How the hell does this make sense?
MND is my reality my life is now ebbing and flowing to the rhythms of my disease.

This is not how I planned my life to go ,

I loved my life , my family and all the wonderful challenges that were part of my day to day .

I don’t love my life now !

Every day I wake up to the knowledge that something may have changed. Is this the day ?

Or have I managed to stay the same for another little bit. Prognosis is unknown but progression is inevitable ,no treatment or cure just managing the issues as they arise.

The days seem endless most days I am home alone . Sometimes I see my family (at the moment my husband and son ) in the morning before they leave for work, but most days I don’t. They are both active and exercise after work so that means they leave at 7am or earlier and are home for dinner around 8pm . Sometimes I have an appointment so I leave the house on the scooter for that . Otherwise I am home.

I have loads of friends and family , but few who call or pop in .

It’s funny you don’t know who your true friends or tribe is until you find yourself incapacitated somehow.

When I did my costume and millinery course I felt I had found my tribe those people who shared my passion and spoke my language . I now have little contact with them . If you can’t be there amongst it you are forgotten.

The world is very selfish in a lot of ways . Everything is set up for the able bodied and there are some concessions for disabled people but not as many as there should be.

The decision to leave the house and where to go is completely governed by what is accessible. Are there footpaths and ramps ,are the bathrooms accessible. All these are taken into account before I agree to go anywhere.

I hate that it’s not just a matter of hopping in the car and going like it used to be. I have given up my license as it’s not really safe any more for me to drive . I only enjoy the experience if I don’t have to walk and as I can’t lift my wheelchair into my car or out it means I couldn’t use the car on my own before. I use the scooter almost always. So if it’s raining I stay home.

Life is a daily challenge, never easy , rarely fun , sometimes it’s ok.

Sometimes not so much.

Trying for positive energy means not allowing myself to be bored it requires keeping busy .

Anything that takes my mind away from myself is good. Sewing helps but managing fatigue means it takes longer and it’s hard to feel good about making clothes for myself when I don’t go anywhere much and I can’t wear a lot of my favourite styles of clothing anymore . I upload them on the blog and then keep or give away . My hands are an issue these days they fatigue , so I have been advised to try not to overdo it. So that sucks. I am a tactile creative and now I am just supposed to stop using my hands as much.

I was sitting at the sewing machine and my fingers are fatigued so I needed help to thread a needle. Then I need to get food as my body winds down if I don’t eat . I can’t eat around my sewing so a break is needed. I used to sew all day and forget time , just lose myself in the process that’s not possible anymore , my body demands attention and dictates my output. It is constantly frustrating.

I plan my time energy by needed , duration possible And breaks required. It’s hard for spontaneous creative urges to be successfully produced when there are roadblocks everywhere.

I hope I can continue to create for as long as possible we shall see.

Sue 😏


About suebsewbyme

Australian fabric fanatic who loves to sew and create interesting garments . Creativity is my mantra.
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8 Responses to ALS WTF

  1. ourpipsqueak says:

    My heart aches for you and I know exactly how you feel. I only have my older sister left and wonder what will happen if she goes first. It’s so hard to have an active mind but a very uncooperative body. In my mind I’m still 35 and fashion forward, in reality I have trouble getting dressed. I wish you better days ahead than bad

  2. bonnies2023 says:

    Your words are hard hitting even to a stranger.your description of every day life is so powerful..I have had severe illness of family members and I agree with you on how people just drop away..I had both my mother and husband pass away within a month of each other but this just makes me grab onto life even harder.Thinking of you and hope there are moments of peace.

    Sent from the all new AOL app for Android

  3. Susan Bell says:

    This was so hard to read but appreciate your honesty. My heart goes out to you and rarely a day goes by th

  4. Susan Smiley says:

    Your words give me a much better understanding of how tough life is for you and others with disabilities. Thing’s definitely need to be improved.
    Sending you lots of love Sue.

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