Today is my usual day to blog about my sewing or life or both . Today I awoke at 4.30am to noise. I have been sleeping in my lift chair for the past 2 nights , my bed was dismantled and my new electric bed arrives today. Sleeping in the chair doesn’t give me a restful night. Some people love it , me not so much.
I am also getting my accessible bathroom fixed today, the vanity and mirror that were put in are not wheelchair accessible. Also the door is too hard to close.
I also have a PT session and a few appointments at home with members of my care team. So I am sitting on my scooter at the front door waiting on the arrival of the bathroom guys.
I have a video doorbell but it’s just easier if I am close to the door.
I dream of my fabric and what I want it to be but my limitations make it frustratingly difficult.
I do some , but it’s not fast and possibly not as good as it once was . My recent makes are not ready to photograph but include a pair of pale pink silk chiffon wide leg pants . Also a bomber jacket for my son .
The outer shell is a green denim so it should be interesting.
I am using grey and white striped ribbing for cuffs and band and it will have self collar. It is a work in progress.
I have a wonderful friend coming to sew with me tomorrow afternoon. She will help with all the fatiguing things . Hopefully we get lots done.
A thought that I had today is that my condition is terminal but we are unsure of how long I will have.
I think about all the people who say they care about me and the small handful of people who really show that they do. I have loads of acquaintances but those that actually do make time to visit or call or text are few and far between. I have loads of family as well so being in this situation makes me see who really does care.
We are all alone in life for what ever comes along you just need to understand that .
Update on today,
The bathroom is not finished but will be tomorrow.
The beds are in sheets and covers to come .
I have beside me a silk kimono jacket that I am deconstructing so I can use the fabric . It will take awhile . I think that’s enough for today.
I hope you are able to be creative,
Take care,
Sue 🙂
suessewbyme 
That will great for you I hope the bathroom is completed tomorrow.
I pray for a restful sleep for you in your new bed.
Happy sewing with your friend.
Sending love
Susan 😃
Very true words. It’s amazing how much a text, facetime, phone call or even a postcard can mean when a visit isn’t possible. But making time to hang out is the best part of friendship. Ihope your friends read this and take it to heart. It’s changed my plans for this weekend.
Hi Sue,
I have been reading your blog for a while. Returning to study has shown me new possibilities regarding technology (I am not studying OT or anything related to this field, so these are also suggestions). You have probably had lots of advice from you OT about products that can make parts of life a bit more accessible. You mentioned two posts ago that you had trouble accessing electricity. There is a product in our nationwide, green hardware store that enables the user to turn the electricity on remotely. It acts as an energy-saving device but may be helpful to you if you want to sew. It could mean your machine is set up and ready to go and you just have to power it up using the device.
Regarding being able to go out, I have seen products that will open and close doors and gates electronically that may be useful to you. Again the OT should be able to advise you, or members of the ALS community may have great suggestions. I am also happy to communicate with via email.
May you needles be sharp and your thread remain untangled,
Jasley
Regional Victoria
Thank you 🙏 yes my OT is working so that I can open the door and gate and we are looking into the other issues I am needing more care these days so there will possibly be someone there to help.