A New Style

Posted on January 21, 2025 by suebsewbyme

Earlier last year , I had the opportunity to go to the sewing basket in Newington. I love going there lots to choose from and I can move around in my wheelchair easily. My carer came with me and I picked up these.

Wool and a vintage lining fabric

I managed to get about 4.5metres of the woodland I made a cropped version of this jacket

My jacket with my son Conor

The jacket is comfortable and warm it’s the right length for the wheelchair so that it works. Made it to wear on a Canberra trip.

I am sewing all the time depending on who is caring for me not all my carers sew. It is the only thing I feel connected with. When I am Sewing I can get my carers to do all I can’t ,under my direction so I still have control.

My life now consists of diminishing control, as my body loses function I am losing my ability to be independent.

I am completely reliant on carers for everything.

I see people less as they don’t come over. I now have my own disability van so I can go where I want to and get to all my appointments easily.

I hope you had a wonderful Christmas and get all that you need in the new year. I don’t know when my loss of function will be complete. So who knows if last Christmas will be my last . One day at a time.

Take care Happy Sewing 🙂

Sue

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Time stops for No one !

Posted on November 7, 2024 by suebsewbyme
I found this on facebook a woman (whose husband and 3of her children all died from ALS )kept it and when she passed away it was found by a surviving child.

This message really resonates with me. Life is an adventure that changes all the time in so many ways. For me ALS/MND has been an ever changing shit show. A constant disappointment , no hope, no promise of tomorrow just the ever present loss of capability. Each day happens with hoops to jump through to get by and all the things I take and do to try and maintain my muscles. I now have carers 7 days a week. They do everything I can’t . I would have no life without them.

I am still sewing but not great at the photo taking part anymore. I will try to get some.

Heading into the Christmas period makes me reflect on what has changed. I don’t walk anymore. I need a hoist for transfers. I spend my day in a comfortable wheelchair that I can’t straighten my legs in, because the company doesn’t have the rights to the program .

It is disgusting that this is not a universal program for all wheelchair users.

My quality of life is dependent upon the care I get and the NDIS responding in reasonable time to my requests for items to meet my needs.

Another thing that I am finding hard , is people when they are talking to me grab my controller on the wheelchair. This is very scary if they touch and it’s on who knows what may happen. If it’s off and they lean on it and break it then I am stranded. It is so annoying, it’s like because I can’t get close they need to lean in , I am not deaf just disabled.

I hope you are doing all you can to live life to the fullest.

Take Care

Sue 🙂

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A Shacket for my son

Posted on September 23, 2024 by suebsewbyme

Hi there as usual I am still sewing lots but blogging less. I made a Shacket for my son for his birthday. I have 2 sons one in Melbourne ,this was for him , and one in Canberra he had 2 bomber jackets made previously.

This is my inspiration

Inspiration pic

I purchased the fabric for this from The Sewing Basket at Newington last year .

It’s is a lovely rich green but not thick wool .

I decided to underline it to give it a more robust hand and also for comfort.

Lining
Front view
Back view

The pattern I used was a shirt pattern.

Pattern 1271 vintage vogue

I managed to deliver it to him recently, his birthday was in July, but we caught up in Canberra for a weekend. That required bringing a carer and hiring a disability van but we managed it. The three guys had a great time and I did as well, helped by knowing my wonderful carer was looking after me.

My life is light years away from where it was. MND is a soul destroying disease stripping from me all the little things that I love to do , without my carers life would be awful they help me to live and engage and create. They are also company I spend a lot of time sitting and waiting. I can’t do much at all ,without them I can’t really live well.

The caring friends who make time for me are also incredibly important in helping me to stay motivated.

They pop in bringing lunch or morning tea they help me with my sewing or just spend time filling me in on all that is happening in their lives. I go to trivia once a week at night with one friend and my carer and my nephew and an assortment of others who come when they can . It adds interest and social engagement to my week.

I hope you are enjoying life and being creative however you can.

Happy Sewing 🙂

Sue

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Another day passes still here;

Posted on August 2, 2024 by suebsewbyme

My days are usually planned around my activities such as they are and my appointments. If I have none then it’s sewing or shopping depending on my carers.

I have 3 wonderful carers 2 of whom enjoy sewing and so I can plan my time accordingly.

I don’t see many of my friends regularly. I have 2 who call in or schedule catchups , lunches and they have organised facials for me at regular intervals in my home and they are there for me . One has even purchased a ramp so I can visit her in her home she is the only one of my friends to suggest this. I don’t get invited to peoples houses anymore.

I have heaps of family and friends but see them sporadically. My sister comes to stay every month which is fun. My children live interstate and overseas.

My life is very isolating.

Waiting on overlocking

I have been sewing fairly frequently with assistance from my carers. They do the cutting they do any pinning and the hand sewing as needed they also do my overlocking . I recently made another 2 piece outfit . I used a stretch jacquard fabric .

Back view
Front view

The patterns used were

This top
These pants narrowed in the leg .

I haven’t worn this outfit yet it’s a little bit cold now . I plan on wearing to my next clinic visit. I go to the MND clinic at Macquarie every 3 months. My life continues to bring unwanted changes the reality of my condition. But I am still here.

Take care , Happy Sewing,

Sue 🙂

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A Party Outfit

Posted on May 28, 2024 by suebsewbyme

I had a significant birthday recently and a party to celebrate. This was a wonderful night .

Before my diagnosis my plan had been just to sneak away and celebrate with my children and husband. That is no longer easy to do . So with the help from my wonderful carers I made my outfit for my 60th. Family helped make my party happen along with my carers.

My decision was to make a top and jacket using fabric from my stash.

I used this pattern for the top
The yoke detail gave scope to change.

I used some silk organza and silk dupion for the top elongated the sleeves and used shirring elastic for detail.

The top

It was comfortable to wear and worked well.

The jacket fabric silk and sequins
Tried and true jacket pattern again

This pattern works really well with the wheelchair it’s not too long or bulky.

Front unfinished
Back unfinished
Jacket and handbag finished
At the party

It was great night my costumes were on display as well as my hats and paintings. So my friends and family could see them .

Some of my costumes
The hats set up before the party
My paintings
Other costumes

The party was at a local Art gallery friends and family gathered for a great evening.

The cake

Happy Sewing,

Sue 🙂

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The Other One

Posted on April 23, 2024 by suebsewbyme

Hi finally I have finished the other jacket fog my son. A bomber jacket in green denim with a knit lining.

Back view
Lining
The Happy recipient

This pattern is a great style of jacket my son loves both jackets.

I am pleased to have them finished with the help from my carer who has done all the hand sewing for me.

Happy Sewing 😊

Sue

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A long time coming.

Posted on March 26, 2024 by suebsewbyme

Hi there, I started making a pair of bomber jackets for my son last year . My hands were working a bit better then and I was making use of both machines the industrial and domestic. Over time I realised that I could no longer do hand sewing in a satisfying time frame. It takes me weeks for something that previously could be done in a day.

I have finished 1 jacket so far . With the help of my carer who comes a few days a week to assist me. She does any cutting or hand sewing work for me. My time limit to work on my sewing is about 2 hrs that’s all I can do before my hands pack it in.

This jacket is made from moleskin remnant from the sewing basket and also black denim I had in my stash. The lining is silk from my stash . The elastic I had and buttons as well .

Moleskin
Silk for the lining
Front
Back
Lining

The denim remnant I used in this jacket hadn’t been pre washed unlike the silk and the moleskin. I always prewash natural fibres to be on the safe side. They can shrink . The colour was coming off the black denim onto our hands as we worked with it . So we washed the jacket after it was finished.

The jacket fits well and I think will be worn a lot when the weather cools down.

Happy Sewing,

Sue 🙂

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A little alteration!

Posted on March 18, 2024 by suebsewbyme

I recently was able to go to the Eras concert in Sydney.

I had discussed my options with my daughter and she suggested that the alteration of this dress into a top would be ideal.

The original make

Changing it into a top would fit with one of the dress styles worn by Taylor Swift . I cut it up to hip length and using the extra fabric I added wide sleeves to the short sleeves on the dress. I also added a frill to the front edge , the good thing about embroidered mesh is it doesn’t fray.

The Top
Both of us ready.

The top was easy to make and comfortable to wear for the time we were there. I also made the pants I am wearing, they are double layer pink silk chiffon. I used the same elastic waist pants pattern that I have used recently. V1914

This is the pant pattern

I am pictured in my electric wheelchair this enables me to get around safely now . It is faster than my scooter and more supportive so I tend to use it most of the time. It does mean that I now need special transport to go anywhere not local . But it is good.

My life is all about compromising now in so many ways .

Happy Sewing ,

Sue 🙂

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Not again !!!

Posted on March 6, 2024 by suebsewbyme

What is one question you hate to be asked? Explain.

The question I struggle with is how did you find out you had MND / ALS ?

Having to explain the devastating facts of my illness repeatedly is incredibly difficult. Reliving the devastation of that makes control hard to maintain.

The expectation is that I will be stoic and even tempered upbeat because I have always been that way . That is so tiring .

Some days I don’t have the energy to be cheerful. Because I am looking fairly healthy people are always assuming that I am fine they have no concept of my life each day . I now have carers six days a week. To help me .

I listened to a podcast recently , the neurologist that I will be seeing is interviewed and this is the best way to hear about the reality of my life .

The podcast is called “Let’s talk MND “

https://open.spotify.com/episode/59sgjb6O7AcvmUBJZvB4UU?si=g_JfZ919RJOjScLTI0xpgg&context=spotify%3Ashow%3A4WmtdSBhyuFX4ZB1Auzq2O

I hope you find it informative.

Take care

Sue 🙂

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My love affair with Fabric

Posted on February 14, 2024 by suebsewbyme

I have always loved fabric ,the texture, the variations I dream of fabrics and what they can become. Over the course of my life I have often added to my stash fabrics I just needed to own but had no clue what they would become. One such fabric is this silk embroidered organza . I first saw it in 2018 on a roll in a local fabric store that is now gone ,a Covid casualty. I kept looking at it until there was only 1 metre left then I had to have it .

Gorgeous green silk

I decided that since I only had a little over 1 metre I would try to use it all . I used French seams . I made a self drafted top with making use of the width of the fabric. I also used one of the embroidery flowers to hold the front .

The finished piece

I made this top about 4 years ago and have never worn it. Now with all the changes in my body from my disease I never will. So I am giving it to my daughter to pass onto her friend. As a thank you for her generosity. I am very happy to pass on my creations to others now that I can’t use them .

The reality of my life is that I need to pivot. With each change or new challenge I reassess my approach going forward. Inspiration is all around.

Don’t you just love when something sparks your interest makes you want to try and do whatever it takes to realise your idea.

I still try to create but the limitations my body places on me is a real buzz kill. Not enough time before fatigue, so everything takes ages to do .

Chipping away at each project .

I hope you have an amazing creative week.

Happy Sewing

Sue 🙂

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