IBS Awareness - Living with IBS

April is IBS Awareness Month.

What is IBS and it’s symptoms?

Irritable Bowel Syndrome (IBS) is one of the most common digestive conditions. Around 1 in 5 adults in the UK have IBS. IBS is defined by belly pain such as cramps as well as wind, bloating and distension along with a change in bowel habits and changes to stools. Other symptoms include fatigue, nausea , backache and bladder problems. 1 in 3 people have IBS-C the C being constipation and another 1 in 3 have IBS-D with D being diarrhoea. Others with IBS might experience IBS-M which is a mix of experiencing both constipation and diarrhoea. Symptoms can be present daily for some people but for others symptoms can come and go over weeks or months. Symptoms can also alter over time. Symptoms often ease after a bowel movement. Symptoms can be unpredictable which can be challenging for some people.

Treatments for IBS

• Healthy eating and IBS dietary management 
• Identifying foods that trigger symptoms
• The Low FODMAP diet
• Probiotics
• Medication 
• Gut-specific behavioural treatments 

My experience of living with IBS

I’ve had IBS for many many years now. I feel that despite how common IBS is because IBS can be quite an embarrassing condition to have we don’t talk about it enough, especially for people to understand what it’s like to live with it and just how disabling it can really be. This means that IBS lacks awareness and understanding. People often think that IBS is just have bad belly cramps but there is so much more to living with IBS than that. The pain in your abdomen can be so intense that all I want to do is curl up in bed with my heat pad and moving makes the pain worse. Going to the loo with IBS is such an ordeal too and something I often dread. There’s also following my FODMAP diet to manage my IBS so there’s certain foods I can’t have or can have a little of; if I were to eat these foods it would result in my IBS flaring up. Clothing is also something that can be difficult when you have IBS. When I’m feeling bloated and uncomfortable I just want to wear something comfortable as tight clothing like jeans aren’t comfortable. I often actually wear maternity jeans, not really because of my IBS; mainly because they’re more comfortable to wear as a wheelchair user and as someone with a catheter but they’re also really comfortable when I am feeling bloated and uncomfortable. There are also extra costs to having IBS. Many people with disabilities and chronic illnesses face extra costs to buy things to help them manage their condition*.

There are many times when I’m in the bathroom or in bed hugging my heat pad to my stomach in severe pain because of my IBS. I also take medication to help with my symptoms which help. 

I also went on the low FODMAP diet a few years ago which really helped me identify my food triggers and now following the low FODMAP diet with the foods I can eat fine or a little of really has made a difference. I’d recommend the low FODMAP diet to anyone with IBS, you just have to start it under the guidance of a dietician so you’d have to ask for a referral from your GP or gastroenterologist. 

I personally like to do a lot of things alongside medication so as well as my heat pad and diet I drink plenty of fluids and I also find some herbal teas like mint tea, and I have a special digestive tea blend I drink as well to help settle my symptoms too.

Some of my symptoms can be quite difficult to live with. I find the belly cramps really painful. It doesn’t help that my Ehlers-Danlos also causes problems with my digestive system. Some symptoms are quite embarrassing so they can be hard to talk about and get help from medical professionals to sort them out so sometimes I’ve lived with symptoms for a long time before I’ve gotten help for them.

IBS is just a condition that I’ve learnt to live with. I get periods where it flares up and then I get times where it’s manageable. For me my IBS is often experienced as IBS-C so as well as medication to manage the cramps I’m prescribed laxatives which I take when needed. I also find having a healthy diet with foods that are good for digestive system help too alongside staying hydrated.

At the moment I am having some problems complicated by my Ehlers-Danlos so I’m waiting to see the gastrointestinal consultant and go from there if any tests are needed to investigate etc.

* Read about Scope’s ‘Disability Price Tag’ on extra costs here.

Things I find help my IBS

• Heat pads or microwave Warmies
• Portable single use heat pads that I can take out with me
• Wype* toilet paper gel - you just apply it to toilet paper, wipe yourself clean and pop it down the toilet - it’s much more environmentally friendly than toilet wipes
• Medication both prescribed and what you can get over the counter 
• Boot’s ‘IBS Cramps Relief’ (same medication as Buscopan)
• Boot’s ’IBS Wind & Bloating Relief’ medication
• Carrying a ‘Can’t Wait’ card in my purse to show that I need access to a toilet or Changing Places
• Keeping a RADAR key on me wherever I go - this gives me access to more public disabled toilets and Changing Places 
• Herbal teas
• Mint tea
• Happy gut tea
  
• Some yoga movements can help with my cramps - I can do these laid in bed

Resources

• Guts UK - Information on IBS
  
• Order a free ‘This Can’t Wait Card’ here
• Order an official RADAR key here
• Changing Places toilet map

My life with FND

Today is UK FND Awareness Day. 

FND stands for Functional Neurological Disorder this means that the function of the brain is fine, think of the brain like a computer and FND like the computer’s software. The computer itself is fine but the software isn’t working properly. This analogy is used a lot to explain FND. With FND the structure of the brain is fine but the brain’s and spinal cord’s messaging system isn’t working properly. This results in a wide range of symptoms. FND is experienced differently by each patient.

My FND symptoms

I was diagnosed with FND by an FND specialist neurologist on the 4th July 2017 after living with undiagnosed symptoms since 2014. Initially my FND began with mild non-epileptic seizures like absence and myoclonic seizures that I didn’t know what they were but I just thought I was tired and overworked. Then in February 2014 my life changed forever and I had my first tonic-clonic seizure. After my first tonic-clonic seizure they just spiralled and I was having multiple seizures a day.

As time went on I started experiencing other symptoms that I couldn’t explain. It was hard living with undiagnosed symptoms as you don’t have answers for what is happening to you and you feel helpless and desperate for answers and to know if there is a way for them to stop. 

I also experienced a lot of negative experiences from medical professionals such as gaslighting and refusal to treat me according to my care plan as some professionals thought I was feigning my symptoms for attention or medication or due to mental illness. This along with other experiences led me to develop medical PTSD so I find clinical settings especially the Emergency Department really difficult places to be in.

Developing FND has really changed my life. There are now a lot of things that I’m unable to do because it’s not safe. I’d love to be able to drive but due to my seizures I’m not allowed; I’d have to be a year seizure free - I can’t even go a week without having a seizure and I take the maximum dose of medication to control my seizures. Thankfully due to this medication I have a lot less tonic-clonic seizures and other seizures. I’ve also learnt what triggers my seizures some of them are stress, anxiety, heat, tiredness, pain and being unwell with an infection. Managing my triggers like staying cool when the weather is hot, managing my energy and pain levels (not easy especially when you also have M.E and EDS!) and keeping on top of my mental health can help to reduce my seizures.

Accepting the use of mobility aids has also helped with my mobility. Before I was diagnosed I carried around with me a fold-up walking stick to use when needed. Then in physiotherapy my therapist said I needed to use a crutch which would offer me more stability than a walking stick. Later I needed two crutches to help aid me walk as my mobility worsened. Then one appointment with my neurologist I asked him if he thought a wheelchair would help me or not and he responded with that he thought a wheelchair would really benefit me and he knew I’d use it when I know I needed to use it as he knew I wanted to keep my mobility as much as possible. The InvaCare Action 3 wheelchair I got from the NHS served me well for a long time but as my health conditions alongside my FND deteriorated and I needed to use my wheelchair more I knew I needed a wheelchair that would better meet my needs. I’ve had my GTM  Mustang, an active wheelchair exactly a year now and it’s made a massive difference to my live. It’s really improved my quality of life like for example if my FND symptoms mean I can’t walk I now have a wheelchair I can use around my home so I don’t have to stuck in bed. Plus I’m a lot safer as I now have less falls. My new wheelchair is much easier to self-propel so I don’t need someone to push me around which makes me feel more independent and gives me more freedom.

I’ve now learnt to live with FND and its symptoms. For me my FND is always there. I don’t get periods where I’m symptom free or experiencing very few minor symptoms and then have flare-ups where my FND symptoms become present for a period of time.

There are different ways I manage my symptoms. I do take different medications to help control my symptoms, for example medication to help with my chronic pain, muscle spasms and dystonia, neuropathic (nerve) symptoms and seizures. I also have prisms in my glasses to help with my diplopia or double vision as my FND causes visual changes. Most of the management of my FND though is self-management and these are things that I’ve learnt and developed over time. For example pacing and activity management, having rest periods or rest days, using my heat pad, doing physio or yoga as I find movement helps, engaging in self-care activities, distracting myself so it takes my mind off my symptoms, sleeping well, massage therapy, using mobility aids and other equipment and aids, staying hydrated, managing my seizure triggers and more. Managing my FND (and my other conditions) is literally built into how I live each day. Inevitably I do have good and bad days, sometimes a bad day can be brought on by a tonic-clonic seizure, high pain or fatigue levels or other symptoms being more present. If I’m having a bad day today like I am now as I type (I type my posts in little chunks to make it more doable to be a blogger with disabilities) - my pain levels aren’t great today and the numbness I get with my FND is more present today too so my PA suggested a pyjama day as I’d be more comfortable and I’m having a day in bed too. This is just one way I manage a bad day and I’ve planned as a distraction to finish this post and to do some colouring which I love as a distraction and self-care activity.

I definitely think medical professionals need to learn and understand what FND is and some of the main FND symptoms patients with FND may experience. I think this will reduce medical professionals not understanding us, like when my symptoms haven’t been believed and it’s lead to poor care and negative attitudes from the clinicians. I think non-epileptic seizures especially need to be understood that they are still neurological in nature and not the patient feigning them for attention or drugs - I think paramedics and A&E staff especially need to understand non-epileptic seizures from my own personal experience. I also think that more neurologists should have an understanding of FND. I’ve been turned down by several neurology services because FND isn’t a condition they treat as FND is such a specialist area and there are so few FND specialist neurologists. I also think more research is needed. There are tests for FND like the Hoover’s Sign for leg weakness and the Tremor Entrainment Test and things like EEG’s can rule out epilepsy. fMRI scans have shown to show FND but fRMI scans aren’t used as a diagnostic tool.

FND really has changed my life upside down and I’ve had to change the way I live my life to be safe and to accommodate my symptoms. Having a disability like FND is expensive as I need equipment and aids to allow me to do tasks safely, easily and/or independently. Wheelchairs and Batec’s definitely don’t come cheap and I’ve had to do a lot of saving up to purchase them. Then it’s everything else I need like hot water dispenser machines as I’m unable to safely use a kettle as when I first started to have seizures I poured a kettle of boiling water on myself so since then I’ve never used a kettle for my own safety. I also have to buy things lids for cups and lidded cups, straws (the straw ban really affected disabled people like myself), adapted cutlery, kitchen aids, heat pads, hands-free water bottles that attach to my profiling bed, my Flexzi stand that also attaches to my bed, grabber stick - the list goes on.

Despite living with FND and the limitations and costs it puts on me it has changed me as a person. I still do grieve for the life I’ve lost at times but my FND and becoming disabled because of it has made me realise what really matters in life and who in my life really matters too. I have more gratitude for the small things because they’re often the big things in my life now like a letter from a pen pal, going out on my Batec, spending time in my garden, or reading my kindle with a hot drink cosied up in bed in the morning. I don’t think I’d be the person I am today if I hadn’t of become unwell. Yes there are days when I wish I didn’t have FND or a disability because there are so many challenges like being in pain all the time or lack of wheelchair access and the grief I still hold for the life I’ve lost and where I could be if I didn’t develop FND. However I’ve managed to create a new life and I’m passionate about raising awareness and advocating for disability. That’s why I started this blog and I’ve done lots of awareness work which you can see what I’ve done here and I’m also a Storyteller for the disability charity Scope. As well I also really appreciate the support my PAs give to me each day the enable me to live independently and to life my life how I want. I also appreciate all the support my Dad gives me too.

Links

A good resource site for FND is FND Hope

Happy International Wheelchair Day 2026!

My NHS wheelchair

I’m very proud to be part of the wheelchair community. For me I’m an ambulatory wheelchair user, that means that I can stand and mobilise without a wheelchair; when I’m not using my wheelchair I use crutches to help me get around.

However I always use my wheelchair when I go out; sometimes I’ll also use my Batec if I know I’m going to struggle pushing myself. When I had my NHS InvaCare Action 3 wheelchair it was impossible to use inside but my new wheelchair allows me to use it inside. This makes life easier but also much safer as I can’t stand for too long as well I can have a very off-balance gait when walking plus when I stand up I get very dizzy and lightheaded and at times want to faint. So transferring into my wheelchair solves a lot of these problems.

March is a special month for me as last year towards the end of this month I got the delivery of my GTM Mustang wheelchair and the difference it’s made to my life has been incredible especially when I compare it to my previous NHS wheelchair.

My GTM Mustang

For me now my wheelchair means freedom and independence. Some of the customisations make it possible for me to use a manual wheelchair. My chair is very lightweight and I have lightweight Spinergy wheels. The lighter the chair the easier it is to push. I also have CarboLife L push rims with gekko grip which give me a bit of extra pushing power.

I actually like being seen in my wheelchair now and I like being seen as an independent wheelchair user. For example if I’m in a supermarket instead of my PA carrying the basket I’ll have the basket with my shopping in it on my lap thanks to my LapStacker which secures the basket on my lap.

For any wheelchair user I highly recommend getting a LapStacker!

I also love my Batec attachment. It’s a power add-on and since getting it it’s really helped my mental health. Even just getting out around my estate for some fresh air does me wonders. I went out yesterday just for a little ride, I was very glad I wrapped up warm and put my BundleBean on too for added warmth. But just that journey after being in the house for days really helped.

I’ve also done some wheelchair skills training with Freedom Wheelchair Skills. Stuart was a great coach and I learnt a lot and gained more confidence as a wheelchair user. I just need to practice and perfect my ability to do backwards balance (pushing your chair on your back wheels).

My Batec Mini 2

I think I’m very lucky to have my GTM wheelchair and Batec. I’m so grateful for to have them. I’m just taking each day as it comes as maybe in 3 or 5 years my needs might change with my wheelchair and I might need to add something like a SmartDrive to assist me. Who knows.

One of the things I recently highlighted at my local supermarket was the lack of an accessible scan as you shop checkout for wheelchairs. As amazing as my PA is I want to be able to do things for myself rather than rely upon her. We also highlights how the scanners are chosen at random so as a wheelchair user if I was on my own I’d be unable to reach a chosen scanner that was either at the top or at the bottom. The world just definitely isn’t made for wheelchairs but hopefully things are moving forward in the transport industry, in allowing wheelchair users to go on holiday, to access work, entertainment venues, hairdressers, shops, cafés, supermarkets and more.

So, what is International Wheelchair Day all about?

• It was founded in 2008 by Steve Wilkinson
• Today celebrates the freedom and independence wheelchairs bring to the disabled community 
• Today also highlights the need for more provision of wheelchairs and those who don’t have access to one
• Today also highlights the inaccessibility for wheelchair users such as the lack of ramps and lifts as well as more advocacy for wheelchair users 

My journey with anorexia

Eating disorder recovery symbol

* TW: Eating disorders and self harm*

Back when I was a teenager I really struggled with a lot of things. Home was difficult due to my mum’s BPD. School wasn’t great either. I was bullied in both primary and secondary school. I never felt like I fitted in anywhere, especially with my peers. I’d try to change myself to fit in but I felt awkward. I preferred the company of adults like the dinner ladies on duty in the playground or teachers. In primary school I’d much rather spend my break and lunch periods in the classroom tidying the classroom and doing jobs for my teacher. 

The move to secondary school I found really unsettling. This quickly brought on feelings of anxiety and depression; I was already deliberately hurting myself in different ways. I struggled to cope with the change of teachers and classrooms. I also found the playground dynamics difficult too. I’d gone from enjoying playing double Dutch skipping in the playground at primary school to just everyone using the playground to stand around in their cliques in. I struggled even more to try and fit in and to change myself as I moved around groups.

More often than not though I was bullied than being friends with people; if it wasn’t one person or group of people bullying me physically and/or verbally it would be another person or group. 

I took to spending my breaks and lunch periods in either the library or my favourite teacher’s classroom. 

I’d always avoided the canteen from day one as I found it too small for purpose and it was noisy and overwhelming. Not eating meant I could spend my whole lunch period in the library of my music teacher’s classroom. 

My only refuge at secondary school from feeling overwhelmed and anxious was to spend time in SEN unit doing worksheets so I didn’t have to be in the main school building. It saved me the stress and panic and worry of changing classrooms and teachers as well as being away from all the bullies.

Very soon my eating disorder took hold. It quickly went from skipping lunch at school to not wanting to eat at home too. I very soon became a vegetarian as it was something I could cut out of my diet. (I’m still a vegetarian now and always will be but I do it for the animals now.) 

Eating disorders are very manipulative. I remember my dad saying he’ll take me to the GP and I bargained with him that if I eat my packed lunch we won’t go. I made it look like I had so voilà no GP. However I annually saw my paediatrician for my spinal curvature and I got on well with him. I remember telling him how dark I felt and we spoke about my eating. My paediatrician diagnosed clinical depression and anorexia.

Very quickly treatment changed. I had to start seeing a dietitian who had zero clue about eating disorders and she was expecting me to do the impossible. I also had to see my paediatrician twice a week. That just lead to me spiralling even deeper. Eventually in October time I self-harmed by taking a small overdose. This fast tracked me to CAMHS: Child and Adolescent Mental Health Services. I started psychotherapy sessions with the CAMHS therapist that assessed me in hospital; she came to play a key role in my journey. Unfortunately I was in too deep with my eating disorder and depression and a couple of months later I was admitted to my first inpatient unit.

Going into hospital almost saved me in a weird way. I hated inpatient treatment but that first admission got me away from everything that was bothering me school and home.

I spent the next several years in various inpatient units. I restored my weight each time but it didn’t work on me emotionally. I think the problem was the lack of talking therapies. I’d get discharged but I’d quickly relapse and be admitted to another unit. I think what worked for me was in my last unit there was a social worker in that unit and I talked to her about home and basically my mum left and that really helped me. I was able to stay at home and what helped me to recover was my CAMHS therapist. I was in therapy with her for several years and slowly I opened up to her. I honestly think I owe my life to her and I will never forget her.

I relapsed with my anorexia again last year. I think the trigger this time was not feeling in control of my health and care maybe? I actually asked for help this time. I was assessed and then offered outpatient therapy. 

There were times earlier when I struggled with outpatient therapy and did want to consider inpatient treatment again but equally I really wanted to try and stay in my own home especially as I now have my own home. I’m still in outpatient therapy. It’s tough going and it’s often a real struggle but my therapist (who I get on well with thankfully), with has made a lot of suggestions to help me at home.

The therapy I’m doing at the moment is CBT-ED so it’s CBT specifically designed for eating disorders. I find my therapist challenges my thinking a lot or will get me explain something I say. I’ve also been shown a lot of resources some are general information to learn about various aspects of eating disorders then some resources my therapist gave me were aimed at specific things I struggle with as part of my eating disorder. I’ve found the education really helpful partly because I like to know and learn things but also it helps me understand my eating disorder. I really struggle with my body image but that topic isn’t worked upon until my weight is restored, something I’m making slow progress with and struggling with as well. 

Recovery takes time but equally recovery is possible.

Beat

Information and resources

Helpline - telephone, email, 1:1 web chat 

Life with chronic pain

September is Pain Awareness Month.

Name a type of a pain and I feel it. I’m not exaggerating when I say that I feel different types of pain, having multiple diagnoses each coming with their own types of pain mean that I do just experience different types of pain. 

Some pain days are better than others. Some days my pain is manageable and all I need is my regular medication to keep my pain manageable. Other days I can’t settle and I feel in despair over my pain levels; when I’m throwing all my pain management tools at my pain but still nothing is giving me any respite. 

In my bullet journal for this year I have a ‘Year In Pixels’ where I colour code each day marking each day from green to yellow to orange to red for my pain and fatigue levels each day. My really good days I mark down as green, a typical day I’d mark yellow, a bit of pain where I’ve used some additional pain relief I’d mark orange and those horrendous pain days I’d mark down in red. I probably am quite positive when I mark my pixels and I try to reserve the red days for those times for when my pain is leaving me in despair.

I take different types of medications a supplements to tackle the different kinds of pain I experience. Muscle spasms that leave me rigid, nerve pain that feels like a white hot nail is being dragged down, headaches and migraines, bladder spasms, generalised pain that can leave me so hypersensitive it’s painful for anything to touch my skin or I just get “pain” especially in my legs that I find hard to describe.  

I’m generally quite hypersensitive anyway because of my severe M.E. Noise and light and sometimes touch all cause me physical pain. It’s hard to explain how things like noise and light can cause physical pain, it’s just another unexplainable ‘M.E. thing’. Just like how my legs just deeply ‘hurt’ but I can’t describe the pain other than just a deep and intense hurting pain accompanied with hypersensitivity.

I don’t like to just rely upon medication to help with my pain. I like to take a holistic approach to my care including treating my pain. I’m not a person who will just sit back and let my doctor write out prescriptions and expect that to do all the work.

Massage therapy is one big thing that massively helps with my pain and when there’s been gap in my regular appointments I really notice it. I notice that my circulation is worse, I have more muscle  spasms and ridgitity too, I have more pain in my joints and my headaches are worse. All things and more Hollie my massage therapist targets when she does my massage therapy. My massages aren’t the ones you’d have at a spa. What Hollie does and is trained to do is to treat people with chronic health conditions and the physical symptoms. No two treatments are ever the same as Hollie always targets what’s bothering me the most each time I see her. She uses additional things to help my symptoms while treating me too, like heated mitts, hot compresses and hot stones. I can’t begin to say how much of a benefit massage therapy has been to me over the past couple of years. I honestly think it’s kept me going so well that it’s the reason why I’ve had so few increases in my medication doses over the years. I’ve had no increases in my pain relief at all which is amazing.

I always use the term ‘pain relief’ instead of ‘pain killer’ as my slow release pain relief and my breakthrough pain relief medication does just that, it gives me relief from my pain, it doesn’t kill or eradicate my pain completely (as much as I would love that to happen). Sure they help a lot and allow me to just about function each day and to have some form of quality of life, however my pain will still always be there to some degree in the background and my breakthrough pain relief will just give me som respite, some relief from the extreme pain I’m in.

As well as massage therapy I find heat really helps my pain too. I enjoy my hot baths in the morning. I also have electric heat pads and a heated blanket. I have hot water bottle and also a long hot water bottle that I find good for bladder, hip, back and shoulder pain. I have a rechargeable period heat pad that I use for bladder pain.

When I can tolerate it I really find my weighted blanket helps too.

I used to be able to tolerate my TENS machine that I found really helpful. It had a heat up part to it as well which I found helped too. I haven’t tried it in a while to see if I can still cope with it. I have my acupuncture/TENS pens that I can sometimes tolerate too so maybe I could tolerate a short session on my TENS machine on a good pain day maybe?

I find mindfulness helps too. Doing body scans (I have to find the right body scan exercise that doesn’t make me think about each part of my body for too long) I find good and have been recommended to me by pain specialists. I find visualisation meditations really effective as well as breathing exercises and soundscapes too. I use these during rest periods as I find regular rest periods help to prevent me from ‘booming and busting’ which among other symptoms makes my pain levels worse.

Pacing is important to manage my symptoms including my pain levels.

I find distraction helps as it takes my mind off my pain. Activities like colouring, crochet, iris folding, reading or listening to books or podcasts, any low-level activity that doesn’t use much energy I find helps take my mind off my pain.

I find this especially in the evening when I’m struggling to get off to sleep due to pain. I call my insomnia due to pain ‘painsomia’. My pain does affect me at night as I just lay in bed and I’m more hyper focused and hyper aware or the physical sensations and pain in my body and as a result the pain probably becomes more psychologically intense. I take breakthrough pain relief as I physically am in pain but I want to do something else to help my pain as well so I’ll put my audiobook on and lay and listen to that, or if I’m more restless I’ll do something creative or I might get myself a hot drink. Things that help my sleep problems as well as my pain.

When I can, physical movement helps too. I find it helps to keep my body active. I do my daily physio or instead I might do some yoga aimed at people with chronic illnesses. I’ll just do what I can within my restrictions and I just do 5/10 minute routines and I find this helps me mentally too to know that I’m staying active to aid my wellbeing and add to that holistic approach. If I’m in pain I find it helps to just move, stretch, wiggle etc. especially when it comes to my joint pain. I just stay mindful whenever I do yoga not to do something that would worsen my Ehlers-Danlos as that would just create more pain! I’d love to try movement in water in the form of hydrotherapy.

Another funny thing about me and living with pain is I always save my number 10 on the pain scale. Just in case I’m ever in a situation when I neeed my 10 but I’m sure even when that day comes I’ll still say 9. Stupidly my local hospital are now using a 1-4 pain sale. If I save my 4 there they won’t give me adequate pain relief. The 1-4 system really doesn’t work for people with chronic pain as when I’m asked what my pain is like usually I really don’t sound believable. I probably sound like someone seeking the best drugs they have and they have little clue about my conditions so me explaining my needs and care to them only worsens the situation. Unfortunately when you live with chronic pain you often have negative experiences in healthcare. I have had some positive experiences however but it’s hit-and-miss.

More awareness of chronic pain and how it affects individuals and listening to patients on an individual level is much needed as we’re all affected differently. We all have different medical conditions that affect us differently and the pain part of the that affects us uniquely too.

Links:

Pain UK

British Pain Society

Pain Concern

Disability Pride Month

Throughout the month of July Disablity Pride Month is celebrated. Unfortunately it doesn’t get the same coverage as the LGBTQ+ Pride Month; very few organisations change their logo to the Disability Pride flag and their isn’t the same sold merch. 

Disability Pride aims to celebrate the identities, achievements, and culture among the disabled community. There is also more of a push to promote inclusion and accessibility and well as reducing ablism and disability hate crime. Disability Pride Month came about in commemoration of the signing of  the Americans With Disabilities Act (ADA) which was passed on July 26th 1990.

So what does Disability Pride mean to me?

Disability Pride Month means a lot to me to as it allows me to celebrate my disability identity. It took me a while to identify as ‘disabled’. Initially I just saw myself as chronically ill then as time went on and understood the definition of what ‘disabled’ meant I began to relate to the idea that I was also disabled. Slowly more and more I referred to myself as being disabled and having disabilities. 

I’m not only dis-abled by my illnesses but I’m also dis-abled in society too. Such as lack of wheelchair access, cafés not providing allergy friendly food and drink options, places not having an accessible bathroom or Changing Places, no closed captions, plus the expense of being disabled, and difficulty getting access to specialist services in the NHS, poor care from care agencies are all dis-abling things (and more) I face multiple time a day.

This is why Disability Pride is important to me as it brings the disabled community together and we can highlight the issues we are facing. It means a lot to see disability being celebrated and I’d love to take part in some of the events to show able bodied people that disability comes in all forms and that we are proud to be disabled. Plus that we won’t tolerate the ableism, hate crime, lack of access, lack of inclusion and representation etc. I do wish there was more coverage of Disability Pride both on and off line as well as for there to be more events as well as Disability Pride parades in the UK. 

As part of Disability Pride some of the topics I feel need addressing are:

I wish topics like ablism were addressed more including what ablism actually is so people are more aware so incidents of ablism is reduced. Included in this is disability hate crime.

I also wish there was more of a push to improve accessibility into buildings, or at counters, or self-service checkouts as well as better accessibility on websites, autism screening times for adults at cinemas, more signed programs at normal times of the day, more ramps and push button doors and voice activated devices like being able to voice control my kindle. Sometimes I feel like accessibility is a forgotten thought. Or another example may be a shop might get a ramp because they have to but it’s not the right type of ramp for the actual user. (I actually personally have experienced this). Accessible holidays to be the same price and currently when booking somewhere accessible often the price of the holiday increases. And so so so much more that I could add! Included in this I’d like to see more accessible toilets and Changing Places be fitted with RADAR Key access. This means that only holders of RADAR Keys can access the facility and it will prevent accessible toilets having baby change facilities. As well as this it will reduce the misuse of these facilities. I’d also like to see signs saying ‘not all disabilities are visible’ on these facilities doors to help those with invisible needs feels able to use the facility and to not be judged for using the facility. People such as those with stomas, urostomy’s, catheters or conditions like Crohn’s or IBS or maybe someone who needs assistance from a carer when using the bathroom. I’d also like to see more Changing Place facilities too, especially ones with washing facilities and height adjustable sinks.

I’d also like to see more of a push to have more domestic violence refugees and services being made available and accessible to disabled and D/deaf women (and men). A 2025 Sky News report found that less than 1% of refugees were accessible for women who are wheelchair users. An older BBC Investigation in 2018 found around 11% of refugees were accessible so this may include accommodation for other disabilities.

As part of Disability Pride Month I’d also like to see more representation of disability on television. They manage for the Paralympics, so why can’t we have more D/deaf ot limb difference or wheelchair user presenters on television or playing parts not focused on their disability in TV dramas like a wheelchair user detective (I saw one on 24 Hours In Police Custody so they do exist) or even a female D/deaf Doctor Who?!

Not-so-happy Disability Pride Month

Currently in the UK our government wants more disabled people in work. The government are currently in the process of reducing ESA And the UC health element benefits in a bid to try and get more people who are currently out of work back into work. However many workplaces lack the access for a wide range of disabilities, even for those going for an interview. Plus there are few jobs that at flexible working especially from home which is what a lot of disabled people need. On top of that the support scheme to help disabled people in work call ‘Access To Work’ that provides equipment, software, support workers etc. is drastically being cut and taken away from those who need putting them in difficulty to be able to continue working. There is also a long waiting list to be assessed for Access To Work too and there is no guarantee you’ll get the support you need. (Disability Rights UK). More needs to be done to enable disabled people to work in a way that suites them and to have their access and support needs met. 

For those too unwell to work I personally feel the government should be fairly supporting them and not dismissed and be treated unfairly. Disability is the only minority anyone can join at any point. With the current changes our government have made if someone were to become disabled and unable to work in the next few months they will receive far less to live off financially in the UC health element payments compared to current claimants.

My article on Scope writing about what the cost of cuts could mean for me.

As well as this PIP, Personal Independence Payments, which is a non means teasted allowance to help disabled people cover the extra costs they incur. - See my post on some of my extra costs (and it’s grown since then as I’ve bought a £5,000 Batec and a £4,000 wheelchair. However there is a shortfall in in amount disabled households receive and the amount disabled households need. A household with at least one disabled chile or adult with need around £1,095 to live the same standard of living as a non-disabled household and that figure is set to rise. Yet the average amount of PIP a person receives is only £465 so there is a massive shortfall. (Scope: Disability Price Tag Report 2025). The government also are also going to make it harder for new claimants to PIP to be eligible for PIP especially when it comes to the daily living component. (There are two components to PIP: daily living and mobility.)

These changes passed by the UK government came into effect on the 9 July so a Not-So-Happy Disability Pride Month for disabled people in the UK.

Personally it feels harsh as our current government used to stand for the vulnerable and working and lower-class in society. I personally hoped a change in political leadership would be good and much needed for the non-10% in society. The government wanted to make these changes to saves billions and they felt too many people were on sickness benefits. (Well we have just had a global pandemic of course more people will be sick after that). However Liz Kendall, The Secretary of State for Work and Pensions felt people were ‘taking the mickey’ in her words when it came to sickness benefits (you should look at her wage, her husband’s wage, the house the own and then the expenses she claims out of tax payers money - that’s taking the mickey in my opinion). Anyway I feel that there were other ways the government could have saved a few billion pounds, like reducing MP’s wages, reducing the amount they can claim on expenses or stopping this entirely, taxing the well off in society more, going after large corporations that don’t pay their taxes, tacking the crisis we have with people coming here on boats, the about we spend in the Foreign Ministry on other countries sorting them out when our own country is a mess. (When I read Rory Stewart’s book I was shocked at how much the Foreign Ministry spend.) This is all my own opinion of course but I just feel that the government could have chose to do a lot more than target the disabled who are the most vulnerable and most likely to live in poverty (Disability Rights UK).