Disability shapes the way

Felix's right-hand wrist

There she is: my soon-to-be-45 year old right-hand wrist. This wrist that has played many tunes on the piano, been involved in many precious hugs, knit countless swatches, stirred a great quantity of stews, pegged out untold laundry, pressed record and pause at least a thousand times, and edited who knows how many podcasts and videos.

Felix's right hand wrist photographed against white cupboards

Yesterday my Rheumatology team confirmed that I now have Osteoarthritis (OA) in this wrist.

letter from the hospital about the osteoarthritis in my wrist

I’ve had Psoriatic Arthritis (PA) for twenty five years. PA is an autoimmune condition in which my own overactive immune system attacks my joints. The pain from PA is caused by active inflammation in my joints. I take immunosuppressive medications to limit the damage it can cause. These have difficult side effects, such as making me much more susceptible to infection and totally allergic to the sun. A basic cold turns into Pneumonia; COVID hits me hard; and I am constantly battling minor infections. In the hot months all my skin is a red hot itchy rash. And being immunosuppressed means being tired in a way that is difficult to put into words.

Still.

I’m so, so grateful for my medications which keep my active inflammation low enough that I can do many things I love. I can do many things that were impossible when I was in my early twenties and unmedicated. I don’t take it for granted that I can walk without an aid and run for a bus if necessary; that I can swim in the sea; that I can carry a friend’s bag AND my own; that I can go up stairs with no bother; that I can work in the garden. I am so, so, so grateful for the many things my disabled body can manage. Sewing amazing cuckoo costumes, cleaning sea urchins, taking and growing geranium cuttings… for example.

Geranium babies!

Geranium babies

Nevertheless, there’s been enough low-level background inflammation on top of the heavy hand-work required by my work that I now have OA in my right wrist.
OA is different from PA in that it’s not so much about autoimmune inflammation as it is about long-term damage and wear to our joints over time. OA is very painful, but the pain is caused by the joint becoming mechanically damaged and clonky.

Put simply, knitting, computer work and ongoing inflammation have taken their toll on the one right-hand wrist I will ever have in this life. It used to be that my wrist was sore after a big knitting session, or after I’d been using my computer for too long without breaks, or after I’d packed up a big stack of orders, but now it just hurts all the time and those things make the everyday pain much worse.

Treatment options are limited. Physio won’t help as the joint itself is physically damaged beyond repair.
I can try and reduce pain in this wrist by using it less and there is an eventual possibility of fusing the joint via surgery which will seriously limit how I can use it, but might (?) help with the pain.

I have to think seriously about my work and find ways to keep it going that will not further wreck my one right-hand wrist. I want to continue to use and enjoy it for as long as possible. I’d like to still be able to play my piano when we finally get it moved into our new home; to be able to continue to knit and sew and garden and cook glorious feasts for my friends. I’d like to not be in pain all the time.

One and a half legwarmers

The LISTEN hat swatch

This year, I’ve only managed to knit one and a half gold and brown legwarmers and a few swatches because it hurts too much to sit down and do the kind of production knitting required for pattern releases or books.

a stack of handouts produced for a class at Shetland Wool Week

To complete the Oddventure Hat sample for my classes at Shetland Wool Week last year I had to work in 35 minute stints followed by 20 minutes spent stretching and resting. Through it all I was caning paracetamol and anti-inflammatories like smarties. After talking to the nurse yesterday, I finally admitted what I have known was coming for a long time: knitting cannot be central to how I earn my money in the future.

The other thing that really takes its toll on my body is shipping books. Hoiking boxes of books around and opening, folding and sealing envelopes are all surprisingly hard work on the hands, and I don’t have enough orders to cover the cost of getting someone else to do this very manual work.

Felix's books on the shelves in my home office

As has happened many times in the last twenty five years, disability shapes the way. I need to stop focusing on producing knitting patterns and wind down the inventory of physical products in my online shop. When my current stock of books is gone, I won’t reprint any of my titles or re-order any of the other books I stock: once they’re gone, they’re gone. I’m also going to start selling off my stash because it’s clear that I own far more yarn than I can ever knit.

If this post feels a bit doom and gloomy, worry not, my friend, for I HAVE A PLAN.

My PLAN is to keep on building The KNITSONIK School. Even with my right-hand wrist in the state it’s in, I’ve managed to produce Colour at Play this year.

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A practical online course that shows you how to play with colour

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I’m so proud of this amazing course and the feedback has been great, with folks reporting that it has made them look at the world in new ways. One participant said that my courses are “an inspiration for how to live”. At a time when I’m feeling glum about my future work prospects, I take heart from that.

KNITSONIK Bullet Journaling remains consistently my most popular and well-loved course.

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Bullet Journaling for the Messy and Inspired

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KNITSONIK Bullet Journaling is built out of my own experiences of navigating life as a disabled person. All my systems for journaling are rooted in managing long-term health issues; are focused on finding hope and inspiration in daily life; and use creativity as a source of resilience, mischief and power. KNITSONIK Bullet Journaling acknowledge disability and limitation, and holds our creative lives in deepest care and compassion. That’s the energy I need to keep turning towards in order to be able to keep on making things.

I know I can make more courses. And if I can keep building my school, and if people like my courses enough to buy them, then KNITSONIK has a future. There will still be small amounts of knitting, but today it feels like everything is pointing me towards doing more of what I’ve done with Colour at Play and KNITSONIK Bullet Journaling: creative courses that give us new ways to see and celebrate everyday life; creative courses that are underpinned by a stubborn spirit of resistance and resilience; creative courses filled with tools that you can use to make joy when there is none; creative courses that only I could make.

KNITSONIK Bullet Journal, Dr Felicity Felix Ford, I AM THE ARTFORCE - embossed in gold on my bullet journal

It is a lot of work each time, and for the past four years I’ve been juggling producing and managing courses with order fulfilment and managing my online shop. My next year on this earth will be about finding a new rhythm for my work that takes my new limitations into account and that takes better care of my aging body in all her wonky wisdom.

Felix's wonky wrist

YOURS IN NOW I OFFICIALLY HAVE TWO KINDS OF ARTHRITIS,
FX

16 thoughts on “Disability shapes the way

  1. Felix — I’ve been pondering for several days how to respond and, today, I remembered this poem. Though Robert Frost isn’t usually one of my go-to poets, this poem about life not being what one might wish, ideally, has always touched me deeply and felt so truthful.
    Keep doing you, Felix. xo MJ

    The Oven Bird
    BY ROBERT FROST

    There is a singer everyone has heard,
    Loud, a mid-summer and a mid-wood bird,
    Who makes the solid tree trunks sound again.
    He says that leaves are old and that for flowers
    Mid-summer is to spring as one to ten.
    He says the early petal-fall is past
    When pear and cherry bloom went down in showers
    On sunny days a moment overcast;
    And comes that other fall we name the fall.
    He says the highway dust is over all.
    The bird would cease and be as other birds
    But that he knows in singing not to sing.
    The question that he frames in all but words
    Is what to make of a diminished thing.

  2. Dear Felix, Thank you for sharing this…I only wish I knew the right words. Having suffered nerve damage that might have meant I could never knit again, I think I can understand the sense of potential loss. Your focus on what you can do and what you want to do is such a good reminder to us all. Thank you for the joy of your courses, your patterns, and your books.

  3. Felix, so sorry to hear your news today and I marvel at your positive attitude in all you have been through and are going through. I am just beginning the Colour at Play course and know I will enjoy it.
    Your emails of late have given me such joy. Wishing only the best for you.

  4. Felix,
    I’m so sorry you’re experiencing this pain and all of these challenges. I admire that you’re adjusting your life accordingly and you seem to be in reasonably good spirits, although I’m sure this has been an upsetting time. I enjoyed and learned a lot from your BuJo course, and am making my way through the Colour at Play course now. Your videos are so informative, freeing, and if i can say so – like I’m sitting down to learn from a kind friend. I look forward to seeing whatever you choose to do next.

  5. Thank you for sharing your personal ‘behind scenes’. It helps put our issues in perspective as well as enable me to thank you again for your brilliant colour course.
    I’m so pleased you are going to put your energy and talents into developing further courses.
    Thank you Felix and keep feeling your way onwards.

  6. Thank you for sharing your personal ‘behind scenes’. It helps put our issues in perspective as well as enable me to thank you again for your brilliant colour course.
    I’m so pleased you are going to put your energy and talents into developing further courses.
    Thank you Felix and keep feeling your way onwards.

  7. Felix you are an absolute legend. I know we’ve never met but I have been reading your work for a long time now and I would just like to send you a lot of love and some gentle hugs. The knitting thing is rubbish but I’m genuinely looking forward to seeing what you do next and to continuing to read your excellent posts xxx

  8. Dear Felix, I admire your positive response to increased disability greatly, and hope that your infectious joy in colour and your ability to share that joy can be as great a comfort to you as it is an inspiration to the rest of us. I hope that a way can be found to reduce your joint pain, as pain is so lowering; and I wish you success in all your future creative work whatever form it takes.

  9. Felix – It is hard for me to imagine you not knitting. On the other hand, I have loved your online courses and love this as a possible way to keep you, Felix, in my creative life. I have age-related disabilities that are catching up with me. I just turned 74 this week. I am thankful that I have lived for decades without limitations. At the beginning of this month, I went on a knitting retreat in Italy. My walking was slower, but with a combination of walking, buses and taxis, I did OK. My inflammation began primarily in my left eye 10 years ago. I had to wait more than 2 years during the pandemic to see a specialist in my disease after the one I was seeing left my Health Management Organization (HMO). I now am seeing a wonderful one and she has me seeing a Rheumatologist, also wonderful. I am taking a new medication that is primarily for rheumatism and arthritis. It has helped the inflammation in my eye more than the multiple eye drop prescriptions.And saving my eyesight which is so valuable to me. I also learned my right knee is in pretty bad shape. My doctor, who knows I travel a lot, said a knee replacement will keep me moving and traveling. I’m happy to know this. On my trip to Italy, and 4 flights, there were several without jetways and I faced 2 flights of stairs. After the first scary experience going down, I requested assistance and learned that i needed the help. I will add that the wait for the surgery, my doctor told me, is 3 to 4 months. I said to her – on the NHS it’s probably 3 to 4 years – she has family in London. So I am feeling very fortunate. After a working life of 45 years , working with deaf children, youth and adults, and people with a range of disabilities- I realize I am blessed and also know, by their examples, that there are many ways to get on in this world. I will add that I would happily pay a few dollars more for your books etc. if that meant you could get help. If mailings were done only once a week or even once a month in order to make it more feasible to have someone come in, I’d be happy to wait.

  10. Ah, the aging body is not for the timid. I have the same issue in both wrists and can say that there are some definite strategies that have worked for me. I always use a thumb brace when I’m knitting, spinning, weaving, gardening, and handling books (I’m a librarian…so this is part of my actual job!). Whenever there’s a chance that my thumb will be used as a tool, I put the brace on. Is it a bit clumsy? Yes, but I have adapted to it. I also knit and spin and throw a shuttle kind of funny…but I’ve found ways to grip very lightly and use fingers rather than the thumb joint, so I can do more of what I love.

    Devices—adaptive garden tools and easy-grip scissors (which I’ve just tried and am amazed at the difference they make) are also things to look for.

    I also limit myself…though everything I love to do in the world, other than reading, requires the use of my hands. I know I can’t sit and knit all day…but I may be able to do a couple of hours, take a break to do other things and then come back to sewing or fiber prep or weaving for a while. Tiger Balm helps me…and I do use anti inflammatories sparingly.

    It is said that when one door closes, another opens. Your Bullet Journalling class was wonderful! More of that is a terrific contribution to the creative world.

  11. So sorry about this new diagnosis and the limitations it brings. Grieving is inevitable, but you are right in also acknowledging the space created for other projects and new ways of being. In my own experience with RA and OA, I find that cooperating with my body makes the best use of my energy and allows me to be positive and peaceful (most of the time). You are a brilliant teacher, and I look forward to seeing where your creative vision takes you. I loved your BuJo class and have just started the Colour class. Thank you for introducing me to Miranda July and Jenny Odell—I’m reading How to Do Nothing and discovering a kindred spirit. Much of my life has been a quiet act of resistance. Take good care of yourself. See you at The KNITSONIK School!

  12. Dear Felix, I’m not going to lie, this was a difficult text to read today, and I hope it has helped you to write about the coming changes. I have just rediscovered the joy of knitting and I can’t imagine if I had to stop again. If your health allows it, please continue to produce courses. Colour at Play got me back into knitting, in fact all your courses (online or in person) got me into being creatively active in many ways. Take all the me time you need, and take care of yourself.

  13. Yeah. Autoimmune disease is ‘a right pain’…. with me it’s my lungs that limit me. But we find a way, we always find a way to continue LIVING. Dum spiro, spero. While I breathe, I hope. And I hope you find your path through this new tangle in your life.

  14. Devastating news but if anyone can find a way and a silver lining, it is you. You are beyond inspirational, your work full of life’s lessons in so many ways and applicable to every facet of my life, thank you beyond any measure, note and all.

    Take good care of yourself and I know you will meet on the other side of whatever all of this brings.

    Xo, Liza

  15. I wish I had words to say for the changes you have to go through. But I do want to say I have both of your courses and I love them and I love just listening to you teach and talk. And I agree you change the world by changing the way, I see it.

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