Accepting disability

[Eagle Ray]

Hi, today I’ve realised I may need to apply for the disability support pension. I’m with a disability employment agency and they recommended it today and my psychologist last week. On good days I can go for walks and do a few things at home. Other days I’m struggling to function to do basic tasks. Today I could not even get my car key in the lock because I was so unwell and had to lie in a park for sometime before driving home to my town, realising I wasn’t safe to drive until I rested.

I’ve had a chronic pain and fatigue condition for 35 years. I’ve pushed through periods of extreme pain on slow release synthetic opioid meds in order to be able to work. More recently I’ve developed an autoimmune liver disease. It somewhat stabilised with the right treatment in recent months, but can progress to liver failure if it worsens and so I have to manage it with care. I have complex ptsd, anxiety and depression, the latter made worse by recent steep changes in hormone levels from perimenopause. I’ve always pushed through in the past, but I feel I am spent and my body is screaming at me it can’t keep going as it has.

But I feel a sense of grief, a loss of who I wanted to be and hoped for in life. I had a creative business idea but despite being technically capable I’ve realised I’m unlikely to be able to run a business in any great capacity. Accepting my limitations is hard and I think I just have to write that down here.

I may not even qualify for the DSP as it’s so hard to get it now, yet I’m being encouraged to do it. My future feels so uncertain. I want to feel independent and capable. I don’t like accepting my limitations and it’s hard not to feel depressed. Not sure if anyone can relate but just needed to tell someone how I feel. Living alone I only have myself to keep myself going and it can be a real struggle at times. There is no one to help me on days when I’m incapacitated and in extreme pain. I was a carer for years also and that has also burnt me out. I am spent.

[Learn to Fly]

Hi Eagle Ray,

Thank you so much for your kind words. I truly appreciate it. 

I love this song! But I have never linked it to my user name and I am so grateful you have brought this up to my attention. Because the lyrics of this song are exactly what I had in mind when choosing my username so this is such a marvelous coincidence.

I have just found the below as well and thought I might share it here:

"Everyone has tragedy in their life," Petty told ABC News in 1991. He was inspired by a pilot, who said the hardest part about flying a plane was coming down from the air. "You can lay down and let the tragedy overwhelm you, or you can fly above it, and I think that's sort of what I'm trying to say in that song.

I mean, how cool is that? 

[Eagle Ray]

Dear Learn to Fly,

That is totally cool! I hadn’t read that quote from Tom Petty before. I’m glad you love the song. He is a great songwriter. Another favourite song of his I love is Wildflowers. It has beautiful lyrics. He had a natural ability to write beautiful melodies and lyrics and songs that just hold together so well. I’m really glad the lyrics to Learning to Fly align with what you had in mind with your user name 🙂

Thanks so much again.

[Learn to Fly]

So true! Wildflowers is another wonderful song of his. Thank you so much for bringing his songs to my day. You have made my day 🙂 

Hope you also have a good one. 

[Eagle Ray]

You’re welcome Learn to Fly 🙂 I love Wildflowers because it is about gentleness and kindness, being a free spirit and following your heart.

Have a lovely day!

[Eagle Ray]

Hello, I just feel the need to communicate my current feelings.

I’ve just had a Telehealth appointment with my liver specialist. My main struggle at the moment is with severe fatigue and cognitive dysfunction that occur along with shortness of breath and loss of motor coordination. I’d done my research and found an alternative med that has been found to help fatigue and cognitive dysfunction in the liver disease. He agreed to it and we’re going to give it a go, closely monitoring my liver with regular blood tests. Therefore I will postpone the DSP application to see if I significantly improve.

In a way I feel relieved as I really want to be able to work. I want to restore my cognitive and physical functioning. If this is successful I may be able to. There is still the option of applying for DSP if it doesn’t work. I see him again in 3 months and will do blood tests monthly.

There is also the option of applying for the DSP in relation to complex PTSD symptoms, and I know my psychologist is willing to support me, but I want to at least see if I can improve the other symptoms and see how I go from there.

I’m grateful the liver specialist actually listens to me. The previous one wouldn’t engage or answer questions. I just really want to get as well as I can.

My blood test results were normal apart from being positive for antimitochondrial antibodies which is to be expected as that is the key diagnostic biomarker. But it shows the treatment worked out with the naturopath last year has continued to stabilise the liver. The tests the liver specialist ran I was concerned about are just standard precautionary ones. Even with the liver stabilised the disease can still cause major fatigue and brain fog which seems to be what’s happening.

I think I’m just writing all this as I live alone and have to process and work everything out alone. Sometimes it just helps to tell someone what’s happening. Fingers crossed the obeticholic acid which is the new med will really improve things. I feel vulnerable with the uncertainty but glad to at least have a strategy in place.

[Guest_1055]

Hope it helps you a lot by sharing what is happening. I am reading and listening to you.

[Croix]

Dear ER~

I guess not having to apply for the DSP at the moment has a couple of up-sides. First off you do not have the dragged out uncertainty following the application, particularity as results the first time could be refusal, and then starts a longer game.

Also as you say you would prefer to work, and while you might be able to do a little on the DSP it's certainly better for moral if you are independent.

The new medication sounds hopeful and the sooner the fatigue and brain fog reduces the better. You can stop metaphorically wading through mud.

Flippers X'd

Croix

[Eagle Ray]

Thank you dear Shell,

 I was feeling a kind of grief and loss in relation to the future. I don’t want to feel like I’m not going to improve. The paperwork and points system they use to measure for DSP is all about demonstrating that you’re not going to improve which can feel quite depressing. By trying this last option with the medication I’ll know I’ve tried everything medically available. The good thing is the liver is stable for now. I know from my research the severity of fatigue and cognitive dysfunction does not reflect greater liver pathology, at least in the short term, though can mean a poorer prognosis in the long term. They are just symptoms they don’t have a definitive treatment for yet. But recent studies with rodent models (poor rodents) demonstrate obeticholic acid can help with those symptoms.

In the last week I’ve only managed to have a shower every second day as I’m just so weak. I’ve managed a couple of walks with lots of rests but I have to lie down for hours after. That will be my entire exertion for the day and I have to give up on other things. I’m better than I was a week ago when I could not leave the house, do simple household tasks or even get up most of the day.

I’d love just to be able to do a part-time job. If I can improve I’d like to try something like just the local supermarket or, possibly better again for me, returning to be an education assistant which I’ve done before. Though compared with the city where I worked at various schools there are fewer options here. But would like to at least try volunteering as one to ease my way back in. I love people and any sense of helping people. It feels so rewarding to help kids.

Sorry, just rambling away here. Basically I want to do something and not feel so limited. And I want to undo the processes that have led to the formation of this disease. I’m sure it stems out of trauma. That’s what happened to my parents from their trauma leading to their health collapsing. I want to break the pattern and recover and be able to follow at least some of my dreams. I think being creative is really helpful so will do photography when I can and songwriting too. I would love to travel around Australia one day so I hope to find a way to that somehow. I’m quite determined! But possibly have a lot of rest and recovery to do first.

[Eagle Ray]

Dear Croix,

Yes, I had that exact thought. That the first attempt could be a refusal after the efforts of all the paperwork. Part of what the specialist has to write for the application is to state all the treatments tried and any more that can still further be tried. This way I will have tried everything currently known as an approved medical option. To do the prescription today the specialist had to get special approval because of how the med is scheduled. So I’m really hoping it works! But if not, DSP is still an option.

 I’m a determined little eagle ray! I want to swim with the other eagle rays, dolphins etc. And of course hang out with cool walruses (and cats if you are reading MK, and dogs who are my soul mates, and every other living creature on the planet).

Thanks for crossing your flippers for me!

[Eagle Ray]

Really struggling today with mental confusion. Decided to go to a neighbouring town to print off the prescription sent to me, as I don’t have a functioning printer and the library is closed here. By the time I had a shower and got dressed I could not remember why I was wanting to go to the neighbouring town. I felt lost, overcome by past grief coming up again and didn’t know what to do with myself.

So I drove 10 minutes to a nearby forest spot that I find very peaceful. I walked about 50 metres to a bench on a forest walk. That left me really struggling for breath. After two hours sitting there my breath slowly started to regulate somewhat. I was able to spend another hour walking slowly and stopping and resting along the way. It was during this walk I finally remembered that I’d planned to print off the prescription to take to the pharmacy at the other town, by which time it was too late to follow up today.

My whole system is so broken down. I have wanted to get my dinner since getting home but can only lie under a blanket. It’s like I have to break down over and over. I struggle to breathe after eating too so it’s hard to look forward to it. I just get no help from doctors as these have been worsening symptoms over several years. What the liver specialist has prescribed may help. He is more helpful than the GPs, and the naturopath is very helpful.

I’ve just always been so optimistic my whole life but sometimes I can’t do it anymore. I feel I have no family. The forest today did feel like family, all the different small birds and beautiful trees. But sometimes I feel I’m on the far outer reaches of the human world and I can only look into it from a distance. That I will never fully belong to it.

 I am beyond exhausted. I should hopefully start to feel somewhat better with the new medication. Otherwise I don’t know how to go on like I am. I think things will get better, I hope. I felt hopeful yesterday because I imagined being able to work again. To have some kind of identity and belonging to something. But it’s so hard trying to keep getting there.