How knitting replaced my friends…

With chronic illness and disability, loved ones often exit your life, as soon as they realise you are not going to get better. They are there for you when they think you’ll recover, but disappear the minute you don’t. There is a saying I like…

***chronic illness will show you two things very clearly – the amazing compassion of some people you hardly know at all, and the disgusting selfishness of some people you thought you knew very well. ***

It can get pretty isolated waiting at home waiting on services and equipment, that never seems to arrive, especially when a pandemic gets added to the equation. It gets a little monotonous talking to yourself after a while, so rather than going insane with boredom, depressed your friends have bailed, I decided to get creative. I turned to my huge stash of yarn. What once overwhelmed and embarrassed me, because my new best friend. I have lost contact with nearly all of my friends I had before I got unwell BUT have reconnected with this stash of goodness..and it’s not letting me down! It’s there for me every time I need some comfort.

I have spent most of my adult years knitting, latch hooking rugs, needlepoint cushion covers, even designing my own knitwear and fully outfitted dolls. The yarn has been there for me, no matter how I am feeling. It has been there for me in my darkest times. My greatest achievement was definitely, knitting for the WOW wearable art awards where I had a lot of success with my costumes.

Art makes me feel better. Since becoming isolated in my home, I have been able to reflect on just how much of my life was spent looking after other people’s wants, needs and problems and putting my own on hold. I told myself they were much more important than me. In reality, by focusing on other people, I guess I was saying I was not worthy of the same type of care. This is why I am excited to have made the connection.

I have no excuse to ignore my needs anymore. I can’t care for others like I used to. My health has told me it is time to spend time on someone else.…that person is ME. I see this as a wake-up call . I’m allowed to be selfish for a while. I’m going to design a space that is focused solely on what feeds my soul. A place where I can feel good about who I am every day.Where I can feel good about what I can still do, and surround myself with the things that I love. That for me is an art space, surrounded by lots of yarn.

I want to make my tiny house the hub, for all my creative endeavors, with a plan towards making money, doing what I love. In the past, I always blamed not starting my business, on a lack of space, a lack of money, a lack of time …but really if I’m honest, I ran from every opportunity that meant I might get successful. That voice in my head said ’ What if I fail? ‘ I have let this unfounded fear hold me back for most of my life. Even if I did… Everything happens for a reason and comes with a positive spin if you look deep enough. My deep dive brought me to this page and a new appreciation that my health is the catalyst for change, which is definitely my gift in disguise.

Give a little…’’ ah, go on then…’’

It feels REALLY strange to be on the other side – to find myself the disabled person asking for help. It isn’t something I thought would ever happen to me…but then again, do any of us? I’m sure nobody wakes up and says ” I think life has been pretty good so far, why not shake things up a little and become really unwell with an invisible disability…starting right NOW .” Hmm? Anyone? Didn’t think so… lol

I’m not going to lie…It took months to accept that I need to ask for help. To be honest, the thought of asking for money freaked me out when it was first suggested to me. I am not the type to ask for a handout-I am usually the giver and not the taker! I have lived for years with the mantra that ‘somewhere in the world, someone is worse off than you. It reminded me to be thankful for what I had, even if it wasn’t very much! Whenever I felt a little down on my luck, this mantra would come to save the day, reminding me that everything I needed was here already. If I was patient, good things would eventually come. I guess being trapped in my inaccessible house for 8 months, has changed that narrative a little for me. I feel like I have become that person, who is worse off. While I am incredibly grateful to have a roof over my head, it isn’t a safe place for me to live anymore. It doesn’t feel like a home, it feels like a prison. Being patient and waiting for good things, hasn’t worked out well for me this time around !

I think if we are really honest, most of us have had a ‘what if ’ moment, especially after seeing an inspirational movie or a story in the news, but we can’t truly know how much our lives will change until it happens to us. I started a give a little page because I think it is a great way to connect with the world outside my door, to restore my faith in humanity. There are some incredibly kind people out there, And I hope to find them on my fundraising journey. Soooo… here it is … FINALLY ….the link to my fundraiser. It is the start of something positive. I can feel it.

https://givealittle.co.nz/cause/a-big-problem-with-a-tiny-solution

This is not just a tiny house dream. I hope to create an accessible art space where others with chronic illness might like to come and create things alongside me… creating our own little community ,wouldn’t that be awesome!

Why renting doesn’t always work if you are disabled…

I absolutely LOVED the work I did. I knew, firsthand, as a parent to Children on the spectrum, how hard it was to get respite care in my community, so it seemed natural to me to offer up my home and give other parents a break. From there came emergency fostering for children in crisis. I loved being a part of a personal transformation, watching them flourish with the simple gifts of love, laughter, one on one attention, and a shitload of patience. I had an abundance of those things. I prided myself on the work I did with these children. My patience was by far my greatest attribute and was why I earned a great reputation for my work with Autistic children. It never seemed like a job to me. How can it be called work to pour love into children?

One thing you don’t get told is that caregiving for government agencies, won’t be seen as a legitimate income. Both respite care and foster care are classed as ‘reimbursement of costs’, NOT a wage. I tried a few times to buy throughout my adult years, but each time, I found I hit this roadblock. If it wasn’t because of my own children with Autism, it was because of the fact I worked with them! This really puzzled me, why should something that was seen as a valuable job in the community, be a reason to lock me out?

I accepted long ago, that buying a house was not going to be an option. I talked myself out of the disappointment, by lying to myself. I told myself renting was the best way to live. I made peace with that and got on with life renting …..WELL … until I became disabled and realised that life as I knew it, was officially over. Renting was now my worst enemy.

Lying in my hospital bed, I realised this property wasn’t going to work for me anymore. I had a lot of tears. It had everything working against me.. stairs, an incline, laundry outside, a shower within a bath, doorways that were too narrow to turn a wheelchair, should I need one….it was screaming out 100% UNSUITABLE. While this truth hit home, all I could think about was how powerless I was to change a thing about this place. I was not eligible for any home modifications with the hospital as I was too young. I wasn’t able to get ACC, as I was told I didn’t have an accident…Winz told me to ask the landlord, see if he was agreeable to at least modify the bathroom. … that was a resounding ‘ Not going to happen!’. I can’t make alterations to the property myself, or I will be in breach of the rental agreement and lose my bond.

It is inaccessible for so many reasons. I have had to adapt to these problems. with the following:

-I can’t remove the bathtub in order to reach the shower, so need a carer to shower me.

-I can’t bring the laundry inside, so have to rely on others to do all my washing for me.

-I can’t add ramps to the front doorway steps, as it is on the main walkway for the public. Even if I could, it is too steep to be viable . The property is on an incline once you get to the bottom of the steps. I haven’t been able to use this entrance to my house since before I went to the hospital in January.

When my wheelchair finally arrives, I won’t be able to use it in most rooms in the house, due to the placement of doors and steps into certain rooms. So it’s a no-brainer. I need to move out. This is where the problem lies. Where do you go when rentals are impossibly hard to find? I have tried in vain to look for a wheelchair-friendly house….7 solid months of dead ends and disappointments. Every single place that was found, ends up being inaccessible… steps, a steep driveway, or the typical kiwi bath with shower arrangement.

Coming across the Tiny House video in the hospital, was like a message from the universe. I wasn’t even looking for it and up popped a random video.. It felt like an answer was being handed to me. That set my mind on a new course and the one that is fuelling every word in this blog. I feel like I have the answer to my problem, which is the tiny house. I just need to work backward ..using the magic of the ‘secret’ .I see myself in a Tiny house …..now I need to work out how I got it?!

my teeny Tiny house.

Click that like button!!!

I remember the day well. I was lying in my hospital bed feeling pretty darn sorry for myself. I had been left in my room for a few hours, unable to reach the bell to call my shift nurse. Not having a voice for 6 weeks, meant I couldn’t shout for help. I was feeling pretty darn helpless. The longer I waited for help, the more I felt forgotten and overlooked. My panic started to grow, imagining going home in this condition. All manner of thoughts flew around my brain. I started having internal conversations …” How the hell am I going to get into my house??.. OH MY GOD…my house has stairs!! I can’t walk and I have S-T-A-I-R-S …FML! …NO rails!!! Oh my god…Maybe I can use the backdoor…OH wait, that has STAIRS too. FARRRRKKKK .. How will I have a shower …sob… it’s inside a bath!!! AHHH… I can’t lift my legs!!! How will I reach the taps to turn on the water, it is at the top of the showerhead???!! ….sob… I’ll never shower again…How will I get my parcels?.. Clean my clothes?… …which progressed on to………. how will I sit in the sun again?… WILL I SIT IN THE SUN AGAIN? …Who will weed my garden?..MY poor veggies won’t live!!.. My POOR plants !! Forget the plants, how will I live??..sob…What will I cook?? CAN I cook???..oh my god, …gulp…I’M GOING TO STARVE TO DEATH!!! ?… LOL… I was a bit of a drama queen while processing this new existence! I grabbed my iPad, thinking some music videos would be a good distraction.

I stumbled across this life-changing video on YouTube.

It featured a man called Lance, who had tragically lost 2 people he loved, both within close succession. He processed his grief by building himself a fantastic tiny house. This really resonated with me. I was grieving the loss of my former self, the fit, healthy person, who only weeks prior, was carefree, hiking up mountains and roller-skating with friends. I was also grieving the loss of a multitude of future dreams. I guess you could say, I had resigned myself to being stuck in a wheelchair for the rest of my life. All my plans to travel, start a business, and find a partner, were instantly put to sleep the moment I was told this condition had no cure. Everything seemed helpless until I watched this video.

I couldn’t have clicked that like button fast enough on this video.I clicked, the minute I heard Lance explain that in order to live the life he wanted – he had to make the focus on what he wanted out of his life. He needed to give his mind a task, and his heart some healing. That was exactly what I needed to hear. Building a tiny house would be the project that would give me a valued life back. Lance had multiple income streams..including creating his own Hula Hoops from his 20 ft Shipping container home, nestled in nature…That was all it took for my brain to scream….” THIS IS THE ANSWER” !! It was like his words spoke directly to the part of me that had given up… It reminded me that I was more valuable than I gave myself credit for, I did have something to offer. My creativity was what gave me joy. It was what had won me prizes in the past. I didn’t need my legs, in order to work magic with my hands. I could build an art space to fit my disability. A light started to shine at the end of this dark tunnel… Suddenly I had found my purpose again.

What’s the problem ?

In a nutshell, I currently live in a rental property that I can no longer access. I have been stuck here for the last 8 months, while STILL waiting for appropriate mobility aids from the hospital. I have been searching for a solution to this problem , as it is no longer safe for me to live here. It sounds a little dramatic but it is what it is. I’m ready to give up on the health care system, but not on myself 🙂 I am hoping by sharing my story with you, I can start some interesting conversations to figure a way forward …not only for myself but for people who might find themselves in my position in the future! So… let’s get started!

My life changed the day I woke up and couldn’t lift my legs out of bed. I suddenly found myself disabled at the age of 49. It sounds cliche, but I was the last person anyone would have expected to see this happen to, after all, I was super fit, and ate an incredibly healthy, raw vegan diet. Overnight, I went from someone who walked absolutely everywhere, to someone who couldn’t walk at all. I became that person that I used to talk about, the person who had it worse off than you. As I fought for the things I needed to fix this, my eyes were opened wide to the ‘have and have nots’ in our health care system. I stopped saying it could be worse…as it suddenly was. I was constantly reminded that it was a shame I hadn’t had an accident. life would be much easier if I had. Instead, I got told it was a genetic condition that messed up my collagen. As a result, I wasn’t able to access private health care, get a claim accepted by ACC, or have help from a supportive rich family or friends. Instead, I got slotted into a group in my community, where the membership promises constant struggles to get any help from the services, you have a chronic illness nobody knows anything about, a disability that no one in your region will fund, a condition that even the Dr and rehab team have to google .., and no specialists in your region that know how to treat it. WOW…Sign me up! I can now say I am one of the many people, worldwide who fall through the cracks in the system. happy happy joy joy joy.

What I have discovered so far, is that Mobility Aids,specialised for your condition, are not handed to you, when you can’t walk, UNLESS you got the golden ticket and have ACC. The truth is, you spend a lot of time waiting for them. You spend a lot of time ringing around agencies to ask where your aids are or why they won’t fund them anymore, they punt you to another organisation, who claim it is not their issue, of course sending you back to the last place that you tried twice already…you give up for a while in utter frustration. You feel a flare-up of symptoms so go to bed to try to get the energy to fight it another day… You wake up ready to fight again … but guess what… you get THE SAME RESULTS! You have a cry, wishing that someone could fight this battle for you. I don’t give up easily though, 7 months later, I am still fighting this merry-go-round on my own and still waiting for the wheelchair, orthotics, and crutches.

Recently I had a letter to say that the wheelchair Occupational team will see me! I was happy to read that I was on a semi-urgent list, thinking it would be sooner rather than later…but NOPE, when I read further down the letter, It informed me that I had another 6-month wait and it was an assessment only! Talk about a letdown! That will be a full year waiting at home for a mobility aid. A full year away from being a part of my community. I dread to imagine what an urgent case looks like. I thinkin I am justified in my anger. I would not be in this situation if I had been diagnosed correctly while in hospital. The ill-fitting rehab and dismissal of my symptoms definitely caused the joint issues I currently have.

It isn’t the way I would have expected to be treated by my public health system. I find it especially hard after spending a large chunk of my adult years, offering respite and emergency foster care to some of my region’s most troubled teens and disabled children. I was awarded for my time devoted to this work, it felt like I had good value in my community. It is a little strange to find myself on the other side of the fence now. Admitting I need care, but finding constant roadblocks to receiving it. It’s hard not to feel let down and pretty disillusioned about our healthcare system. It is one that refuses to pay for a carer to come to appointments with you, A system that won’t pay your travel to see specialists outside your region because they are not in the public system. They have NO local specialists to treat you, but won’t assist you to get to them. A system that won’t give you ACC or Health Insurance because your condition is genetic, and not an accident.

I’m not here to dump my problems though. I’m here to get inspired …this blog is the start of better things to come and I am ready and waiting!

wtf..who stole my legs???????

This is exactly what I said when I woke up and found my balance was WAY off. To the untrained eye, it probably looked like I was under the influence of some pretty strong alcohol..If I was given a drink driving test, where I was told to walk a straight line, I swear I would have failed it! I started to wonder if it might be something neurological, as I had started noticing the occasional tremor in my hands. It didn’t help that I had recently watched a documentary on the celebrity, Selma Blair, who was diagnosed with MS. She had some very similar symptoms. I wondered if this might be what was going on with me..after all my walking was exactly the same as hers! Off I went to the doctor in a panic. By the time I got there, I was leaning to the left side, reaching out for nearby objects to steady myself. My speech was increasingly choppy and it was a struggle to retrieve descriptive words. It must have been incredibly hard to decipher what I said because I was asked to transcribe everything I said in the appointment! I spent all of 15 minutes at the Dr, doing a few balance tests (all of which I failed) , yet I was sent on my merry way with a referral to a Neurologist, with an apology that the wait was going to be at least 6 months, so in the meantime, have a referral to a physio, that might be 3 months. REALLY? I still struggle to understand how this was ok. There was no thought whatsoever to send me to the hospital for more urgent investigations. It definitely wasn’t normal to not walk or talk properly. Her lack of concern was quite disconcerting. I left that appointment very confused that more wasn’t done.

Ummm….hello….stroke ?!

In this state of confusion, can you believe I walked home?? Quite the achievement, I must say 🙂 This is a perfect example of my reluctance to ask for help when it is needed! 😛

After being home a few hours, I felt increasingly frustrated that my symptoms were not being taken seriously, How was I meant to wait months in this state. I was given no explanation for why this was happening, or how to relieve the symptoms. I decided to start recording symptoms on my phone. A part of me had an inkling of what was to come. I wanted proof to show the specialists, as well as to show my family what was being dismissed by the Dr . Everyone I showed could see something was clearly not right. I decided to sleep on it, with a plan to call Healthline in the morning. Secretly, I was also hopeful that I would wake up and everything would be ok again.. Unfortunately, that isn’t what happened. The next morning it went from bad to worse. I couldn’t lift my legs at all. I rang the hospital and unlike the DR who focused on my legs, they were more concerned about my speech, ” Ring an ambulance or friend to bring you in, NOW.”

I ended up being admitted to the hospital for 2.5 months. I was diagnosed initially, with a functional neurological disorder.. This meant that I was treated for the wrong condition entirely, meaning the intense exercises prescribed were making me worse, rather than better.

I currently can’t walk around my house without the use of mobility aids ( walkers, crutches ) I wear bracing to stabilize the joints that are dislocating and hyperextending. I am waiting on more bracing for fingers, wrists, knees, ankles, lumbar spine, as well as, orthotics for my feet. The wheelchair and specialised crutches .’ no idea ‘. The public health system is very delayed right now, but this is just another excuse to me because it was already a huge problem before Covid came along, and everyone knows it. Luckily my walker was approved ( 7 months later ) As a consolation prize guess what I got delivered with it…the bill…yep, you heard me right. I get to pay for the privilege at $17 a week! 😛

So for now I have to stay at home, isolated from my community, because I can’t get up or down the stairs to my house. I need carers to come and help me to shower as I can’t lift my legs over the bath, to access the shower. I also can’t reach the taps to turn it off and on. I can’t reach a lot of my kitchen , my laundry, garage, garden, or mailbox. If I have to go to a medical appointment, I have to pay someone to help me get out of the house and walk me down an incline to the road, then into their vehicle. This is definitely not how I saw my life turning out at 49… it has humbled me though and for that I am grateful.

This isn’t a pity post. I’m not looking for sympathy. I don’t think I’m less than, because I have a chronic illness. I am at peace with this. I was born with it, so knowing this, helps me to accept it is a part of who I am. It is a welcome answer, after 15 + years full of question marks and multiple incorrect diagnoses. What I would love, is to make some friends, like-minded people who can give me some positive encouragement, helpful tips and suggestions, to let me know if I’m on the right track…or not. 😛 If there is anyone else out there who is also stuck in this predicament, drop me a message. You are definitely not alone!

What’s the solution?

A Tiny House!

Seriously…It is that simple. The solution to all my problems, I believe, lies within the walls of a teeny tiny, modified, wheelchair-friendly house! It might seem like an impossible dream once I tell you, I have never built a house, have zero land to park it on, and, cough, no savings lol…BUT, as my Nana used to tell me … ” where there is a will Norelle, there is ALWAYS a way”.

This blog will be my visual “notebook’….anything that I think would be great in my tiny house will end up on these pages. This will include things I buy, repurpose, create, or am gifted. I have a pretty good feeling this blog will find the answers to many of the questions I have about tiny living. It seems like a great place to start conversations, I look forward to connecting with people who are living tiny, who might have some tips to share…I have my pen and paper ready to take lots of notes! Nice to meet you.