Lived Experience Forum

[Gypsy-67]

Hi folks. Hope you're all doing ok.

I've been unwell for the last 18 month's and it's been getting worse. It started with tiredness. Not the sort of tired a good night's sleep will fix, I mean the kind of tiredness that starts at 10am and I white knuckle it to between 2 & 4pm then I have to go to bed. Then there's the unintentional weight loss, I mean 43kgs without trying, I just lost the desire to eat. The clincher was when my left leg from the knee down became numb on the top of my foot & up to my knee was numb & then I realised I couldn't move it either. Slight panic stations.

Then the test's started. Couldn't tell you how many blood tests I've had. I've had a brain MRI, a brain CT scan with contrast, I hate that, a full torso CT scan, a PET scan & 2 more CT scans with contrast. I go to the next town, I live in a little country town that has 2000 people in it & I love I, but it does make life more difficult when you have so horrible disease because the appropriate medical care isn't available so I have to do a 600km round trip to Ballarat or a 110km round trip to Horsham. Thankfully I only have to go to Horsham to have the CT scan on my brain stem then I'll have a piece of paper to make the NDIS get onto it

 I'm super lucky that my sister has aaye who is a NDIS case worker, who is now my case worker so she's sorting out all that mess.

The hardest part has been telling my kid's, who are all adults & have families of their own, that their Mum has 2 to 5 year's to live & the end bit is going to be horrible. I've had to tell my close friends, Sue said she thought something was wrong for a long time. I'm in Mildura at the moment & I messaged her & said I'm here come say hello I've got something to tell you. She had a feeling it wasn't going to be good. She was thinking it was my liver coz I've been having trouble with that from time to time coz I nearly split in half in a car accident when I was 18. But no it was much worse. She cried,  I cried. Mostly coz we  thought we had plenty of time to catch up. Just goes to show you never know what's around the corner.

Thanks for listening to my dribble. I'll try not to make it so long next time.

[Willow_26]

Oh my gosh your feelings are valid.
You have alot going on.
Your leg all numb, definately know what thats like
Spondyliethis nerve pain. My left leg is same as you, it's horrible hey. I have the addition of burning pain, numbness/pins and needles sensation all over constantly.
I'm just about unable to move at all now.

Does your sister work with people in TAS.
Absolutely no support since November last year and my health is getting worse.
I'm just about ready to go

[Jasper_123]

@Gypsy-67 

I'm so sorry to hear about your diagnosis and the grief it has brought into your life. I don't have much words I can say but I'm glad your sister can act as your caseworker and help you get supports in place. 

https://www.iamals.org/action/join-a-support-group/ 

^ I found this online support group that has weekly virtual meetings which may be of interest to you. 

[Gypsy-67]

Thankyou so much for your kind words, they are greatly appreciated. I will have a look at the website you suggested as soon as I finish this. Thanks again.

[Gypsy-67]

Hi Willow. I'm so sorry to hear about the trouble your having, and you're right it sucks. It's not my sister that is the NDIS case worker, it's her mate Kate, but I can certainly ask her for you. Never been to Tassie, but I hear it's really beautiful.. Come into this site everyday if you need to to get some support you definitely need. Sending hugs and strength.