• Fog Of The Brain

    Two cartoon ghosts who have blank expressions. In the middle of them is a caption that reads, 'fog of the brain'
    Fog of the brain

    So it’s been a hot minute since we last spoke and a lot has happened in that time. Don’t worry though this is a completely C word free newsletter! (A rarity in this day and age!!)

    Over on the ‘Gram I have been speaking about the ways in which brain fog affects me and the shame that I feel with that. Some of you might not know (or you suspect from my terrible spelling) that I am heavily dyslexic. So much so that I couldn’t read or write properly till I was 7. With that there comes a certain level of shame, having been told for many years that I wasn’t as intelligent as other kids (which is completely wrong BTW).

    (more…)

    Read More

  • Inappropriate Questions

    there is a speech bubble saying 'what's wrong with asking?' a cartoon mouse is shrieking in despair 'where do I even start?' and the caption says 'inappropriate questions'
    Inappropriate Questions

    AAAAAARGH inappropriate questions! Where do I even start?

    We get them day in and day out and the worst part is always that the askee never understands why it isn’t ok. Sometimes we are too tired to educate people, others we just don’t have the time but how do we get this information across so we stop butting up against this? 

    It’s no secret that my personal opinion is representation. Books, TV and media are an excellent gateway for people to learn about experiences different from their own but having worked in the TV industry I also know the uphill battle that we still have to fight. 

    (more…)

    Read More

  • I’m Just A Girl Looking At Her Medication Asking It To Work

    A cartoon blonde haired woman is wistfully staring at a caption that says 'I'm just a girl looking at her medication ask it to work'
    I'm just a girl looking at her medication asking it to work

    Oh medication, having been around free range humans (aka those who are not housebound by chronic illness) I’ve been reminded of how much they cling to the idea that medication can fix everything. That when you get sick the doctor’s hand you pills that magically make it all ok again. 

    Any one who’s been chronically ill for more than a hot minute will tell you this is not the case. That medications come with their own issues and some of them are indistinguishable to the symptoms you are already experiencing, so you are never sure if they are helping or hindering.

    (more…)

    Read More

  • Caption This

    Two angry red cartoon devil's with wings are pointing at a caption that says, 'caption this'
    Caption this

    WHY IS ACCESSIBILITY ALWAYS LEFT TO THOSE THAT DON’T HAVE THE ENERGY TO DO IT???

    If you haven’t been watching my stories you won’t yet of seen caption gate. While making my first IGTV video I came up against issues that those from the disabled community always face. Access it seems is something only we care about and massive companies couldn’t give a flying fuck which means that all the labor falls on people who really don’t have the energy for it. 

    (more…)

    Read More

  • The First Rule of Pain Club is We Don’t Talk About Pain

    A cartoon zombie with it's arm falling off and green gas coming from it's mouth is standing next to a caption that reads, 'the first rule of pain club is we don't talk about pain'
    The first rule of pain club is we don't talk about pain

    I am breaking the cardinal rule of pain club and I am actually going to talk about pain.

    It was only the other day, when I was talking with a fellow spoonie friend that I realised to some extent we all actively avoid talking about our pain.

    I think in the beginning it’s about not creating too much fuss or even just not really knowing how to handle the amount of pain you are in. But as time goes on I find myself talking about it less and less. It’s not for fear of my network, I have some incredible support both online and offline. It’s more a fear of admitting how bad it really is.

    (more…)

    Read More

  • You Can’t Pour From An Empty Cup

    there is a cartoon heart bleeding out and the caption says 'you can't pour from an empty cup'
    You can't pour from an empty cup

    Isn’t that heart just the best image for when you keep putting others needs above your own? You just end up bleeding out. 

    Now don’t get me wrong, I am so guilty of this too. I think as people who suffer from chronic illness we have this awful tendency to try and put others needs first out of guilt that so often we let them down or can’t be there for them in the way that we would if we weren’t sick. It’s like we bargain with ourselves that if we push and go to that  party or help that friend out, it will make up for all those times we couldn’t. The thing is it normally just lands us in a flare and has us cancelling other plans that we will feel guilty about. 

    (more…)

    Read More

  • My Pain Isn’t Magically Gone Just Because I Take Pills

    A cartoon unicorn with stars shooting from it's horn is next to a caption that reads, 'my pain isn't magically gone just because I take pills'
    My pain isn't magically gone because I take pills

    Chronic pain (that is pain that last for six months or more) is largely misunderstood and worse still when it comes to women and pain. Which is astounding considering that 70% of chronic pain patients are women but 80% of pain studies are carried out on men or male mice. That’s just not ok! We are given drugs that once finally tested on women tend to just be a load of side effects and little to no benefit which is not surprising when you consider that our immune systems are actually quite different to mens. It’s one of the reasons why scientists think we live longer but it could also be a massive factor in why we are more prone to issues that stem from the immune system. 

    (more…)

    Read More

  • All Things Access

    Two cartoon mice in crowns have a caption between them that reads, 'Everything you didn't know about access'
    Everything you didn't know about access

    I have a confession to make, I still worry about getting access needs wrong, so it’s no wonder non disabled people can often feel completely out of their depth with this too. 

    Access is an incredibly personal thing and I am a true believer of the idea that you will never truly understand access issues until you face them. I never really understood how important drop curbs were until I bought my mobility scooter and had to launch myself off pavements without them (it’s not as fun as it sounds and breaks your back!) but what I found is there is a wealth of information out there and some amazing people who are really breaking it down and making it, well, accessible!

    (more…)

    Read More

  • Episode 5 – Babe with a Mobility Aid

    Hannah is standing with her leopard print walker and a cape that says 'Am I Disabled Now?' The caption reads, 'Episode 5 - Babe with a mobility aid'

    How do you use mobility aids and still feel like you? Often the images we see of people using mobility aids are dreary and it looks like their life is over but that’s so far from reality. This week’s guest is Annika from @LittlePineNeedle who started the amazing #BabeWithAMobilityAid movement. We talk about coming to terms with loss of mobility, buying your first mobility aid and what it feels like to start claiming the word disabled.

    Read More

  • Episode 4 – Ableism

    Hannah is standing with her leopard print walker and a cape that says 'Am I Disabled Now?' The caption reads, 'Episode 4 - Ableism'

    What is ableism and how does it apply to me? This weeks guest, Nina from @Nina_Tame talks all things ableism. From how we deal with it while out and about to unpacking internalised ableism and the work we have to do when we first become disabled.

    Read More