Lived Experience Forum

[ClockFace]

@Dimity 

The compression fractures were found in the original injury but healed as far as I know. The fractures that have come up recently seem to be new. Im getting an OT just to do an assessment for my NDIS application. Ive had physio but they dont help much and more often than not playing around with my back, doing stretches etc flare it all up. 

Ive had a couple Neurotomies and they sent my pain off the planet. One of my pain medications looks like it has caused hypersensitivity. Ive ended up on unbelievable amounts of pain relief at different times.

Over the years I have had all sorts of people on my team, currently its a pain specialist, Neurosurgeon and my GP.

[Dimity]

Hello @Patchworks @Appleblossom I'm glad to hear you've avoided surgery for your bulging discs by rotating activities and keeping moving. I guess it's when nerve impingement gets worse it might be needed as with your husband @hanami. I'm trying to keep walking but it's occasionally crippling and the osteopath says there's a lot of muscle wastage. Do you have general fatigue with it? Perhaps that's my depression. 

I need to follow your example and keep up with the gardening! Still working on bends vs squats.

@tyme I wouldn't discount your experience... it's probably important to manage your condition carefully so it doesn't worsen. So keep up those exercises. 

[Dimity]

Hopefully the OT can assess your home situation as well as your condition @ClockFace in identifying where NDIS can help. I appreciate it's pretty complicated. Do you have any idea how long it will take?

[ClockFace]

@Dimity Im probably expecting it to take until the end of Jan before Im in a position to make my application. Im currently getting evidence together. Its going to take me a long time though because I have a heap more illnesses and disabilities that I am applying for the NDIS for. I have skitzoaffective disorder, arthritis in my spine, knees, left hand and wrist, Type 2 Diabetes, Noise Sensitivity, Neuropathic pain, and Calcific Tedonitis (kinda like bone growing instead of tendons in my shoulders). They are investigating my sleep issues at the moment as well as my dizzyness and wonkyness I get in the morning and at night. I have a heap more issues that dont meet criteria  as well. Bladder cancer, Hidradenitis Suppurativa, sleep apnea, restless legs, Venous insufficiency, migranes, GORD, etc. 

For the past nearly 9 months, I have been seeing specialists and doctors. Having scans and tests galore trying to get to the bottom of some of my issues. Im on like 30 different medications a day. Ive got a few more specialists for the year but the one Im 'looking' forward to is the MACS clinic at the end of January. Its like a bunch of specialist reviewing my case, my medications etc trying to get some answers and help make a road map forward, probably the best opportunity I have on the books to get somewhere. 

I went off work at the begining of the year on extended medical leave, thankfully my employer provides income protection though the cut in income hurts, especially with the increase in medical costs. Some months, many of them the costs are in excess of $2k. Leaving me around $1.3k a month to live on, or much less. Thankfully my Dad is helping though its all a loan, so I have to at some point pay him back somehow. Racked up like $25k with him so far.

[Dimity]

That's a lot happening for you @ClockFace . I hope the Xmas-New Year shut-downs don't impede you too much. The conference of experts sounds promising...

[Shaz51]

Hello @Emelia8 , @Dimity , @ClockFace , @tyme , @Patchworks , @Zoe7 

Painful morning this morning 

Hope you are all OK my friends ❤️ 

[Dimity]

Hugs @Shaz51 

[Patchworks]

@Shaz51 I'm sorry to read you're having a tough morning. I took anti-inflammatories to be able to do my housework. I'm fortunate to be able to do it myself as I can't afford cleaners lol. Wishing your day improves xx

[Emelia8]

Hugs @Shaz51 😊♥

I am very fortunate in that I have a cleaner come in for two hours once a week,  for which I am very grateful. I could not manage without her. 

@Dimity @Patchworks @ClockFace @tyme 🌷🌻♥

[Dimity]

@Emelia8 @Patchworks @Shaz51 @ClockFace @tyme @Appleblossom hope you're doing alright. I was given a set of exercises and told  I should feel stretches not pain (ha). Getting up and down from floor level is a trial in itself. I'm only 2 days in so will try to persevere but I doubt I can continue if it doesn't improve.