Knitting is used by a lot of people as a form of therapy to help with various things and is therapeutic for lots of reasons too. I share some of my chronic illness journey and how therapeutic knitting has helped me through the tough times with it and how therapeutic knitting might be able to help you too.
[Start of image description for image above: A photo of Arjaye laying down on the couch with a blanket over her as she knits a cotton blanket. On top of the photo is a white rectangle with the words "therapeutic knitting". Underneath the photo is a sage green rectangle with two white stripes and the words "Therapeutic knitting: How it's helped me and can help you". End of image description.]
Disclosure: This post includes an affiliate link at the end for Endo thrive, at no extra cost to you I receive a small percentage off my membership which helps me pay for my monthly membership and stay in the Endo thrive group.
The beginning of using knitting as therapy
I first started using knitting as therapy from 2007 onwards, not that I always knitted it was not something I did every week or even every month but occasionally. Then a year later in 2009, it became something I did weekly and a year later I was hooked and I've been knitting almost daily since then. When I started Cozy Woodland Cottage Knits in 2018 and later on turned it into a therapeutic knitting business I had no idea how many people I would help or how much I'd use knitting as therapy myself. Up until then, I'd used knitting as therapy for anxiety, depression, seasonal affective disorder (SAD), and eating disorders (both anorexia, bulimia). Knitting gave me something to focus on, something I could achieve and create that gave me a sense of accomplishment, peace and tranquillity.
[Start of image: a photo of Arjaye in a hospital bed with a knitted stripy scarf on her needles which are on her lap. At the top is the words "therapeutic knitting". Underneath is a sage green rectangle with two white stripes the words "A journey through chronic illness with therapeutic knitting". End of image description.]
My business coaches suggested I share more of this at the time so I created a post on therapeutic knitting and later on, another coach suggested I share about my current journey in 2019, while it is taken a while to write this post I just couldn't write it at the time due to PTSD and medical trauma. I did write a few posts on Facebook and Instagram about it as it was all I could manage at the time. While it's still raw, the medical trauma is there and PTSD is also still there this is the first blog post about it that has been burning to be written. If this helps just one person who has endometriosis or chronic illness/pain or wants to use knitting as therapy it's been worth writing this and is why its been burning to be written. Whatever you are going through you are not alone and I'm always here if you need someone to talk to or you can post inside our community Cozy Woodland Cottage Knits Place. Please know you are welcome inside that safe space even if you don't knit I'm sure you'll find value in the weekly quotes and chats too. After all its what I created it for along with being an online knitting/crochet group as a lot of us can not go to a physical knitting group due to chronic illness and pain.
A decline in health
In May 2019 my health declined and I spent more time in and out of the hospital than at home wondering what was wrong but knowing the Drs and nurses who said it was in my head were wrong. I was discharged without answers, labelled as an attention seeker, asked questions about whether everything was o.k at home because of course id rather spend time here in the hospital the place that's always made me anxious and no I didn't like visiting people in there either. The smell of the place and just the whole atmosphere of the hospital just gets to me every time. Yes, Drs sent me there for the hospital to find out what was wrong and I still got the above from the hospital staff.
Finally, in June 2019 I got a dr that said they would find what was wrong because I needed answers. Bloods, scans etc were all normal. I had an exploratory laparoscopy by a surgical dr as the 5 gynecologists that saw me ruled out anything gynecological or endometriosis. I had my appendix removed as it had funny stuff on it - yea that's what the surgical dr called it as it was nothing like he'd seen before. Why because only excision surgeons are trained to know what endometriosis looks like as it can appear in a few different ways and also how to treat it.
I ended up in more pain the night before and thought maybe id stopped taking morphine too soon and done too much over the day. Resting and sitting isn't something I find easy to do. I woke cold and shaking unsure why saying no don't call an ambulance not knowing how bad I truly was and not wanting to go due to medical trauma either. My partner didn't listen and I went to the hospital by ambulance after my temp was nearly 40 degrees Celcius. Scans showed I had a collection of faeces after my bowel was nicked during my surgery and I needed to have a procedure to remove it. I was freaking out about being awake, the whole procedure, being in the hospital because anxiety is like that, my heart rate went up so much that they couldn't do my procedure until it went down.
The nurse started talking to me about something I loved and we started chatting about knitting, what I loved to knit and how she was amazed at how people could knit without looking. I said it was something I never thought id be able to do and I remember asking my Nana how she did it, her answer was lots of practice and started talking about the first scarf I knitted. She started laughing and I wondered if it was my description of the bright coloured stripy scarf but seeing me frown she explained that my blood pressure had now returned to normal. I was diagnosed with endometriosis a few weeks later after the biopsy result came back. I still wasn't told much about endometriosis and searched endometriosis pages of other people with endometriosis and endometriosis centres around the world to find more about it and what it was.
What is endometriosis?
While not much is known about endometriosis and more research is needed. Surgeons do know endometriosis is a whole-body inflammatory disease affecting the whole body. Its something people are born with and symptoms usually start around 8years old or puberty. Endometriosis is not something a lot of people know about it and is not something rare either it affects 1 in 10 people born with a uterus on average it takes 8 years to be diagnosed but for me, it took 19 years. It is where tissue similar to the tissue in the uterus grows in places it shouldn't. On organs, causing adhesions gluing insides together and making a mess. Endometriosis has it's own hormones to grow and doesn't need a persons own hormones to grow, it has now been found in every part of the body. Due to how the tissue is it isn't always seen on an MRI, CT or ultrasounds even stage 4 endometriosis (the worst stage there is).
Endometriosis New Zealand defines endometriosis as: "Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in places outside of the uterus. The tissue can form nodules or plaques which may be visualised at surgery. Endometriosis is commonly found in the pelvic region on the thin pelvic lining called the peritoneum. It may be also be found on the pelvic ligaments, ovaries and bowel. Endometriosis is occasionally found in places outside the pelvis such as in scar tissue, the bellybutton or lungs."
Symptoms of endometriosis
It causes hormone problems that are not always detected by blood tests. I'd always had irregular, pain the week before 5/10 pain, headaches with periods and I was just told by Drs, nurses, councillors etc that it was normal but it's not normal so after years of asking I'd accepted it as my normal and stopped asking Drs about it. When I really should have kept on talking about it and asking for help but I didn't know to, so if this is you please keep talking to Drs until they listen, until you get answers etc. Symptoms vary depending on the person and some people don't experience all of these for me I have A4 pages of symptoms but here are a few of the symptoms of endometriosis:
- Pelvic pain
- Bladder pain
- Bowel pain
- Back pain
- Pain down legs
- Fatigue
- Irregular periods
- Ovulation pain
- Cramps that are intense and last more than a few days sometimes starting before a period
- Endo belly (Bloated belly) due to inflammation
- Heavy periods
- Passing blood clots
- Headaches around periods
- Sharp pains inside
- Feeling like you being stabbed, on fire
- Feeling like your insides are being squeezed trying to come out or like your going to give birth to them
- Nausea and vomiting
- Pain with eating, drinking
- Can cause infertility
- Hair loss, thinning hair, clumps of hair missing due to hormones
- Along with these many endometriosis warriors also have:
- Anxiety
- Depression
- Suicidal thoughts
- PTSD
- Medical trauma
Endometriosis is not caused by any of the following:
- Retrograde menstruation
- The linning of the uterus shredding and the tissue ending up on organs or from the lining of the uterus reabsorbing the tissue when it shreds.
- This is why a hysterectomy is not a cure for endometriosis
- It is also why birth control is not a cure for endometriosis though it can mask symptoms for some people
- It is also why drugs that induce medical menopause are not a cure though it can mask symptoms it does not treat or cure endometriosis despite the misinformation around staying that it does.
- Information on this is from Nancy's nook
Some of my story
I ended up in hospital not long after and was told I was just in a flare-up or centralised nerve pain. I knew in my heart that something wasn't right and fought for a second opinion with the help of family members ringing up the hospital daily to complain, ask what was being done which was usually nothing. I was told there was endometriosis all in my womb, on my pelvic floor and likely in other places too. During that stay, I asked for a hysterectomy (not a cure) because of heavy periods, finished having a family or rather endometriosis choose for us after 13 miscarriages and 14 losses. We had long decided I wanted a hysterectomy but was denied due to my age time and time again, I was asked over 5 Drs during the day if I was sure. I was sure I was done. We are thankful for the children that we do have and they are so precious to us.
My symptoms got worse, my GP dr told me later on that I had my bowel adhered to my uterus which yes is something I should have been told and explained my pain going to the bathroom and leaving it waddling like a duck in excruciating pain and my need to sit down. I was thankful my dr wrote it on my Drs certificate along with other things I couldn't do because I hated needing to sit down or help. The person in charge of the shift would often tell me I needed to sit down, some explained that I was pale, walking funny which I'd gotten used to. I went from May 2019 being able to walk 5kms daily and being able to work as a caregiver 20-30+ hours a week to June 2019 walking less and not on any incline eg. a hill, ramps or anything steep and struggling to work 8 hours a week in 4-hour shifts. The fatigue hit me hard, I'd wake up get dressed, do some dishes and nap for a few hours just so I could get through the day. I was diagnosed with IC, IBS-D and pelvic floor dysfunction a few months later. I soon needed a walking stick on my bad days and was just doing what I could. Mostly knitting as it was something I could do while I was sitting down especially now that I needed to rest something I've never been good at.
Debhabilitating endometriosis
There was nothing that prepared me for how debilitating endometriosis was or could be. In October 2019 I needed a walking stick to walk daily as I realised I really needed one and after a friend pointed out if I didn't need one I wouldn't be thinking about getting one, looking at getting one, holding onto whatever furniture is nearby to get places throughout the house or stuck inside because there is nothing to hold on to once outside. I ended up getting one and tried a walk of 5mins using one but it was too much which also meant it was time to stop working. I didn't want to stop working I loved my job but I didn't have a choice. Then I thought things can't get much worse, right nope I was wrong things got worse and I relied on my partner to help me to shower, dress myself and some days do my hair or put my wig on because I couldn't lift my arm up to do so.
During this time it was no different than the other times I'd turned to knitting for therapy to help cope with things. I'd grab my knitting and start knitting whatever I had on my knitting needles often just a simple garter stitch square. Knitting is a great way to practice mindfulness as your focus on your knitting and the repetitive motion is a bit like meditation. Here are a few things I focused on that you can use to focus on:
- The feel of the yarn in your hands
- The feel of a ball of yarn in your hands
- The feel of the item your knitting
- The feel of the texture of the stitch
- The sound of the needles clicking
- The movement of your hands
- The changes in colours of yarn if using variegated yarn, self-striping yarn, or changing colours eg. stripes
- The changes in stitches eg a knit and purl stitch or stitch patterns if your project uses a few different stitches.
- knitting a few rows and seeing the changes in your project
- The feel of the needles in your hands.
Therapeutic Knitting
Knitting also gives a sense of achievement and accomplishment while also being creative While I hopped I would improve and that it was just a really bad flare up things didn't get better. My period days spent crawling on the floor, crying in pain, on the couch with wheatie bags, taken all the meds I could with my allergies and in 16/10 pain knitting kept me going. While with pain that high concentrating on knitting which I'd been doing for over 10 years was impossible even to remember how to knit or what to do. So I'd just hold a ball of yarn, visualise my knitting project I was going to create with it and it helped me get through the day. I often did this in the hospital too when I felt so unwell, had overwhelming nausea, and/or had infections. Other days I'd just pick up my needles and hold them in my hands until I learnt how to knit laying down and how to without causing my arms to ache. The days I needed to go to the hospital you can probably guess the first thing that was packed in my hospital bag and nope it wasn't clothes, toiletry items but my knitting project. It helped me through those stays so much and through the anxiety, those caused especially when a past visit or admission had added to my medical trauma and PTSD. I'd have to say it helped the most when I ended up in there a few times during Covid-19 lockdowns cause they made my anxiety even worse and well the hospital is the last place I want to go anytime. It is amazing how much it can be calming, take your focus off your pain and it can do the same for you too through the good and tough times.
More about endometriosis and some exciting news
If you'd like to know more about endometriosis or about using knitting as therapy please contact me or leave a comment below whichever you prefer and depending on what it is about as I know somethings people don't like to talk about publically and that's o.k too.
Those days were dark days and some of my darkest, they were tough and I'd count down the days till the surgery to get through. Knitting helped me pass the time and gave me something I could do and achieve when everything else was a struggle. Messages of support and positive thoughts from family, friends, followers (most of you I now call my friends) checking in all meant so much and all helped more than most of you know.
I don't know when I'll next write more about this on this blog but I will write about surgery and the months thereafter. Even then there is so much to be written and too much to write here. I have some exciting news I'd love to share with you. I won a 1:1 coaching session to get help to write my book, I've wanted to be an author since high school but I've never written a book. I'm so excited and nervous at the same time, the book is going to be about Therapeutic knitting through my journey with chronic illness and chronic pain which I want to write to help other people, raise awareness of endometriosis and spoonie struggles.
Please know I'm here for all of you and while our journeys are so different you are never alone in this debilitating and isolating journey, my love and support to all of you.
For more information about endometriosis
Websites
Facebook groups
- Endometriosis New Zealand
- A discussion and support group
- Based in New Zealand
- Run events during the year
- Endo Thrive (affiliate link - no charge to you I just get a percentage off my monthly membership)
- a paid Facebook group that also has:
- resources
- monthly masterclasses
- monthly challenges
- monthly Q and A with Dr Cook Endometriosis excision surgeon
- a monthly circle where we all chat on zoom.
- Nancy's Nook Endometriosis Education
- Education group, not a discussion group
- Also has information on Excision surgeons worldwide and based in the USA
- Endo Warriors Aotearoa
- A discussion and support group
- Based in Wellington New Zealand
- She sends out endo packs to people who have had surgery going through tough times
- She also has plans to send out period packs to those in need
- Holds meetups during the year
- The Entwined Collective Community Group
- Discussion and support group
- Based in Auckland New Zealand
- Holds meetups during the year
- Qendo Support New Zealand
- A support and discussion group
- Based in New Zealand
- Holds meetups around different parts of New Zealand
- Qendo & CO
- Support and discussion group
- Based in Australia
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