The Reality of ME/CFS, Fibromyalgia and Hypermobility – Guest Post by Tracy

‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Tracy

Hi I’m Tracy. I’m 50 years old and although I was born and bred in Belfast I now live in London with my husband and two grown up kids.

I’m a blogger and Social Media Manager for small business. I pretty much fell into the world of blogging as I had to give up my business as an independent driving instructor when I fell ill in my very late 30’s. I blog over at Just Me Being Mrs B about over 50’s lifestyle alongside living with chronic illness and chronic pain.

Tracy is sat at a table, in front of her laptop, holding a cup. Tracy has shoulder-length curled brown hair, is wearing glasses, and a white jumper with leopard-printed stars. She is gently smiling to the camera.
Tracy is sat at a table, in front of her laptop, holding a cup. Tracy has shoulder-length curled brown hair, is wearing glasses, and a white jumper with leopard-printed stars. She is gently smiling to the camera.

My Conditions

I was diagnosed with ME/CFS back in 2009. The Fibromyalgia was diagnosed around 2015 and more recently the Hypermobility in early 2019. In short, I’m constantly in a state of fatigue and my body hurts all over, all of the time. Now I’m not talking about an end of day or end of week tiredness here though. I’m talking about fatigue so bad I cannot hold my own body weight up long enough to make myself a coffee! That’s how I judge a bad day.

The pain just never seems to go. My body hurts to touch and the hypermobility creates a whole level of pain on top of that, particularly in my ankles and hands. My joints are incredibly loose and can dislocate, so I use hand splints and LOTS of sport support tape.

In the early days of diagnosis I kind of fought against the symptoms definitely to my detriment. As the years went on I found my peace with it all and know my limitations. Ok, I may know them but I still push past them way too many times.

I mainly use a walking stick wherever I go but if I’m going somewhere for the day where a lot of walking is involved I have my wheelchair as back up. I definitely still have a love/hate relationship with my mobility aids even now over 10 years into my illness. You will rarely see a photo of me with my walking stick. That’s my personal preference because although chronic illness rules my life now, it’s still only PART me. Just like my red hair or my Irish accent, or my love of 80’s music is PART of me.

My Symptoms

My symptoms don’t just stop at the fatigue and pain though. There is a myriad of daily symptoms from nausea, migraines, stomach issues, noise and light sensitivity to name just a few. I’m learning to better pace myself but I’m still not great at accepting the limitations that are forced upon me through illness. I have a real fear of ‘use it or lose it’ with regards to how much I can push my body to do. Rightly or wrongly this means the activity boom and bust is a big part of how I coexist alongside my illnesses.

However, this means from one day to the next I have no clue how I’m going to feel. I have a fogginess first thing in the morning until my body adjusts (almost like a hangover without the great night out beforehand) and then I can judge how my day might pan out. Sometimes I can still get that very wrong.

Tracy is standing at an angle in front of a white rustic wall with a painting on. Tracy is wearing a black dress, with a black jacket. She has should-length curled brown hair, and is smiling brightly at the camera.
Tracy is standing at an angle in front of a white rustic wall with a painting on. Tracy is wearing a black dress, with a black jacket. She has should-length curled brown hair, and is smiling brightly at the camera.

Have I Changed As A Person?

It’s a resounding yes to this. I have absolutely changed. The change was forced upon me. I don’t think anyone with chronic conditions would be able to say otherwise. Living with chronic conditions and daily chronic pain has changed my outlook on life. It’s changed how I view life. It’s also changed my approach to life.

All that alongside turning 50 can be a little eye opening I can tell you!

For a start I feel that living with the conditions I have has meant my life has slowed down considerably. In fact, with all the madness the Covid pandemic has brought on us I almost feel as though I have been in training for the lockdown life. The world suddenly aligned itself to my level of activity.

However, in other ways my illness has also changed things for the better. It sent me down the writing route through blogging which has opened lots of new opportunities and online connections that I wouldn’t have had otherwise. helping to raise awareness and normalise ‘invisible’ illnesses in particular has become part of what I do.

The work I do now though blogging and managing social media for small businesses works perfectly with my illnesses and symptoms. I can work in my pj’s. Not having to be ready and in a workplace by 9am is brilliant and allows me to work around when my body and brain are at their best. It’s the perfect working solution for me.

 Also being able to have my freelance business helps me personally feel that I can still contribute, that I am still worthy and that I am something other than just the crippling illness and pain. That is incredibly important to me and I think stems back from being ex forces and having that determination to make the best of a situation. 

The best thing is my work colleagues don’t judge me. Who am I kidding, they’re cats, of course they’re judging me!

So, you know……..swings and roundabouts and all that.

My Favourite Superhero

Superhero wise it has to be Iron Man. I adore the Marvel films and I could probably pick a few but Iron Man stands out because of his sarcasm and quick wit. With both my boys being in their 20’s now and both my husband and I being ex forces I can tell you this house absolutely runs on sarcasm, mickey taking and film quotes.

 In fact, that’s the attitude that has helped me get through the last 12 years living with chronic illness. Just thinking about it if we had Tony Stark on the case for a cure for M.E we would probably have one by now. We can always live in hope.

 Thank you so much Tracy for raising awareness!

If you would like to stay up-to-date with Tracy, then you can find her on Instagram, Twitter, Facebook, and her blog, Just Me Being Mrs B!

The Stationery Society Subscription Box – Seaside Themed – Review

AD – I was kindly gifted The Stationery Society’s first subscription box in exchange for a review. All thoughts are my own.

If you are obsessed with stationery like me, then this subscription box is definitely for you!

About The Stationery Society

Lucy and Paul, who launched a small indie business ‘The Stationery Society’, have devoted both their personal and professional lives to collaborating with, and showcasing the talents of creatives throughout the UK, manifesting their love for stationery.

Supporting small businesses is so important, especially due to the substantial impact the pandemic has had and still is having on small businesses. What better way is there to not only support a small indie business, but also the work of 4 – 6 talented creatives and manufacturers around the UK, all in one box! But wait, there’s more… 25% of sales from each box is donated directly to a chosen charity related to the specific theme of their monthly boxes. July’s theme is seaside and donations will be made to Surfers Against Sewage – a charity bringing together communities to protect our oceans and beaches.

“Working closely with them to create something very special and unique.”

Source: The Stationery Society

There are several subscription options to choose from:

  • Monthly Subscription – £16 per month
  • Quarterly Subscription – £45 every 3 months (£15 per box)
  • Six Monthly Subscription – £84 every 6 months (£14 per box)
  • Yearly Subscription – £150 per year (£12.50 per box)

… and you can purchase the previous month’s box too! (The seaside themed box is the first box)

First Impressions

I feel very fortunate to have received The Stationery Society’s first-ever subscription box and couldn’t wait to look at all the goodies inside. I’m the type of person who trails through reviews to influence my decision on making a purchase – obviously, with this being the first-ever box and no reviews made, I was sceptical of the quality.

When I opened the box, there were two cards placed on top of the packaging, one card gives a short introduction about The Stationery Society and explains which charity that 25% of sales from each box will be donated to. The second card reveals the artists and creatives behind each specific product which is included in the box. It finishes off by announcing the theme for the following month.

The packaging was minimalistic, which I thought was very good, as less is often more. The layout of how the products were placed was excellent, ensuring that each item was neatly on top or against another item to lower the likelihood of the products moving around when the box had been dispatched – it was very clear that a lot of thought had gone into this.

So, what was inside?

Seaside Themed Products

Oh, I do like to be beside the seaside, can’t think of the seaside without singing that, can you?

Cards by Sofia Barton, Rho Rho Illustrations, Nichola Cowdery, Lisa Kirkbride

Finding the perfect card for a specific occasion can be tough as there are so many to choose from, and it wouldn’t surprise me at all if there was a card for anything and everything as people are becoming more creative in ways to remind their loved ones that they’re thinking of them, which is absolutely beautiful!

The 4 cards are of high quality, when you hold them you know you’re holding something special.

4 cards are placed, in a slight descending line, on top of the seaside-themed products. From left to right, the artists of the cards are Sofia Barton, Rho Rho Illustrations, Nichola Cowdery, and Lisa Kirkbride.
4 cards are placed, in a slight descending line, on top of the seaside-themed products. From left to right, the artists of the cards are Sofia Barton, Rho Rho Illustrations, Nichola Cowdery, and Lisa Kirkbride.

The selection of cards included in this month’s box was quirky and different. The cards shown in the above image are in the same order as the artists, in the heading, who created them. My personal favourite is the second card from the right, by Nichola Cowdery – the design is unique and despite being unable to think of a recipient to send this specific card to, I would be happy to keep this in my collection of cards (you know the ones, birthday and Christmas cards from loved ones over the years… or is it just me?)

Pin badge by Netoon

You can’t resist an unusual pin badge, even if it is of a seagull. Mind you, I would rather have a seagull pin badge attached to me than the delightful stuff that dispatches from their rear… Hey, instead of the seagull’s ‘luck’, maybe this pin badge could provide you with its own luck and deter the seagulls! I’ll see if it works… watch this space!

This enamel pin badge is intricate yet funky, a combination I never thought would be used in one sentence! It has two pins on the back so that it will securely attach to an item of clothing or any accessory you would like to attach it to.

Ami is holding a small card with an enamel pin badge attached. The pin badge is a cartoon design of a seagull with a chip in between its beak.
Ami is holding a small card with an enamel pin badge attached. The pin badge is a cartoon design of a seagull with a chip in between its beak.

It makes me chuckle as it brings back all the memories of eating chips on the pier when I was little and I always tried to count how many seagulls there was, but alas I failed as there were too many. Touchwood, I don’t think a seagull has ever stolen a chip from me, but I’ve watched them steal other peoples chips… and I’m sitting there laughing my head off!

“That by even the smallest of purchases from a small indie business, you are making such a big difference.”

Source: The Stationery Society

Notebook by Becky Hodgson

I LOVE NOTEBOOKS… who doesn’t? This amazing A5 notebook is perfect to take with you to the beach, the design is very appropriate, don’t you think?

Do you like running your fingers up and down pages to get a sense of the quality? I do as it is very satisfying. Let me tell you, if you enjoy it then you will be very happy with this notebook as the pages are smooth and flawless. In fact, everything about this notebook oozes quality!

Ami is holding an A5 notebook, titled Seaside Essentials, created by Becky Hodgson.
Ami is holding an A5 notebook, titled Seaside Essentials, created by Becky Hodgson.

I adore the design as it’s funny and realistic. Although I’m not quite sure what the animal is, I want to say it’s a cat, yet my mum thinks it’s a pig… I’m pretty sure she is going by the colour though! I really like how it’s laid out like a diagram; a must for people who aren’t used to going to the beach. Below is a run-down of what the arrows point to, in the design:

  • Envy inducing hat and sunglasses.
  • Beach bag (contains snacks).
  • Jazzy swimming cossie.
  • Crab – Crustacean friend.
  • Seagull – Evil snack thief (beware).
  • GIANT ice cream.

It’s hilarious as it is the ultimate realistic view of a trip to the seaside!

Added Extra: Postcards and Notepad by Laura Burnett

Postcards feel very nostalgic to me, I’ve only ever seen the same design growing up, which were either a popular aspect of a certain town or that have multiple snapshots of areas around the towns. However, the postcards included in the subscription box are different and it’s refreshing to see!

5 postcards are placed alongside and above the other. Top row design: dark blue background with multiple small red fish and one white fish. Middle row, left side design: background is dark blue and white, with red stripes, against the dark blue, representing a sunset. Middle row, right side design: background is dark blue and white, with a matching red and white striped parasol and deckchair, and a little crab. Bottom row, left side design: background is dark blue and white, with a white surfboard with a mixture of small and big dark blue circles, and a red surfboard with white leaves. Bottom row, right side design: background is dark blue and white, with a dark blue and white beach ball, and a crab sitting atop of it.
5 postcards are placed alongside and above the other. Top row design: dark blue background with multiple small red fish and one white fish. Middle row, left side design: background is dark blue and white, with red stripes, against the dark blue, representing a sunset. Middle row, right side design: background is dark blue and white, with a matching red and white striped parasol and deckchair, and a little crab. Bottom row, left side design: background is dark blue and white, with a white surfboard with a mixture of small and big dark blue circles, and a red surfboard with white leaves. Bottom row, right side design: background is dark blue and white, with a dark blue and white beach ball, and a crab sitting atop of it.

I like them all, and if these were displayed in a gift shop then I would be more drawn to these postcards as they would stand out from the rest. The card used is very good quality, not flimsy at all. I think postcards are a lovely addition to this month’s box!

Notepad

I’ve seen over the last couple of years that bullet journals are very popular, but I’ve found it difficult to try due to my dexterity and poor fine motor skills, and feeling frustrated because I was struggling to be creative with it and make it suitable for me.

This seaside-themed notepad is IDEAL for me, as it has everything on one page! You can peel the pages off as they are a larger version of sticky notes/post-it notes, but without the stickiness! I counted how many pages there are, and I was impressed when I got to 21 – it has you covered for 3 weeks! Again, like with every other product in this subscription box, it is of high quality!

A large notepad with scattered white starfish and seashells against a blue background. There is an outline of a fish to write the date, a trio of crabs representing how you are feeling. On the left side is a big white seashell to write random thoughts in. In the middle is a slightly bigger white seashell as a to-do list. On the right side, below the crabs, are two smaller white seashells, one for writing top priority tasks in, and the other for your doodle of the day.
A large notepad with scattered white starfish and seashells against a blue background. There is an outline of a fish to write the date, a trio of crabs representing how you are feeling. On the left side is a big white seashell to write random thoughts in. In the middle is a slightly bigger white seashell as a to-do list. On the right side, below the crabs, are two smaller white seashells, one for writing top priority tasks in, and the other for your doodle of the day.

I know I’m repeating myself now, but this notepad is amazing! My favourite aspect of this notepad is the to-do list as it is the perfect size to write down what I need to do – with all my other to-do-lists, I’ve found them daunting as you can easily flick over to the next page and write more tasks, and it becomes overwhelming, am I right? But this seashell-sized to-do list is fantastic in preventing me from feeling overwhelmed with lots of tasks!

Another aspect I love is the random thoughts seashell as I can 100% guarantee you that if I have a lightbulb moment, you can bet any money that I’ll forget if I don’t write my idea down in the next 10 seconds! Not that I have many bright ideas every day but still, it’s handy to have!

… and the mood crabs because they are cute!

“Happiness can come in beautiful small packages and create the biggest amount of joy.”

Source: The Stationery Society

Overall Thoughts

I am absolutely blown away by the level of quality that has been packed into this box. Every product is unique and, goodness me, there is so much to love about what The Stationery Society do! I’m excited to see the diverse range of creatives and artists that they will be showcasing in future boxes, the different themes, and the amazing charities they will be supporting every month!

The first box has set the bar high and I’m eager to see what designs are included in next month! SPOILER: I think it’s obvious that I will be continuing with this monthly subscription (Sorry Ewan… totally not sorry! He moans that I have too much stationery… ha! what does he know?!)

Note: If you follow me on Twitter, Instagram, or Facebook, then keep an eye out for snippets of this review, and all the incredible artists will be tagged so that you can support them too!

My Experience with Personal Independence Payment… Continued

This is the second part of My Experience with Personal Independence Payment.

In March 2018, I was hospitalised due to being unconscious, contracting bilateral pneumonia and it was the beginning of a very long 9 month hospital and rehabilitation stay. It wasn’t until one day during my rehabilitation stay, that me and my OT were planning a trip into the city centre, we got on to the subject of PIP, and she questioned if I was still claiming it while I was in rehab.

Yes, I was still claiming PIP, we were now in July. When mum came to visit me that evening, I questioned her about it, to which she then read up about it online. She thought if the claimant is to be in hospital for longer than 28 weeks then they/someone on their behalf needs to make PIP aware of this.

But it wasn’t 28 weeks, it was 28 days. I had received, roughly, just over £2,000 in total, when I shouldn’t have. Being critically ill, it’s understandable that PIP wasn’t forefront in our minds. Mum contacted PIP the following morning, and thankfully, she spoke to someone and explained the situation. Credit where credit is due, the woman she spoke to was very understanding and reassured mum. For the time being, my PIP would stop and continue again once I was discharged home and reassessed, then a repayment plan would be sorted.

My Thoughts

I completely understand why a benefit would need to stop if the claimant was to be in hospital for a prolonged period of time, but if that is the only source of income for the claimant, what will they pay bills with? Do bills get to stop too? No, my view is that there needs to be some financial help available for people who are in hospital for a long time.

Second Attempt

In March 2019, I was reassessed and this time, the assessor would come to my home to carry out the assessment. The woman was absolutely lovely from the get-go, she had a distinct accent (Scottish, I think) and she really took her time with me and helped me to understand what she was asking of me.

I didn’t feel like I was being assessed, it just felt like I was telling someone what I can and can’t do, what I need assistance with, and if I used any aids. I was very fortunate to have two lovely and understanding assessors, however I am very much aware that this is not the case for everyone.

Overall, I think she was here for about 2 hours as she kept asking me to pause because she was writing what I was saying, word for word. Despite feeling like I answered every question to the best of my ability, and the overwhelm of negative stories online, I was convinced that I would be refused, or only receive the standard rates for both components.

I waited roughly 8 weeks for my decision letter. I had to read the letter several times to make sure I had read it correctly. They confirmed that I would be in receipt of Enhanced Daily Living and Enhanced Mobility, and that I would not be reassessed until May 2029. I cried with relief, knowing that it would be one less thing to worry about.

I was able to pay off the debt within 10 months.

How the Money Helps Me

If you are regular readers of my blog, then you might remember that I have a Motability car – this is because as I was receiving the enhanced rate for the mobility component, I was eligible to get a car from the Motability Scheme. Instead of PIP paying me the full amount (both components), they no longer pay me the mobility component but instead pay it to Motability for my car, therefore I only receive the payment for Enhanced Daily Living.

Having a WAV (Wheelchair Accessible Vehicle) has given me so much more independence as it enables me to go out and about in my powerchair. With Motability, all I have to pay towards my car is the petrol – my mobility payment from PIP which is paid directly to Motability, covers the cost of repairs, tax, insurance and more. Completely stress and hassle-free which I love!

I receive £358.40 every month, for the Daily Living component. This money goes towards petrol, my share of the bills, food shopping , and other essentials to see me through the month.

Final Thoughts

When I began working at 16, after leaving school, I never wanted to claim benefits because, admittedly, I saw it as a shameful thing. This was solely due to the area I lived in at the time and the stigma around benefits was paramount. But like with many things, perspectives change when you experience something yourself.

Benefits are there to help and there shouldn’t be any shame towards claiming them. We all need help from time to time, and that shouldn’t be something to feel guilty about. PIP enables me to live a little more independently, and there’s nothing wrong about that.

A Bit of News…

If you read my monthly round-ups, then you may or may not remember I had a photoshoot…

Well… here’s what the photoshoot was for!

Box opening revealing Issue ‘2 of Paranting Magazine with me on the front cover!

It feels very bizarre seeing myself on the front cover of an amazing magazine!

I chat with Sophia about certain phases throughout my life, what happened in 2018, adapting to motherhood and more. Plus, there are some very adorable photos of Daisy… and me, but obviously she steals the spotlight and I’m just photobombing!

The Reality of Spinal Muscular Atrophy – Guest Post by Gemma

‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Gemma

Hello, I’m Gemma and I’ve been blogging over at Wheelescapades for almost five years. I’ve always enjoyed being creative and had considered starting a blog many times. There’s lots people don’t really understand about disability, SMA (Spinal Muscular Atrophy) in particular, and it can make for quite the adventurous life. Not much goes smoothly when the world isn’t equipped for you. 

I wanted to document my escapades and bring awareness to the obstacles I come across. Inaccessible buildings, badly designed venues, storage cupboard accessible toilets, broken lifts and never ending shingled pathways! With a hope to make people think, but also realise, that we are all just people wanting to get by in life, and enjoy it along the way. 

I like to spend my time crafting, socialising with family and friends, going to festivals, watching live comedy and dining out. I’m also an avid tea drinker!

Gemma is sitting in her powerchair, smiling at the camera. She is at a cocktail making class. Gemma is also wearing a badge with her name on.
Gemma is sitting in her powerchair, smiling at the camera. She is at a cocktail making class. Gemma is also wearing a badge with her name on.

Spinal Muscular Atrophy

SMA is a genetic condition that causes progressive muscle weakness (atrophy) and loss of movement. Motor neurons (nerve cells) connecting the brain and spinal cord to muscles in the body, deteriorate. It affects the muscles used for walking, sitting, moving, swallowing and breathing. There are four main types of SMA, I have type 2, which is the second most severe and means that I was never able to crawl or walk.

Personally I believe that the lines between SMA types can blur. Each person, even those with the same type 2 as myself, can differ hugely in ability and progression. As you can see, I’m not the best at articulating the science-y stuff about SMA! My focus is how it affects my daily life, and how I can work with that. 

Symptoms and Diagnosis 

On the outside I am a full time wheelchair user, I have never been able to walk or crawl. On the inside, what’s not so visible, is the affect SMA has on my whole body. I was diagnosed with SMA Type 2 at 11 months old. I wasn’t reaching the usual milestones expected as a baby turns toddler. I struggled to keep down food and put on weight, I wasn’t able to sit unaided, and had very poor neck control. After being told multiple time that I was ‘just a lazy baby’ my Mum managed to be heard, a muscle biopsy was done, then a diagnosis given. 

Back in the day (36 years ago) prognosis was bad and I was given a 2 year life expectancy. Medical treatment and technology have evolved. And I’m here typing this now. On my tiny phone, I might add. Because that’s what living with SMA is like. 

How Spinal Muscular Atrophy Type 2 Affects Me

As an adult I have very limited movement and strength. I can use my hands and lower arms, but need things to be lightweight and within a fingers distance. Hence the typing on a tiny phone, when I also own a perfectly good laptop. Although I now get much of my nutrition via a feeding tube, I still enjoy eating (I mean who doesn’t?!) and like to indulge in regular afternoon teas. I’m a social eater, am pretty slow, and have mastered the art of eating crisps with a fork. I eat everything with a fork due to limited jaw opening and arm reach.

One of the most frustrating symptoms of SMA for me is the deterioration of my breathing. I now require a BiPap non-invasive ventilator to assist me to breathe while sleeping or if I’m unwell and feeling particularly fatigued. It’s not the wearing of this that bothers me, but the susceptibility to chest infections. Due to progression in weakness of my breathing muscles, I have an almost non existent cough. A simple cold could turn to pneumonia, and last year I landed in hospital with flu. Respiratory physio, BiPap use, breathing exercises and prompt use of antibiotics is key as soon as I start to feel unwell. 

I have a team of Personal Assistants that enable me to live as independently as possible. They help with all of life’s tasks including, washing, dressing, cooking, fetching, driving, accompanying and supporting. I’m undecided if it’s like having an entourage to grant my every wish, or a group of weird stalkers. A bit of both probably.  

Up until very recently there has never been any treatment or medication specific to Spinal Muscular Atrophy. It has always been about managing the symptoms with physio, and using medical interventions for breathing and feeding. It has been a matter of working out how you can support the progression. 

Now, though, treatments for the actual condition are being developed, trialled, and used. I started a new medication, Risdiplam, a couple of months ago. This enables the body of a person with SMA to produce a protein that it has never been able to before. With an aim of halting progression. This medication is not yet available on the NHS, and I only have access to it via EAMS for the time being. It’s early stages for myself, but the results seen in children really are amazing. 

Learning to Adapt

If there’s one thing SMA has taught me, it’s that there is almost always a way. Having very limited movement is a frustrating challenge, there’s no denying that I would often prefer a simpler life. One in which I can make my own brew and style my own hair.

I’ve always lived with Spinal Muscular Atrophy, so it’s been a life of adapting along with the progression. When I lost the ability to write with my right hand, I learned to start using my left. When at art school I couldn’t reach the easel, I made a makeshift one on my desk. When I then couldn’t reach the top of the page, I turned it upside down and completed it that way. When the laptop keyboard was bigger than my reach, I got a cool app so that I could type on my phone and it appeared on the laptop screen. When I couldn’t bite into a burger anymore, I ate it in layers. Next I cut it up and used a fork. 

Technology really has made the world much more accessible. With just my phone and Alexa Dot I can control the tv, make calls, send a message, read a book, write this post, learn a new craft and do the daily crossword. If only the rest of the world adapted just as easily and quickly. I am constantly frustrated with the inaccessible environment of steps, narrow doors and peoples assumption of who I am and what I can (or cannot is probably more accurate) do. 

Gemma is in her powerchair and smiling, she has a large leaf hanging above her head. Gemma is at a tropical outdoor garden centre.
Gemma is in her powerchair and smiling, she has a large leaf hanging above her head. Gemma is at a tropical outdoor garden centre.

Have I Changed As A Person?

Having always lived with SMA it’s difficult to know the person I would have been without it. I like to think, fundamentally I am and always would have been the same person, as in beliefs and personality. But there is no doubt that SMA has had an influence on my life. Not necessarily in a negative way. My physical limitations have made me think creatively in terms of looking outside the box, but also in terms of my interests. Art is something I have always enjoyed, it’s where I feel free and it is something I have control over.

Living with SMA has probably encouraged me to appreciate things differently. I’m all about the details, the little things in life. The big stuff, like relationships, having kids, career choices. It’s sure to have been different. Just like with any of us, each tiny event or decision we make sparks another, which makes a life what it is. 

I’d like to have travelled the world. That’s for sure. I guess really though, we will never know. 

My Favourite Superhero

I’ve always been a Batman fan, I remember, as a child, watching the 60’s tv series with Adam West and Burt Ward (I wasn’t born in the 60’s, they must have been on again in the 90’s!) with all the ‘Ka-pow!’ -ing and gadgets. I reckon he could create me a pretty cool Batmobile inspired wheelchair with extendable arms and a built-in tea maker.

Thank you so much Gemma for raising awareness!

If you would like to stay up-to-date with Gemma, then you can find her on Twitter, Facebook, Instagram, and her blog, Wheelescapades!

The Reality of Cerebral Palsy, Poly-Cystic Ovary Syndrome and A Hiatus Hernia – Guest Post by Emily

‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Emily

My name is Emily, I am a 20 year old student and I am from Bury in Manchester. I have cerebral palsy, PCOS (Poly-Cystic Ovary Syndrome), and a hiatus hernia. I read French at Jesus College, Oxford University and I write my own blog on fashion and disability issues.

Emily is sitting in her wheelchair, smiling at the camera.
Emily is sitting in her wheelchair, smiling at the camera.

Cerebral Palsy

Naturally, I was diagnosed with CP first: I was born with it. However, it took me until I was three years old to get a diagnosis – a year later than most children. My doctors have attributed this to my having a mild-to-moderate case, but, judging by my mum’s stories, some signs should have been picked up sooner, and I believe she was not taken seriously enough when she raised concerns.

My CP affects me in several different ways, and I think it is worth remembering that Cerebral Palsy is an umbrella term covering multiple conditions. I have spastic diplegia, characterised by tightness in the leg muscles, which causes them to be prone to spasms. Spasms hurt a lot and render my legs and hands completely useless. I struggle with my balance and coordination, which means I am incredibly accident-prone and messy, and I deal with chronic pain and fatigue daily. 

I have developed lots of different coping strategies over the years, but I would say the number one thing to help my muscles have been swimming. I have swum since I was seven and competed since I was nine. My training has maintained my mobility over the years and kept me strong despite several growth spurts, so I have only needed three surgeries so far. As far as studying and writing go, I plan my days carefully and take regular breaks. I was lucky enough to get a good deal with my Disabled Students’ Allowance, so I rely on the equipment a lot to get my work done. Different software helps keep me focused when I am fatigued, while my ergonomic chair helps me deal with chronic pain. I have also learnt to let myself use my wheelchair and crutches more, and that has mitigated my pain significantly.

My CP has touched every part of my life, from my education to my relationships with other people. Unlike my other chronic conditions, my cerebral palsy is part of me, and I would not cure it if I could. People seem to believe it has made me tougher, but I could not even imagine who I would be without it. Also, the idea that traumas make us stronger people makes me uncomfortable: I was a child for most of them, and no child should have to toughen up.

Hiatus Hernia

I was diagnosed with my hiatus hernia when I was 17. My diagnosis followed a long period of being in immense pain almost every time I ate if I could keep my food down at all. I became underweight, my hair was thinning, and I needed fillings because my stomach acid was causing my teeth to dissolve. Most of my doctors were adamant that it was purely stress-related at first, so it took me losing quite a lot of weight for them to take me seriously.

Eventually, I had a gastroscopy that confirmed my stomach had herniated into the gap between my diaphragm and oesophagus, causing me to develop GERD (Gastroesophageal Reflux Disease). This was what was causing the vomiting, indigestion, and pain under my sternum. Even after my gastroenterologist gave me medication to ease my symptoms, putting the weight back on was a challenge. I still had a mistrust of certain foods, and my appetite was not what it once was.

It took my physiotherapist putting a good word in with a dietician at her clinic to get me help. He gave me advice on how to get more calories in my diet without upsetting my shrinking stomach, and he also prescribed me nutrient shakes to top up what I was missing. The weight took a while to come back because, as a result of my CP and fast metabolism, I need a great deal of food to maintain my weight as it is. I got there, though. So now, with a few alterations to my diet and my medication, I am back to my usual, food-loving self.

Poly-Cystic Ovary Syndrome

My journey with my PCOS diagnosis has been my hardest one so far. It started when I was about 14, and my periods were agonising. I would be bed-bound for the first few days and have horrific cramps that would cause me to double over in pain. Like most teenagers with period pain, I was given the pill and sent on my way. It did mitigate some of the problems, but I knew it was not quite enough. However, I was terrified to come off it and go back to my debilitating symptoms.

Around the time I was applying to Oxford, the decision was out of my hands. I started my period, and it simply did not stop. It was exhausting more than anything, and I felt like I was dragging myself from one day to the next. There was a female doctor at the surgery who saw me while my GP was on leave, and she had the foresight to book me in for an ultrasound scan. After I finished with my scan, the scan technician did not even pretend he could not read the scan. He told my mum rather bluntly I “clearly had PCOS,” but I still had to wait to see a gynaecologist verify my scan and look at my blood results.

When I did get to see her, everything that could go wrong did. They had not added me to the appointment list correctly, so I was not seen until the end of the evening. We queried why the appointment was so late, and then the administration added me to the end of the appointment list, so she did not see me until 6:30 pm. She was even more brutal than the scan technician and seemed irritated with me because my surgery had not sent my scan over to her. My evening got worse when she told me I had to come off any HRT and start fresh to see how my periods would regulate themselves without the medication.

Enduring those three months was tough. I had horrible mood swings; I was hot and clammy all the time, and each time I showered, I would lose more and more hair. I got to the end of it and was finally rewarded with my diagnosis. However, in that appointment, the gynaecologist told me that it was unlikely that I would be able to have children. I was heartbroken. I still grieve in a way, but I take some comfort in the idea that, maybe, this is the universe pushing me towards being an adoptive mother, and that is what I ought to do.

I am still waiting to be treated correctly. The combined pill gives me horrendous migraines, so that is out of the question. The medication I am on currently may damage my fertility further, and I have been on it longer than I should have, thanks to the pandemic. I manage my hair and skin by using higher-end skin and haircare and keeping myself clean to control the oiliness. I take comfort in presenting in a feminine way and looking after myself because it alleviates the disconnect I feel from my womanhood because of my higher testosterone levels.

The other common fix for PCOS is diet. However, the diets for a hiatus hernia and PCOS conflict. I need to eat plenty of dairies to keep my calcium up since my stomach does not absorb it properly, yet this aggravates my PCOS. Trying to regulate my carbohydrate intake is also challenging as I need plenty of carbs to keep my energy levels up. For me, maintaining all my conditions in tension with one another is the hardest part. Dealing with a bad pain day while getting my period is awful, and needing to eat while not being able is hard to manage. I get by, though – with only the occasional crash.

My Favourite Superhero

My interest in all things femme means my favourite superhero is Emma Frost. I love her aesthetic and how she can use her powers as a telepath to work as a femme fatale. The X-Men universe has always been a favourite of mine because of how it deals with physical differences and being labelled as an outcast. I find Emma’s journey from a villain to a hero more intriguing than other heroes who have a clear moral compass; her growth as a character since the beginning of the series makes her a compelling character.  I have also enjoyed her recent storyline with Kitty Pryde, and I believe it is one of the best LGBTQ+ relationships in comics.

Thank you so much Emily for raising awareness!

If you would like to stay up-to date with Emily, you can find her on Twitter, Instagram, and her blog, A Shaky Precipice!

July 2021 Round Up

Daisy (8 months)

Daisy is smiling, laying on her superhero themed milestone blanket. There is a red caption shape around the number 8 and another caption shape around the word months
Daisy is smiling, laying on her superhero themed milestone blanket. There is a red caption shape around the number 8 and another caption shape around the word months

Loki (Episode 5)

What an episode! This episode was aesthetically satisfying – absolutely beautiful, purposefully glorious! You know what I mean…. it was this episode that confirmed what I initially thought the secret message behind the series was. I will explain more below.

WandaVision Exclusive

If you read my June 2021 Round Up, then you will know I’ve pre-ordered a Loki exclusive, I won’t say what as I want to surprise you all when it arrives. Anyway, a WandaVision exclusive became available and I couldn’t resist it, and pre-ordered that aswell. It should arrive some time in August and I’m so excited for it!

Physio

Sophie, and my PT (I’ll refer to her as R), were amazed at my video, which made me happy. In this session, I did some leg exercises on the plinth, standing and swaying (I was meant to) whilst holding on to the bars, AND, a very big and, I successfully transferred from powerchair to plinth and vice versa with the support of Sophie and R! Woohoo!

They were the best transfers I’ve done since before Daisy was born, so just over 8 months. I feel much more at ease when transferring at rehab, I can focus on myself without any distractions, I’m just not sure why I feel uneasy and am shaky when transferring at home. I just hope it improves over time.

Loki (Finale)

The finale of Loki was perfect, including the emotional rollercoaster that we weren’t expecting to ride on! The slow pace of the episode felt right, and it delivered some epic cliffhangers. The point I touched on above, about the secret message behind the series, I will explain now.

Loki is a complex character with a troubling background. The truth is, he doesn’t want to hurt people, he doesn’t want to be alone, and so on. Meeting Sylvie was, undeniably, a massive shock to his system, he had finally met someone who was exactly like him. Sylvie was known as a variant, and unbeknown to Loki, he would meet more variants of himself.

All these variants had different personalities and different appearances, but all were a form of Loki, for example, Classic Loki, President Loki and even Crocodile Loki (yes you read that correctly). Loki quickly learned about all these different sides to him, resulting in him gaining a better understanding of himself. Slowly, his villainous facade was fading, and the hero inside became more apparent.

In short, Loki has discovered his true self, and learned to love his strengths and flaws.

I cannot recommend this series highly enough, it was perfect from start to finish and I could happily watch this over and over again because of the extraordinary storytelling. Obviously, I’m going to give a big shout out to Tom Hiddleston because he was meant for Loki, and Loki for him. Absolutely flawless and I hope this series gains many awards.

New Volunteer Role

Ooh I am very excited about this! I am now a Social Media Volunteer for lABLEd podcast! the podcast was created by Alice and Lucy who discuss all things disability, challenging labels and societal expectations. They are funny, honest and don’t sugercoat anything. You can expect a little profanity from Alice, and Lucy might cry (if you listen to their podcast/read their transcripts then you’ll understand).

So excited to start this journey with them! If you go on their website, then you can follow them on different social media platforms too!

Primark

It doesn’t feel like a year since we had that shopping spree at Primark but it sure is! It was Daisy’s first trip there too and after choosing a cuddly toy, she fell asleep. As usual, i bought several pairs of leggings, and cheap bits and pieces. Pretty uneventful but they’ll see me through for a while.

Stair-lift Stopped Working

This was unexpected and to be honest, I was dreading the day if it ever were to happen. It was like playing a game of heads or tails – would I be stuck downstairs or upstairs? Unfortunately, it stopped working while I was upstairs. This was a huge trigger for my PTSD.

Note: If you are affected by PTSD, please skip this part if you wish to.

I tried my hardest not to stress about it too much overnight and instead, waited until the morning for mum to contact someone to come out and fix it. They would be coming out, but couldn’t specify a time. Not like I can go anywhere is it?

As the hours went by, I became more on edge. I kept snapping at Ewan, I was crying a lot. It just bought back so many flashbacks of when I was bedbound in hospital. It was utterly horrible and hopefully I never experience anything like that again. A bloke eventually came out about 4pm and it took him a while to fix, but eventually I did get to go downstairs.

Save the Date!

Guess what I’ve got a date for…. well, in fact I have two dates. On the 10th August, I’m getting my new powerchair! BUT… I can’t use it until the following day, the 11th, as someone from Wheelchair Services is coming out to show me how to use it. So excited! Does anyone want to suggest a name for my new powerchair or would you rather wait until I show you it?

Articles I’ve Written This Month

  • Changing Places toilets enable me to feel like I can breathe – Changing Places

What’s Happening in August?

More physio sessions and Daisy turns 9 months old! How on earth is she nearly 1 already?? Goodness me…

I’ll be getting my new powerchair on the 10th, yay! Ooh keep on the lookout for my review of a new subscription box which has just launched – it’s stationery! I’m being sent the first box to review, but if I like it then I will pay for it thereafter. I do love stationery!

Two more guest posts in ‘The Reality of…’ series, and the next part of my experience with Personal Independence Payment will be published too. There’ll be an extra post too which will explain my plans for Undercover Superhero going forward.

Nothing else I can think of, but no doubt something will happen that’s worthy of going in my round-up!

How was your July?

Latest from the Blog

The Stationery Society Subscription Box – Seaside Themed – Review

AD – I was kindly gifted The Stationery Society’s first subscription box in exchange for a review. All thoughts are my own. If you are obsessed with stationery like me, then this subscription box is definitely for you! About The Stationery Society Lucy and Paul, who launched a small indie business ‘The Stationery Society’, have … Continue reading “The Stationery Society Subscription Box – Seaside Themed – Review”

My Experience with Personal Independence Payment… Continued

This is the second part of My Experience with Personal Independence Payment. In March 2018, I was hospitalised due to being unconscious, contracting bilateral pneumonia and it was the beginning of a very long 9 month hospital and rehabilitation stay. It wasn’t until one day during my rehabilitation stay, that me and my OT were … Continue reading “My Experience with Personal Independence Payment… Continued”

My Experience with Personal Independence Payment

I’ve been wanting to write about my experience with PIP (Personal Independence Payment) for a couple of years, however I’ve always felt hesitant as the benefit is seen very negatively online and in the media – where are all the positive stories? But sure enough, you’d find a library full of ‘horror stories’.

Another reason is that disabled people are more susceptible to judgemental opinions, such as “You’re lucky that you don’t have to work, yet you get money/a free car” and more. There is so much stigma around benefits and it shouldn’t be like this.

Before I share my experience with Personal Independence Payment, the assessments, and what the benefit enables me to do, I will explain what PIP is and what it entails.

What is Personal Independence Payment?

Personal Independence Payment (PIP) is a non-means tested benefit, this means that the amount you receive from PIP will not have any effect on other benefits that you are in receipt of. PIP provides an income for people with long-term health conditions and disabilities, that affect their ability to carry out daily activities, such as cooking, washing, communicating, etc and mobility, to help with the extra costs of living with a long-term health condition.

The benefit is split into two components: daily living and mobility/moving around. For either component, you can be awarded the standard rate or the enhanced rate. Below are a few examples of what claimants can be awarded:

  • Standard Daily Living / No Rate for Mobility
  • Standard Daily Living / Standard Mobility
  • Standard Daily Living / Enhanced Mobility
  • Enhanced Daily Living / Standard Mobility
  • Enhanced Daily Living / Enhanced Mobility

Claimants can receive one or both components, and be awarded either rate – it depends on the amount of points they score for each component.

My Experience

Note: With my first claim (2017), even though I state my conditions below, at the time of completing the form and having the assessment, I had no diagnoses and all we knew was that I had hearing loss, central vision loss, balance issues and severe fatigue – I was undergoing tests still and we could only go by what symptoms I had.

When I was dismissed from my last job (June 2017), my mum took me to our local job centre to see if they could give me any advice on what to do next. At this point, I had hearing loss, central vision loss and balance issues, but I could still walk (just). Mum answered the majority of the questions as I was still emotional from losing my job. They gave mum leaflets explaining about PIP and another benefit.

I knew of PIP before this appointment, but I didn’t understand how it worked and what happens. Firstly, mum phoned PIP on my behalf to request a form. Secondly, once I received the form I then had to complete it – although mum had to complete it on my behalf as the form was quite small and I struggled to read it. I remember the form being 30 pages long (roughly).

For each activity, such as cleaning myself, cooking, toileting, dressing, etc I had to state how my disabilities affected my ability to carry out these activities and if I needed to use any aids. For example, communicating – due to my hearing loss, I am unable to understand what people are saying to me when out and about, even more so if they don’t speak clearly or directly to me. Therefore, I always need either Ewan or my mum with me to relay what the other person is saying.

Another example would be preparing food – due to my central vision loss, I am unable to cut food when preparing, as I have misjudged the knife and my finger. Thankfully, only minor but as it was happening more often, it was a danger.

The form itself is in-depth and draining, even though I didn’t fill out my first form myself, mum did ask me the questions and I felt very overwhelmed and exhausted by the end of it, as did mum. Next, we had to send copies of supporting evidence, this was any medical reports that I had, albeit not much evidence was provided at the time as I was still undergoing tests. After we sent the form and evidence off, we had to wait for an appointment for me to be assessed.

Assessment Day

Note: My assessment wasn’t until the end of August, by which point my health had declined and my balance issues were more noticeable. We sent the form off at the end of June/beginning of July; I waited 8 weeks for my assessment.

I remember the walk to the assessment, it was a hot day and despite my balance, I tried to walk as far as I could before asking mum to help – I was struggling to breathe, I was exhausted, and I was crying because I just wanted to rest. We arrived with about 10 minutes to spare, I think. Thankfully, the waiting room was completely empty and, while having some ice cold water, I could try and get my breath back and, admittedly, have a little cry.

A lady came to meet us and we then followed her to a room, similar to an office. She tried to talk to me, but I couldn’t hear her, and I was struggling to concentrate due to fatigue. I gave mum permission to speak on my behalf, and other than mum relaying a few questions to me, I was trying my hardest not to fall asleep. I remember having to stand and look at a board on the back of the door, it had letters on and unless I used my peripheral vision, I couldn’t see what they were.

Also, while standing, the lady asked me to read from a script which had the same sentence but in different font sizes. I was struggling to read the largest font unless it was right in front of me, plus while trying to read, my balance was off and I started swaying so mum had to support me. That made me even more tired.

What mum relayed to me next, was completely unexpected and it made me emotional. She told me that the lady had talked about her dad, who was in a similar position as me, so she knew how much I wanted answers, she could see the impact that all of this had on me. When mum helped me walk back out into the waiting room to leave, the woman shook our hands but she held my hand with empathy. She was close enough that I could see she was tearful. She wished me luck with finding the answers.

I know I was very fortunate to have an assessor like her, I just wish many other claimants would have assessors like her.

To my surprise, I got my decision back in under 2 weeks, I was awarded the enhanced rates for both components, and the award length was 1 year – which I felt was very fair as I was still undergoing tests and nobody knew if there would be treatment or anything. On top of that, the amount that I would be receiving was backdated to when my claim began, totalling around £1,700.

The money massively helped with the endless travelling to and from hospital appointments, the majority of them being for London around that time, so not cheap.I was able to buy my own food, pay off a couple of debts and still have some leftover for future appointments.

But then 2018 happened which put a huge spanner in the works… the next part of my experience will be published soon.

Have you claimed PIP or a disability benefit? How has your experience been?

The Reality of Being Hard of Hearing – Guest Post by Mel

Mel talks about the unseen effects of hearing loss and coming to terms with it.

‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Mel

Mel Ashford is a freelance writer and poet from Wales, UK. She can be found posting GIFs on Twitter or poetry on Instagram. Mel is queer and lives with a tortoiseshell rescue cat and a French Bulldog puppy. 

Mel is smiling at the camera, she is surrounded by trees in the woods/a forest
Mel is smiling at the camera, she is surrounded by trees in the woods/a forest

The Unseen Effects of Hearing Loss

I wasn’t born with my hearing loss; I acquired it somehow between the age of 12 and probably 15. However, I didn’t fully come to terms with it until I was 26 and finally got that hearing test. 

My first pair of hearing aids were huge and ugly, but I loved them. I went from being determined there was nothing wrong with me to being very open. It was so much easier when people could see at a glance that I was hard-of-hearing rather than me sitting there struggling in silence. It also felt so good to own my hearing loss instead of desperately trying to hide from it. 

Now, I have much nicer hearing aids, but the emotional curve of hearing loss continues. For me, hearing loss comes with many negative emotions like depression, shame, embarrassment, low self-esteem, anxiety, fear, and dread. 

For example, not having good hearing means I worry more about driving or walking home from the pub at night. I’m still learning to drive, and it still frightens the life out of me. My instructor is constantly asking me if I heard a horn or sirens, and I didn’t hear a thing. Sirens come up on me really fast, and the very idea of driving without a supervisor terrifies me. 

Many of the negative emotions I experience because of my hearing loss are due to the way I relate to other people. Throughout my life, I’ve fallen into the trap of trying to meet everyone else’s expectations. As a hard-of-hearing woman, I often have conversations with people who expect me to function in the same way they do – for example, attempting to force me to be fully hearing when I am not. I cannot hear just because you want me to. My hearing loss can’t be changed or fixed and expecting me to hear as well as you can is offensive and hurtful. When you’re having a conversation with a hard-of-hearing person, like me, please remember that you’ll need to adapt to them, as they can’t, and shouldn’t have to, adapt to you. 

Coming to Terms

Emotionally, I find it challenging, being hard-of-hearing. It’s easy to mishear or answer the wrong question, and I still find this embarrassing. My hearing loss caused me so much shame, especially in the early days, and I’m now making more effort to shake it off. However, I still have to talk myself out of my pit about it, as I’ll still end up crying on the floor, and feeling ashamed, for mishearing someone. I don’t have the best self-esteem in the first place, and I guess I’m still coming to terms with my disability. 

The way forward for me is to start taking the pressure off myself. Going back to what I said earlier about people not expecting me to function as if I am fully hearing, I need to start doing this within myself. I need to stop trying to meet other peoples’ biologically impossible standards and remind them I need to lip-read or that I didn’t hear their words. 

I think I’m starting to learn how to live with my hearing loss, but I know I have some way to go yet.

My Favourite Superhero

My favourite superhero is Makkari, as she’s deaf. It’s really nice to see a deaf female in the Marvel world! I can’t wait for the Eternals to come out now.

Thank you so much Mel for raising awareness!

If you would like to stay up-to-date with Mel, then you can find her on Twitter, and Instagram!