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

Primark adapted bras review

Primark have launched a range of adaptive clothing which I’ve found quite exciting. There’s a few items in the range that I want to buy but I can’t afford them all in one go. So to start with I’ve just bought what I needed most which was their adaptive bras and a set of pyjamas. Today I’ll review the bras I bought.

The adaptive clothing range is only available in a small selection of stores meaning you can’t go all stores to browse the range. It’s a little annoying but I understand that the adaptive clothing range is very niche so it doesn’t make financial sense. Added to that for click and collect for the clothes is only available to select stores so you might not be able to get ahold of the clothes close by to where you live. I don’t quite understand why not all stores can offer this? I feel lucky that my local store does click and collect but going to collect the clothes is rather an ordeal. 

I bought both the bralettes and the lace plunge bra which are the two bras that Primark offer in their adaptive clothing range.

Photos from Primark

Both bras are front closing and have a magnetic closurfor myself and my PAs/carers when getting dressed and o. My usual bras I have to pull over my head so as you can imagine having something front closing has been an absolute dream. The bra’s from Primark also have given me more independence when dressing and undressing as I just need a bit of guidance to get them on but apart from that I can pretty much put them on myself and the closure is so easy to do even on days when I’m struggling with my hand function. Also with my Ehlers-Danlos my joints are very unstable so pulling my bra over my head can sometimes cause problems. However the front closing bras cause no issue at all with my shoulders.

Both bras come in two colours. Either pink or black. I got one of each colour in the bralette’s and a black lace plunge bra as I had some underwear that would go with it. With the bralette’s it would be nice to see them in in other colours such as light grey and both bras’s in white in a nude skin tone colour. There’s adaptive underwear in the Primark range so I’d have have them in these other colours too so they can co-ordinate.

I absolutely love the bralette, the only things I don’t like about them are first and foremost they aren’t padded. I’d love to see Primark add padding to these bralettes. The other thing is with tighter fitting tops the middle part where the closure is it is quite prominent and can be seen. Even on lose fitting tops you can see the magnetic closure if the top is pulled a particular way.

The lace plunge bra however is padded. Both bras’s are not wired which I like. The bralette if padded would have been the style of bra I’d normally wear. The lace bra I see as more fancy but I like it because it’s padded. 

The only problem I find with the lace plunge bra is that the lace on the strap goes quite far up so it show on some of my tops.

Another thing I found was trying to work out the size I needed. The Primark website wasn’t very helpful but eventually I found something online and found that I was an XS - I’m a 6/8 for clothes.

So in summary:

• 

  Photo from Primark

  Not are stores stock the range or offer click and collect
• I would say that on the whole the magnetic closure is very good and easy to do
• The front closure makes taking the bra on and off a lot easier 
• The adaptive bras promote independence when dressing/undressing
• I’d like both bra styles to come in more colours
• The bralette’s aren’t padded but the lace plunge bra’s are
• I’d like to see the bralette’s with padding too
• I like that both bra styles don’t come with under wiring which I like
• The lace on the that particular bra goes quite far up showing on some tops
• The sizing chart isn’t very clear on what size you need to get

Disability services: Listening libraries (updated)

For some people with a chronic illness/disability audiobooks can be more accessible for a number of reasons.

There are a number of listening libraries available free of charge to those in the UK who need to access audiobooks whether it be because of a visual impairment or a print disability. There are also ones you can subscribe to. I have listed the main listening libraries we have in the UK.

So what is a ‘Print Disability’?

My Irlen’s glasses

A print disability covers a wide range of things. 

It could mean you struggle to read print because of a specific learning disability like dyslexia. You could have Irlens Syndrome (also known as Scotopic Sensitivity). Also you don’t have a visual impairment but you struggle to read standard size or written print. 

Print disabilities also cover cognitive difficulties with reading such as poor concentration, brain fog and conditions like brain injuries. 

They also cover physical difficulties with books too. For example struggling to hold a book or turn a page due to disabilities and conditions like having a Spinal Cord Injuries, MS, arthritis, M.E., MND, Parkinson’s and more.

I also feel that Print Disability’s should include difficulty reading, using and holding e-readers as well.

Listening Books

Listening Books is “an audiobook lending charity for those that find their illness, mental health, physical or learning disability affects their ability to read the printed word or hold a book.”

Their books can be accessed through their website or through the Libby audiobook library app.

Magazines and newspapers can also be accessed.

To qualify for Listening Books you must have a disability, illness, learning disability or mental health condition that impacts your ability to read or hold a book.

Membership costs £25 for the year. When you sign up there is a long list of medical conditions and you can select your conditions to be eligible to join. 

If there is a title Listening Books doesn’t have that you’d like to listen to you can contact them and if they can buy the book they will add it to the library. This is something that I have done before.

BorrowBox

BorrowBox is a library in one app, from it; from it audiobooks and eBooks can be borrowed.

It’s a free service some local libraries now use to allow members to access digital content. You can check with your local library to see if they’re using BorrowBox.

Link to BorrowBox: Find out if your local library is using this service.

RNIB Reading Services

RNIB Reading Services is open only to those who are blind, partially sighted or has a print or physical impairment that prevents them from reading standard print.

Their Reading Service is available in a number of different formats. There is a link between Amazon’s Alexa and RNIB’s talking books. They also offer books in braille and now a new service e-Braille. Books can also be loaned on Daisy CD’s and USB. They also have a library of books through the Dolphin EasyReader app audiobook library.

As well as books magazines and newspapers can also be accessed on audio.

Calibre Audio

Calibre Audio is a “a UK-based charity providing a audiobook lending service for people with a print disability.”

“Who can join… We support anyone unable to see, read, or comprehend printed text due to difficulty or inability. This can include:

• A specific learning difficulty such as dyslexia 
• A brain injury or cognitive impairment such as head trauma or stroke
• A visual impairment or blindness 
• Physical dexterity problems, such as Parkinson’s disease, arthritis, MND
• Learn more on who can join
  

For those over 25 the fee is £3 a month or £30 for the year. For those using the USB stick service for books or those under 25 the service is free.

Calibre Audio uses to Dolphin EasyReader app or the Libby app, streaming through their website, USB stick, and through the Synapptic software used by those with visual impairments. 

Link to Calibre Audio

Audible

This is a well known listening library. I often find Audible has titles other listening libraries don’t have and some audiobooks are exclusive to Audible.

There are different subscription levels each with different benefits. You can pay monthly or yearly. Often there are offers to get Audible for free or at a reduced rate. You can also buy more credits to buy books. Sometimes there are 2 for 1 offers too, so you can on selected titles get two books for one credit.

Link to Audible

Kindle Unlimited

You don’t need a Kindle to access Kindle Unlimited. You can download the free Kindle app onto your phone or table too (both Apple Store and Android). Kindle Unlimited offers unlimited access to a wide range of ebooks, with quite a wide selection that come with audio which you can listen to via Audible without paying for Audible. You can choose to do a mixture of reading and listening or you can purely listen to the book if you wish.

You do have to pay for Kindle Unlimited but there are often offers such as free trials of the service.

Link to Amazon Unlimited: if you sign in you can view what offers they have available which may include a free trial.

Everand

This listening library has now changed since the last time I used it. It now operates similar to Audible with different levels of membership all at different fees and each with different benefits. I do think this is a bit of a shame as before you just paid one subscription fee and it gave you access to unlimited audiobooks and ebooks. There is however an offer for 30 days free subscription if you wanted to take advantage of Everand for 30 and listen to what they have on offer for that free month.

Link to Everand

Polite Notice

I have made it clear who is eligible for certain listening libraries. Please only sign up if you meet the eligibility criteria for that service; not just because you want to access free audiobooks. By kindly following this criteria you allow that charity to provide a service free of charge and grow their service to those they provide for.

Thank you.

M.E. and my Genetics - Decode ME Study results

Back in October 2023 I wrote a post about the Decode ME Study. It surveyed people with a diagnosis of M.E./CFS and then from there individuals like myself were selected and asked to donate a DNA sample to contribute to the overall study. 

The aim was to see if M.E. had any genetic links which, with further studies and research could find more effective ways to understand, diagnose and treat M.E. in a more scientific and medicalised way. Currently M.E. is diagnosed based on the symptoms reported meaning other conditions could be missed or a person may be misdiagnosed. Also because of the distinct lack of funding into research in M.E. (The Decode M.E. Study is the biggest of it’s kind), M.E. is poorly understood in terms of how it affects individuals and why we experience the symptoms that we do. This means there is no clear way on how to treat M.E. and clinicians especially those who don’t specialise in treating M.E. like GP’s have no clear way on how best to care for a patient with M.E. Plus with symptoms currently only being self-reported it’s difficult for GP’s when it comes to issues such as prescribing medications. GP’s are also most likely to be the primary doctor for a person with M.E. as getting into specialist M.E. services can be difficult.

Well, the Decode M.E. results are in and the main findings really surprised me but also gave me hope and also me me feel heard and believed. I wanted to take them running to my GP and other doctors and a say ‘see its real I’m not making it up’ especially to try and stay on some of my medications that help me manage the severity of my symptoms.

The results of Decode M.E.

So firstly which surprised me the most my genes contribute to my chances of developing M.E.! - So like the the infection (we’ll come to that part) - for many people like myself an infection triggered their M.E. - this then turned on that genetic switch inside me and caused me to develop M.E. (That’s how I picture genetic contributions).

Those with a diagnoses of M.E. have significant differences in their DNA compared to the general population. 

Eight genetic signals have been identified. As our DNA doesn’t change the onset of a person’s M.E. reflect causes rather than effect of M.E.

The signals discovered are involved in the immune and nervous systems indicating immunological and neurological causes.  - For me my M.E.has always presented as neuro-immune with its symptoms like how my immune system falls apart when I’m exhausted along with wide ranging multi systemic symptoms as well.

At least two of the signals found relate to the body’s response to fight off infection. - Like I mentioned above M.E. for many is caused by an infection, often viral. For me it was the flu which lead to a bad chest infection. I also find that I find it harder to recover from illnesses. During the pandemic I was so scared because of this too.

Other signals found point towards the nervous system. One of which researchers previously had found that in people experiencing chronic pain which reinforces neurological contributions to M.E. - For me this validates my pain. When doctors don’t understand why I’m in pain and want to reduce my medication I want to wave this at them and say ‘My M.E. is genetic and it has signals to my nervous system which is why my whole body is in pain and I feel different types of pain. See it’s real it’s not all in my head! Please don’t leave me in pain!’

The signals found align with how people with M.E described their illness.

Source: Action for M.E - For more on the results of Decode ME click here to go to the study’s website.

 

My trial of Loop Wheels

Out with my Loop Wheels

I recently did a trial of some Loop Wheels. 

One thing I regret I not taking any photos while I had them for you to see them better in this review and just for me to look back on. 

I tried the Loop Wheels Urban and I was offered to extend my trial and try the LT wheels instead but I turned the offer down as I didn’t see the benefit at the time. (My reasons why below in this review).

What is really good of Loop Wheels is to UK customers they offer a free trial of the wheels. You get about 2 weeks use of the wheels and all you have to pay for is the delivery which is £35.

I initially went for the Urban wheels as I was guided to them on the ‘Help me choose’ feature of the website as I was going to be using my Loop Wheels with my Batec. That was the whole reason why I was interested in Loop Wheels. They’re a suspension wheel and I thought they’d really benefit me when riding my Batec so I’m being jolted around less which would offer me more comfort and relive my pain especially when going up and down curbs and difficult paths and tactical paving etc. However I personally found that I didn’t get the high suspension relief that I was expecting. I felt some suspension but not much difference to what I get with my Spinergy wheels.

The pink in the photo on the Loop Wheels is my old push rim covers that I put on them as I find the small standard push rims difficult so it was handy that I still had them. Loop Wheels do offer a variety of push rims including the CarboLife push rims with and without Gekko grip. I have the CarboLife L Gekko grip push rims on my GTM chair that I’d highly recommend if you’re going to buy Loop Wheels for every day use.

When I contacted Loop Wheels about the lack of suspension they were really helpful and I explained I used their feature to tell me what Loop Wheels I needed. They explained that for my weight I’d need the LT wheels instead and they can also be used with power add-ons. They did apologise that this wasn’t made clear and the lady explained I’d need the light suspension.

The reason I didn’t try the LT wheels was because I found the Urban wheels quite heavy and the LT wheels were only slightly lighter in weight. I struggled and needed my PA to help me put the Loop Wheels onto my chair every time I wanted to go out on my Batec as my everyday wheels are my Spinergy wheels. I’d still need help with the LT wheels as they still weighed quite a bit. So changing the wheels just for Batec rides was quite a faff. Plus the suspension on the LT Loop Wheels was only slightly more than the Urban wheels. Part of me now though wishes I had gone and tried the LT wheels just to see and try out the suspension but I know that I can always in the future do the £35 trial if I do decide I want to try them out.

I personally felt that the cost of getting the LT Loop Wheels was quite an expense especially considering I was only going to be using them for Batec rides. With a lot of thought I decided to leave the idea of getting Loop Wheels for now and use the money on other things.

In summary:

Pros & Cons

Pros

• Loop Wheels do look amazing
• The trial of the Loop Wheels is a great way to help you decide if they’re for you or not including what wheels are for you (as I found for myself)
• There is a verity of push rim and colour options (alongside the black)
• They have a very of wheels to suite your needs
• The staff are friendly and helpful when you call or email them (I called twice as well as emailed them and the staff were helpful and knowledgeable and eager to help)
• I didn’t feel like it was a push for a sale; they more wanted to let me try out the wheels to get an idea of which ones were best for me.

Cons:

• They are quite expensive wheels - think about if these will be your  everyday wheels or just for riding with a power add-on
• The push rims and coloured Loop Wheels come at additional costs, so consider how much they will cost you in total with all the options you want
• The wheels weigh quite a lot more, especially compared to my lightweight Spinergy wheels 
• I found it difficult to change the wheels partly because of the weight and also as the Loop Wheels didn’t have an axel pin
• I found little suspension given to me in the Urban wheels - not what I was expecting from what I’d heard about these high suspension Loop Wheels
• The standard push rims aren’t that great (hence me putting on my old push rim covers)
• To switch my every day wheels to Loop Wheels plus add the CarboLife L push rims and Gekko grip would be very costly. 
• I felt quite disappointed with the Loop Wheels in all honestly 

Making reading accessible

For me I love books but having both dyslexia and Irlens (also called Scotopic Sensitivity) reading can be a challenge.

There are many ways I’ve now made reading accessible to allow me to enjoy books. Here are the main things that have made reading and accessing books easier for me:

1. Audiobooks 

My current book

I used to love books and reading and then when I fell ill in 2013 I began to struggle to read and then I just stopped reading. Discovering audiobooks  opened up the world of books again to me and I fell back in love with them. To me listening to a book is still “reading’ just in a different way that is more accessible for some people.

At first I had a volunteer from my local library bring me audiobooks on CD but I found my library lacked audiobooks for young adults. Now my local library uses a free listening library app. I also used to get CD’s from RNIB before they moved over to using a listening library too.

Having dyslexia and Irlens also makes reading difficult for me and audiobooks is my way around that to make reading more accessible. Plus having a ‘print disability’ it gave me access to some free listening libraries so I could access listening libraries for free.

Earlier in the year in my Disability Services series I wrote about what a print disability is and about the free listening libraries there are that people in the UK may be able to access.

2. My Kindle

How I read on my Kindle

Ever since I got my Kindle I’ve found is so much more easier to read books. Before I struggled with the small text, often using the magnifier on my iPhone as was as using my overlays. So you can imagine the difficulty reading a book!

My Kindle is so lightweight in my lap compared to a book and pressing the screen to turn the page is so much easier. It can be difficult to hold though at times so I mount my Kindle onto my Flexzi stand that is attached to my bed so I can read more easily along with my reading accessible gadget, (more below).

I love that on my Kindle I’ve been able to make the text settings just right for me to make reading accessible. I’ve chosen a font I find easy to read, I’ve made it quite bold too. I’ve also spread out the line spacing and the spacing between paragraphs. I even sometimes enlarge the text when I’m struggling but still want to read. There are other settings too that collectively have truly made reading accessible for me.

Another feature on the Kindle that makes reading accessible for me with my dyslexia is being able to press on a word and get its dictionary definition.

3. My page turner remote

To go with my Kindle I bought this little gadget. It’s a remote control to turn the page on my Kindle. 

The two parts pair together. One part clips to the screen of my Kindle and then there is the remote control. It’s a nice size and the button is big.

The only downside is there is no button to go back a page but when looking for this device I couldn’t find a device with this feature. I do like that this one is white as opposed to black.

It’s definitely has made reading more accessible for me.

I especially use it when I’m having to be reclined or laid flat in bed. It means I can read in this position in bed. I attach my Kindle to my Flexzi stand on my bed. It means I can position my Kindle comfortably and then turn the page with the remote comfortably, easily and accessibly read.

4. My Flexzi stand

My Flexzi stand* attaches to the bar on my bed. It can also be clamped onto other bars like my wheelchair or flat surfaces like a table. I love that it’s pink too. Lots of things can be mounted on it, my iPad, mobile phone and now my Kindle. All I’ve had to do is put a Velcro patch on the back of my Kindle case.

It really helps makes reading accessible as when I mount my Kindle onto it I can read hands-free when holding my Kindle is difficult. I can also then use my page turner remote too to make reading easier so I don’t have to press the page myself depending on what position I’m sat in. 

It also helps when I’m having to lay in bed reclined, tilted, or laid flat as I can position my Flexzi in a way that is comfortable for reading and it enables me to read my Kindle with ease.

*link to a review of it here

5. My Irlens glasses 

I have Irlens, also known as Scotopic Sensitivity. The colour for people with Irlens varies from person-to-person. For me it’s a blue-purple colour. I’ve used overlays but I find them very cumbersome especially as I have to use a combination of two overlays so now I’ve just received my glasss I find them much easier. I also find glasses more universal such as for working on my iPad and for looking at might Kindle as well as for reading. 

I find having Irlens glasses makes reading accessible as I can use them to read my Kindle where I’ve altered the text to make reading easier and accessible. Plus looking through my Irlens glassess means the text doesn’t move around on the page as this is what it is like to have Irlens.

My Irlens glasses 

* Read about Irlens here

(My glasses look more blue as the dark blue was the dominant colour so you can’t tell that there is two purple shades in them as well.)

6. Overlays and reading rulers

These act as an alternative to my Irlens glasses and both act slightly differently.

The overlays colour the page for me making reading the page easier for me.The overlays I have at the moment are two lilac ones.

My reading ruler I have in blue as I couldn’t get a purple one. My reading ruler helps make reading accessible for me as it helps me read text line-by-line.

 

7. Headphones

The final thing that I find makes reading accessible to me is my different headphones.

The first from the top photo is my headband headphones. I found out about these from a YouTube video by Hannah Hodgson (who does great book reviews and she’s helped me find some great reads). Anyway back to my headband. I find these great when I’m wanting or needing to lay on my side in bed and my usual headphones I can’t wear. They have small ear pieces either side which are small and comfortable. You on the front of the headband is a play/pause button and also volume up and down buttons. The headband is paired with my phone via Bluetooth so I can play/pause and alter the volume on my phone to the headband too.

The second thing photographed below is very similar but it’s an eye mask with headphones inside. I do find this one more cushioned and obviously more comfortable for sleep. It has the same controls and as with the headband is connected via Bluetooth so can be controlled on my phone too. I obviously use this one more for listening to books at night or for resting during the day or bad M.E. days when I’m struggling to tolerate the light.

Next are my noise cancelling headphones and AirPods.

I like my Apple AirPods as they connect really well to my iPhone and iPad. The noise cancellation is also great and I like the feature where if I talk it automatically picks it up and pauses until I’ve stopped talking. They’re also nice and portable to take them anywhere with me so I can access audiobooks on the go making them accessible to me.

Sometimes I don’t always like something in my ears so I like my headphones as an alternative. I really do find head phones make reading, i.e. audiobooks accessible to me. I find having something over my ears comforting and I find the noise cancellation blocking out the background noise really helps with my anxiety. I find they also help me too with my brain fog to be able to concentrate on my book more, making my audiobooks more accessible to me.

I have two pairs of headphones so I always have a pair available to me. My lilac ones especially fold down flat so I can easily put them into my rucksack when I’m going out. I wear my headphones around my bungalow and when laid in bed too so I can listen to my audiobooks.

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).

Book review: ‘The Secret Doctor’ by Dr Max Skittle

How I rated this book: ★ ★ ★ ★ ★ = 5/5!

I haven’t done a book review in quite a while so I thought I’d review one of the latest books I’ve just finished. I listened to this book on Listening Books - you can see my post about free listening libraries here.

Dr Max Skittle is a pseudonym hence the title ‘The Secret Doctor’. Max implies he’s a male doctor and throughout the book he is a male doctor with a wife but who knows Max could be short for Maxine so I won’t assume the author is male or female as I really don’t know.

The book follows the year in the life an inner city GP (General Practitioner) in the UK. The book is in the form of a diary and the author writes about his day to day work and family life. It was quite a humerus book and I enjoyed the funny stories and inner thoughts the author had about their patients. It made me wonder what my GP thinks and makes of me.

For confidentiality the author obviously had to change details about his patients but it was still really interesting and funny, especially some of his regular patients written about or some of the cases that he saw.

As well as the year long diary the author also wrote about their journey into becoming a GP. Deciding to study medicine then medical school. Then the different levels of training and the placements they did once they’d graduated from medical school. Then their decision to become a GP, and their training to become a GP. In all of that are stories of patients and their life. It was quite interesting to hear about all of their training and education and the different specialties they had to experience. I already knew quite a lot but it made me appreciate how throughly experienced UK doctors are and with GP’s the different specialities they have to experience to qualify. So in reality they do have some experience in different specialities despite in their job as a GP dealing with anything and everything.

Another aspect of the book that was interesting was when the author worked as a private GP. It was interesting and sometimes funny the clients he saw when briefly working that particular job. Plus how sometimes money comes before medicine in private healthcare.

The author also writes ongoing in his diary about his home life too with his wife who is pregnant who gave birth to a baby over course of the year in the book. It was funny reading some of the things he wrote about his child, like observations about what babies do and the time they panic bought every type of thermometer there is at the pharmacy. It was also lovely to hear the love the author has for their child and partner in the book too.

At the end of the book the author also gave a really good overview of the COVID pandemic and the effect this had on them as a GP and also wider on the UK’s National Health Service and also on a more global scale. He gave a good tribute to key workers in the UK and those who had to shield because of their vulnerability to COVID and the effects lockdown had on country as a whole. It was interesting to hear how the author had to work as a GP during pandemic and how things changed such as what patients were making appointments for during the pandemic.

As you probably guessed from the rating I gave this book I throughly enjoyed it and would highly recommend it. 

I do quite like books that are true life accounts of different people’s life’s and professions from healthcare workers in all settings including one book the was a doctor who worked at an airport, prison staff including prison teachers, showbiz reporters, taxi drivers, police officers and more. It’s a book genre I find quite interesting among other book genres.

‘The Secret Doctor’ was previously titled ‘The Secret GP’ so if you’re looking for it you may need to search for it under this title (it’s titled this on Amazon). It is also available on Audible if you want to listen to it, but do check out Listening Books and see if you’re eligible to join. As well it’s also available to buy on Kindle and as a physical copy.

It’s my birthday!

So this week I turned 32 (though still people think I’m in my 20’s).

Every year feels like something I’m grateful for because of my health and disabilities. It also brings some sadness that I’m still in this situation with my health and I’m not out there doing the dream things I wish I’d rather be able to do. However I’m still so hugely grateful for many things though and this is what I try to focus on around the time of my birthday.

Making pancakes!

I try to make my birthday as special as possible with lots of little acts of self-care. Like when I had my bath I used my favourite skincare products and gave myself a mini facial. I also got out my favourite Lush Snow Fairy shower gel. I put on some makeup too which always makes me feel brighter. For my tea I decided I wanted pancakes as a treat. I wanted to be in on the action so I made the mixture myself and helped my PA make them. (Unfortunately I enjoyed them too much to take a photo of them!)

I received some lovely and very thoughtful cards gifts from family, friends and my PAs. This really made my day and filled me with love and gratitude to see people knowing me so well and just the kindness that went into choosing or making things for me. Knowing I love my garden, handmade gifts, my need for low-energy activities, that I love crafts Moomins and pjs,, a voucher towards a facial or something and lots of other lovely things. It’s lovely to look at my cards too that I’ve put up and know that people have wanted to send me a card to celebrate my birthday.

As well on another day I went to my Dad’s and stepmum’s and the three of us ate tea and played a game which is something we collectively enjoy doing together. I won the game which really surprised me as normally I don’t win at games.

So yes birthdays can bring difficult emotions for me. Difficult memories and thoughts of more illness ahead of me especially at the moment as I’m living with undiagnosed symptoms that I can’t get answers for that are really affecting me and not knowing the outcome. However on the bright side my 32rd year has so many positives. 

• I have my own home that is amazing both inside and outside; quite literally, as Dad has made my garden so lovely for me.
• I now have a wheelchair that meets my needs and my Batec that gives me freedom and independence. 
• I have some amazing friends and pen pals. 
• I have an amazing family. 
• I have a new amazing PA now so my care situation has really improved. Hopefully in my 32nd year I’ll get a full PA team - how amazing would that be! 
• I’m also now under a specialist M.E. team at UCLH (my first appointment is in October and I was only referred in February!) Maybe I’ll also from them start to get answers or referrals to get closer to working out my undiagnosed symptoms.
• I’m doing really well at my declutterring and organising of my home plus my no spend project I start this year. I also want to start a project pan too at some point too!

That’s quite a list of positives! There are so many reasons to be happy this year going forward despite the difficulties and everything. Focusing on the positives help get me through the difficult times. I’m not one of those people who lets my health beat me down no matter how bad things get. Yes sometimes I have a bit of a cry but don’t we all, illness or no illness. We all have things in our live that challenge us.

Birthday’s are a time of the year where we can look back on the year we’ve just had. We can see how far we’ve come, what we’ve accomplished and survived etc. and what we have to come in the year ahead both positive and challenging. Just deal with one day at a time and remember to breathe. Embrace every day as it’s a gift as we never know what is to come.

I’ve done pen palling for many years now. It was something I started when I became chronically ill. It became a hobby for me to do as well as reach out to other young people who a few also had chronic health problems or disabilities, others just enjoyed putting pen to paper.

I think I started out buy joining a a Facebook group called LettersOfLove run by Jenny who just wanted a group where people can write to one another without the pressure of having to become pen pals and exchange letters back and forth. I made a few pen pals through that group one I still write to now and I’m still in touch with Jenny. However the group fizzled out as only a couple of members of the group were actively mailing and not receiving much mail in return from inactive members.

I’ve had some negative pen pals in the past but when that happens I just stop writing, the same goes for people where I just don’t feel a compatibility. I’d rather have a positive group of people that I enjoy mailing to.

I’m now in a place where I have a really good group of pen pals. Some people I write to back and forth others we’ll just occasionally exchange mail.

I write all over the world: Switzerland, Germany, Canada, USA and New Zealand as well as the UK. So I do get to see some interesting stamps which I like to collect.

Why mail is so important to me

Mail is so important to me as it gives me a connection to other people. I’m unable to socialise in person and I experience a lot of loneliness and isolation. I also don’t have any friends in person which adds to those feelings. I only really see my carers/PAs and nurses and close family which definitely isn’t the same as hanging out with friends in person. My only interaction with friends is digital messaging like WhatsApp or Instagram alongside letters.

As well as wanting to connect with other people I also want to connect with other young people with chronic illnesses/disabilities. I’d love to meet up with others in real life but for now letters will do. I find it really helpful through letters to share that lived experience of illness and disability and how we live with and cope with our health problems and share ideas such as aids we find helpful or discussing pretty mobility aids and so much more. I like to talk about chronic illness and disability all in a positive way and I find that with the pen pals I have. We also have that balance where we also talk about everyday things too. Things like books, craftings, days out, pets, organising, baking etc. as our health problems aren’t the sum total of who we are. So writing about health and non-health things I find is a good healthy balance. But connecting with other chronically ill/disabled people in a positive way makes me feel like I’m not alone in what I’m dealing with with my own chronic illnesses and disabilities and also what I’m still trying to find answers for. It’s comforting in a way knowing that there’s others out there and also comforting knowing that there’s people that want to take the time to send me mail, whether it be a regular exchange of mail or us occasionally exchanging mail to one another. It’s that kindness of people that means a lot to me.

I have a fantastic group of pen pal now. Some I exchange letters with back and forth others we’ll exchange mail to each other periodically with no obligation to write back. What I also love about my pen pal group is how patient and understanding they are at how slow I am at replying to letters because of my health conditions. They also don’t mind how much or how little I write as they know that that’s all I’m able to do that moment in time to reach out to them. That also works vice versa. I give my pen pals however much time they need to write back due to health, life, work etc. and I also know that however much they’ve written is all they’re able to do that time and I totally understand and appreciate that they’re given me their all. What matters to me most is just receiving that postcode, card or letter and the thought, time and kindness that’s gone into that.

When I write a letter to someone I feel like I’m talking to the person I’m writing to and that gives me that closeness to my pen pals. There’s always something to write about. My life isn’t overly exciting but I can write about my current books and craft projects and my garden at this time of year plus maybe disability things too depending on who I’m writing to. I also love asking my pen pals lots of things too. I also get so much enjoyment out of creating unique mail. Never once have I sent two pieces of mail alike. Sometimes I’ll create a card, other times a letter or occasionally I’ll send a postcard. I love finding and sending novelty shaped postcards; the last one I sent was shaped like a rainbow. I love doing envelope art too and creating lovely cards or pockets for additional pages and stickers. I’m in awe of some of the pen pal creations I see on YouTube and Pinterest which I try to recreate as best I can at times.

It’s lovely to read about what a pen pal has been up to like what they bought on a shopping trip, or their day out at a craft expo, or what they’re currently reading, listening to or making. Other things too like about their job if they have one and how awful their team manager is and a running saga with that. Plus other things like hobbies they’re into like one of my pen pals loves visiting bothies and sometimes writes letters to me on retro computers or on a typewriter. Pen pals will tell me about their favourite holiday places to visit, or in each letter will give me a running commentary about what naughty things their dog has been up to since the last letter. There is just so much that can be written about that I love to read; it takes me into a bubble away from everything. It makes me feel like I’m with that person as I’m reading their letter which is really lovely and it lifts that loneliness I feel a lot of the time.

One day when I’m well enough to travel I’d love to go and meet some of my UK pen pals. (I think travelling internationally to meet my international pen pals would be a bit too much just yet.)

It’s lovely to see something pretty come through the letter box among boring white and brown envelopes containing medical appointments, council tax and water bill mail. Especially on a day when I’m struggling either with physical symptoms or my mental health, it really does brighten my day. It also reminds me that people are thinking of me and that I’m not alone and people do want to take the time to write to me. It’s lovely to see the postcard. Or with letters how they’ve decorated the envelope, the writing paper they’ve used or how they decorated the paper. As well it’s always kind if extras have been included like sheets of writing paper for me to use, stickers, funky post-it notes and paper clips, mini activities like a question sheet, something to colour in, a wordsearch or suduko page. With cards it’s lovely to see what card my friend has bought for me. I have one friend who always buys very ‘me’ cards. I also love seeing handmade creations too.

When I lived at my Dad’s I had a giant notice board with lots of novelty push pins to display my pen pal mail. I really missed that when I moved into my bungalow as it was too big to put up here. Then just this Christmas gone I got some fairy lights with pegs to display cards and little bits that are included inside. I love this as I love fairy lights so it’s a great way to display my mail. (Fairy lights are perfect as I love soft lighting and with my M.E. I can cope much better with lighting like fairy lights especially as I can dim these peg fairy lights.)

Another reason why mail means a lot to me is I like to have my mail to look at in my room as it reminds me of who has sent me what. My most special mail I have where I can see it from my bed most easily and my peg lights go behind my bed. I can look at everything pegged up and know who it is from. Looking at my pen pal mail reminds me of the love put into that card and how loved I am by people and the kindness of people and how grateful I am for everyone who has ever sent me something. It really brightens me up to look at it especially when I’m struggling on my bad days. This really means a lot to me as when I’m at my worst with my M.E. and not being able to get out of bed or move, or when my pain is so bad or other symptoms are keeping me bed bound it’s lovely to have something uplifting to look at that reminds me that I’m not alone and that there are lots of people in the the world that care about me and think of me and that no matter how alone I feel I’m not alone.

So that is all of why mail is so important to me. It is so much more than simply a card in the mail.

Cards2Warriors

My tea mail

I also wanted to give a shout out to Cards2Warriors. 

They are an amazing organisation based in the USA but support people all over the world. They’re amazing volunteers have really supported me over by sending me cards of support. This really means a lot when you’re dealing a lot with your living with conditions like severe M.E. 

I’ve also received cards from school project volunteers in the USA who participate for extra credit. This also really means a lot to me that they give up their own time to make cards and write to me.

Receiving mail from Cards2Warrriors reminds me that lots of other people are thinking of me and wanting to show me support. 

I also won their tea mail competition and received a stash of Taylor’s peppermint tea which I really enjoyed.

My experience of EDS and physiotherapy - EDS Awareness Month

Navigating physiotherapy when you have Ehlers-Danlos Syndrome or and other hypermobility disorders can be difficult.

EDS is basically a hereditary connective tissue disorder. There are thirteen types, hypermobile EDS being one of them (this is the type I have with a few traits of vascular). EDS is a rare condition and it affects everyone differently in terms of severity and symptoms. This includes what secondary conditions that person may develop as a result of their EDS. Connective tissue supports organs and holds parts of your body in place. Connective tissue is made of two proteins: collagen and elastin. In EDS it affects the production of collagen in the body.

 The problems my EDS causes me when it comes to physiotherapy is that I have to be mindful and careful to avoid causing a joint to sublux (partially dislocating) or to fully dislocate.

There’s an EDS joke ‘my joints go out more than I do!’

The other problem my EDS causes, which is secondary to my EDS is dysautonomia which is problems with my body’s autonomic functions. Anything from temperature control to heart rate. One dysautonomia condition I have is POTS (Postural Orthostatic Tachycardia Syndrome) - about POTS. So because of my POTS and dysautonomia my heart rate can get abnormally high, I can also easily get dizzy and lightheaded brought on by the exertion of doing my physio. Even though it’s not strenuous exercise it is for me especially in combination with my M.E.

In the past I’ve had specific EDS physiotherapy other times I’ve just have physio that is rhumatology, for chronic pain or just generic. (Yes I’ve had lots of physio over my lifetime!)

Sometimes it can be helpful to speak with your physiotherapist about EDS so they understand it better so they can know best how to treat you especially if they’ve had no experience of EDS before.

Some of the things I do to mange my EDS when doing my physio is:

• Doing my physio laid down either in bed or on a yoga mat.
• I’m unable to do strenuous exercise so doing gentle movements work really well for my EDS. I do this guided by a physiotherapist who has given me exercises she knows I’m able to do.
• Listening to my body is key, if I feel I’m going too far I stop before I sublux or dislocate.
• I find doing a few movements two or three times a day is better than one big session.
• Keeping an eye on my heart rate is really important. If I feel my heart rate getting too high or I feel dizzy I’ll stop. I might check it just to be safe especially if I’m also feeling dizzy. If needed I’ll lay down with my legs elevated until I feel safe enough to sit up and get into my wheelchair. This is one reason why doing my physio in bed or on the floor is safer.
• I’d also ensure I have my phone with me and I’m wearing my CareLink just in case I become unwell or need medical help.
• Having water with me I find is helpful too.
• I also do my physio at times of day when my EDS symptoms are most stable.

I find it important to keep up doing my physio every day even on my not-so-great days. On those days I’ll just do a couple of reps of a couple of really gentle movements. Then on my better days I’ll aim to do more of what I’m able to do. I find keeping it up everyday helps to keep my body moving and keep my body in good condition. It also helps keep up the progress I’m making too.

Other things physiotherapists have done for me and my EDS in the past is have been to fit me with orthotics to go in my shoes. My EDS causes me to be very flat footed, a common problem for people with EDS. My shoe orthotics help correct this and in turn I’ve found they really relieve my knee and hip pain.

My CMC thumb brace

Physiotherapist’s and specialist orthotist’s have fitted me with other splints and braces for various parts of my body (I now have quite a collection of them!). From CMC thumb braces for both hands, splints for both left and right wrist plus one that also splints my thumb, a hinged knee brace, a patella brace and an elbow brace!

I’ve also been advised on other splints particularly ring splints but I haven’t gotten around to measuring my fingers and purchasing them. The physio who advised me to get them couldn’t get me referred to be fitted for ring splints on the NHS, she just advised me to get them from somewhere like Etsy and named a few shops on Etsy and other online shops to me. I haven’t gotten round to buying them yet mostly due to having to get the precious measurements of my fingers for ordering them and trying to find the lowest cost but good quality one. Silver ring splints are better but quite expensive especially when I need to buy a few even though I know they’ll benefit me.

Also with EDS and splints and braces the question is when to splint and brace and when not to. I’ve had some orthotist’s advice me to wear my brace all the time like when he fitted my knee brace. The problem is though is when you brace the joint becomes weaker as it’s being supported. Some professionals tell me just to splint and brace when needed. Generally for me there are some braces I usually wear all the time like my CMC thumb braces because of how lax my thumb joint is and how often those joints sublux and dislocate. Probably because I use my hands so much like writing and pushing my chair. Other splints and braces I’ll just wear when needed like after a dislocation, or if a joint feels weak or painful and needs some additional support. I’ll also put a splint or brace on if I’m going to be doing a particular task where I know the joint needs to be supported to help avoid injury like a subluxation or dislocation or to help reduce pain and strain.

Blue is better than beige!

Some braces and splits over the I've have to replace myself as they’ve worn out or I just can’t get on the NHS. On these occasions if the option is there I like to opt for something a bit jazzier than NHS greyige. (Most NHS things are grey or beige.) In my view if you have to wear it you may as well let it express who you are just like I do with my mobility aids.

I also use mobility aids partly because of my EDS so physiotherapist’s have ensured that they fit me correctly especially as I’ve always bought my own funkier looking walking stick and crutches than the boring grey NHS ones. It was actually one of my physios who suggested I switch from using a walking stick to a crutch for more stability and support. From there a physio moved me onto walking with two crutches as my mobility declined. My latest physio could see me in my wheelchair and how much that benefitted me. So physiotherapist’s have been really key for me when it comes to my use of mobility aids over the years.

Links

• The Ehlers-Danlos Society - Physical Therapy
  
• Hypermobility splint leaflet
  
• POTS UK