The Pillow Fort

Shop, magazine, community, blog and more to make chronic illness (physical and mental) suck less!

[earlgraytay]

I would like to propose a new term

disability parkour- compound noun, /dɪsəˈbɪlɪti/ /pɑɹˈkʊɹ/  1. The method by which physically disabled people who don’t have their mobility aid navigate their environment, including leaning on things, sitting down on things, asking pedestrians for help, and so on. 2. General- the ways in which all disabled people navigate an environment that is unfriendly for them. 

If you do a particularly skilful feat of disability parkour, post it in the #disability parkour tag so I can cheer you on. :) 

[thepillowfortuk]

My bizarre morning routine (& the joys of being un-instagrammable) - That Hummingbird Life - @megkissack https://t.co/0y3LiyHe1Z

[lesbyterianchurch]

Not every day has to “count.” Some days, your purpose is to make it to the next one. That counts too.

[emmisnotshortforemma]

Every day… 

[prettysickart]

I have to share the awesome app I use to negate this issue!

it’s called Medisafe and it’s a free app available in the app store or on google play and it allows you to input all your medications and:

-choose the shape, color, and dosage of each medication (including indicating if it’s an injection or a pill or an inhaler) -notate the dosage and/or # of pills -each time of day/night it needs to be taken -add food or other special instructions -schedule refill reminders -add a med-friend (someone who will be notified if you forget to take it!)

The interface is great and i’ve found it very easy to use.  You can also add meds to take “as needed” so you can indicate that you’ve taken an out-of-time painkiller or booster pill etc.

When it’s time to take your pills it uses the text-notifcation noise on your phone to alert you- so it’s lowkey, but (usually) unmissable.  When it’s time, you have the option to snooze, dismiss, or take pills.  OR you can just shake your phone to indicate that you’ve taken them (I usually either snooze or shake the phone).

It tracks your progress too and you can export yourself an excel spreadsheet of your pill taking to give your physician etc if needed.

You can set the snooze time manually, the maximum number of alarms, all kinds of things- you can set your own alert sound too if you don’t want it to use your text-notification.

.

I am TERRRRRRRIBLE about remembering pills (seriously, I forgot for 3 weeks).  I haven’t missed a dose since I started using it and it’s fantastic.

[erinkyan]

S I G N A L B O O S T

I know a lot of folk have trouble with this so this could be super helpful!

[vanillaandlavender]

resources!

[thepillowfortuk]

Guest Post: The Diagnosis: Life at a slower pace

Guest Post: The Diagnosis: Life at a slower pace

Never did I think I’d be the one needing help because I was the helper, the go getter, the achiever, the woman breaking down walls. Despite the difficulties life threw at me including anxiety disorder and OCD (Obsessive Compulsive Disorder), I was always able to work my way through trials. But chronic illness turned out to be a wall I couldn’t break down. I started not feeling quite right the…

View On WordPress

[thepillowfortuk]

New on the blog: 2015 Review http://thepillowfort.co.uk/2016/01/2015-review/

[girlspoons]

new blog for disabled/mentally ill women

hi! as a disabled, mentally ill woman and a feminist i’m often saddened by the lack of resources geared towards us and the frequency with which we’re forgotten in feminist and general activist spaces.

this blog aims to combat this somewhat by creating a safe space for disabled and/or mentally ill women to access information, share their experiences and ask for support.

i will be making and reblogging posts geared towards and inclusive of our experiences in the hopes that they make someone’s day easier.

disability and mental illness are not the only marginalizations i face and i know how hurtful it can be to have one part of your identity invalidated in a space catering to another part. this blog will aim to be intersectional and welcoming to disabled and mentally ill women of colour, lbpq+ women, trans women or women otherwise marginalized on an axis other than disability/mental illness.

i’m also not interested in infighting between disabled women and mentally ill women or invisible and visible disabilities and mental illnesses.

this space will aim to be solely about bringing some much needed positivity and validation into our lives.

i would appreciate a signal boost of this post so this blog can reach its intended audience! i will fill up the queue in the next couple of days and posting will begin starting tomorrow.

[bitchontheprairie]

[marchingstars]

I’m so excited for The Pillow Fort 2016 Planning Party this weekend! 

Only £5 in advance and you get a workbook and the recording! 

Join me to make 2016 epic, chronic illness style! 

[thepillowfortuk]

You’re invited to The Pillow Fort 2016 Planning Party! 

Please share far and wide!

[marchingstars]

Due to headache of doom yesterday, The Pillow Fort 2nd birthday party had been rescheduled to today. 7pm GMT, 2pm EST. Would love to see you there! www.thepillowfort.co.uk/rsvp #chronicillness #chronicpain #chronicfatigue #chronichealth #spoonie #spoonies #mecfs #fibro #fibromyalgia #lupus #undiagnosed #spoonielife #chronicbabe #mentalillness #cfsme

[thepillowfortuk]

New on The Pillow Fort blog:

10 ways to help a friend newly diagnosed with chronic illness

[thepillowfortuk]

Research participants wanted: Partners of people with chronic pain (UK to start with) Please share widely! Interviews are conducted in person, via telephone or via skype.

Hi, My name is Laura Smith and I am a trainee clinical psychologist. I’m conducting some research as part of my doctorate in clinical psychology and was hoping you could help. I’m looking at the experiences of partners’ of somebody with chronic pain.

So why do the research? We know that partners play a hugely influential role in supporting somebody with chronic pain and that partners can influence how well somebody with chronic pain copes. It would be beneficial therefore to understand partners’ experiences of chronic pain so that professionals can better understand the impact of chronic pain upon partners.

I’m interested – what next?

• If you are a partner of somebody with chronic pain and you live together, you can contact me for more information. If you’re happy to take part then contact me on the details below and we can arrange to meet up for an interview. It will last approximately an hour although we can take as little or as much time as you like.

• If you are not a partner of somebody who experiences chronic pain but you think you know someone who would be interested in taking part, then please do pass this information on to them and they can contact me on the details provided.

You can follow me on twitter (@smith_smithl4) Telephone/Text: 07508 375 651 Email: [email protected] Postal address: Laura Smith, Doctorate in Clinical Psychology, Furness College, Lancaster University, Lancaster, LA1 4YG

[thepillowfortuk]

New on The Pillow Fort blog:

10 ways to help a friend newly diagnosed with chronic illness

[thepillowfortuk]

New on The Pillow Fort blog:

How the permission to ‘choose again’ will change your life

[lordsofthespoons]

When I try to read something with brain fog...

[gifak-net]

[lostmoonchild-deactivated201601]

Lol savage

[universaldelusion]

I no longer believe in the human race.

[negus-q]

This is the laziest shit ever

[gabrielleamaris]

How lazy can humans get?

[slayngstonhughes]

Have you never met white ppl?

[mcride]

yh but if you look outside your own personal reasons for using this, laziness, it actually looks a really great and practical way to put on your socks if you have a disability that hinders you from otherwise being able so without someone there to help you 

[studiousmedic]

you do realise that there are people out there who literally have to travel door to door helping elderly people, disabled people and people with chronic illnesses to put on their socks? people are paid to help put on pressure socks to help with oedema? don’t you realise that if these people could have one of these tools, these caregivers could be doing something else and that this therefore is an incredible tool designed to cater for some of the most healthcare dependent people in our society? do you guys even realise there are other people living other lives?

[commander-ledi]

i really wish i had this when my spine was broken and i had to wear a medical metal corset which made bending down impossible. i had to ask my mom to help me with socks and it was kinda humiliating.

[bargests-archive-deactivated201]

My dad spends an hour in the morning getting dressed because he has no one to help him to get his socks on because his ankle is fused. If he had this it would literally save him an hour.

“Oh but people are so lazy!”

fuck off you ableist pieces of shit

[procrastinista]

Honestly I don’t even get how you could look at this and think “lazy”. This looks like more work for an otherwise able-bodied person than just putting their sock on the regular way. It’s pretty obvious this is meant for people who have trouble bending over, like come on.

[rubyvroom]

You know how people go straight to “lazy” on this? Because we’re trained to think of most accessibility modifications as lazy. The disabled = lazy message is deeply embedded in our culture.

[sometimesleifwrites]

Does anyone know what this is called/where I could get it? My mom has incesingly bad arthritis and the process of bending to put her socks on is getting harder for her. My dad could totally put the socks on it for her at night and then in the morning she could just slip them on.

[themightyif-deactivated20161012]

It appears to be the Pratiflex PR001. They claim that the Pratiflex PR002 is more versatile, though. They’re Brazilian products, and my Portuguese is not so hot (nor is Google Translate’s). However, the website is here and you can apparently order them online for the equivalent of approximately US$20 (not including shipping, etc.) for the PR001 or US$34 for the PR002. 

The site says that they’re widely used in the States and Europe, but that they’re finally making them available in Brazil, so presumably you could find similar products from different companies elsewhere. A search for “sock applicator” turned up this Amazon.com category with several similar products, for example. From that page, this appears to be a good product, available for shipping in the U.S., for about $30.

[bethsunshine-deactivated2017012]

So this is a teeny bit off topic, but there’s a group called the Tetra Society of North America, and if someone needs an assistive device and it isn’t commercially available yet, they have volunteers that are retired engineers and other design/handy types that will work together on solving a challenge you may have. They help make all kinds of things from adapted Wii remotes to specialized coffee pot handles to medical product adaptations. They are SO cool. This is their website: http://www.tetrasociety.org/ 

[whenidance]

I rarely wear socks anymore because of my knees. This thing looks awesome.