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.

[Guest_1055]

Hi Eagle and all,

Its Friday today, maybe you are still a bit better, you mentioned that on Wednesday. What kind of volunteer job do you do? Something to do with all the wildlife around you maybe? Definitely can tell you have a love for animals. 

Oh yes the guitar, did you end up playing? I have a flute. I haven't played it for a while though.

Are you any further along with applying for the Disability Scheme? 

I don't have a bath either. I have thought of asking a caravan park / camping type park if I could make use of there's. Not feeling quite bold enough though. Maybe you have one around you. 

Hoping you are having a lovely day and not feeling too much physical pain. Maybe you are resting

🪻🪻🪻

[Eagle Ray]

Thank you Shell,

I had quite a good day Thursday. Since yesterday I’ve been feeling fairly ill again. The naturopath has requested I make an appointment with him as he’s just had my latest test results come in. I suspect something is off because of how I feel. Will see him Tuesday. Then seeing the liver specialist in just under 3 weeks. The two of them work in the same clinic which is very helpful.

 I do volunteer work for a local council run service. I’d love to do something with wildlife. I did ask at a wildlife rehab place in a nearby town but they said it would be at least 6 months before they started taking volunteers as they had recently changed management. I might try them again when my health is better. 

That’s lovely you play the flute. No, I didn’t pick up my guitar after all. It’s strange how I don’t seem to be able to do it much. A few months ago some friends stayed and I played for their young daughter. I did enjoy that as it’s like you are getting to communicate through music.

I haven’t started the process to apply for DSP. I’m waiting to get all my test results and I need a letter from the specialist. I’ve been given the name of an advocacy person who can help me do it.

As far as baths go, there is a hydrotherapy pool in this town. That might be a good thing to do. Perhaps that’s something you could do if wanting something like a bath that is warm.

I’m not in too much pain, just feeling quite ill. It’s like the feeling of running a fever though I don’t know if I actually am. Covid tests always come back negative so it’s unlikely that. Hopefully test results will clarify things.

 I hope you have a great weekend Shell. Have you got anything planned? In any case, I hope it’s lovely and restful.

Take care, ER

[Guest_1055]

I am indeed sorry you are feeling ill Eagle Ray. Wish I could help so you would not experience it. Does it come and go this feeling of illness? Have you ever done water only fasting?  Maybe it's something else you could look into. I have done it quite a few times now over the last couple of years. Maybe the naturopath you see knows about this and can supervise

Were the test results ok?  Hope I am not being nosey. No pressure to share this if you would rather not.

You mentioned on another thread about our minds, body and spirit all need to be healed. I so much agree with this. Its all connected. Like stress, unforgiving of others, prolonged fear, anger etc affects our physical bodies. So important to forgive others that hurt us or hurt others. I am working at forgiving myself for hurting and abusing myself.

And yes a hydrotherapy pool, I wonder if it's salt water or chlorine. I have looked into portable baths wondering if they would be ok to use.

Nothing planned for the weekend. Next weekend we are going to watch a live performance of Little Women. I think we need things in our lives that we are looking forward to.

The fever maybe your body healing something within it, so maybe a good thing. Wish I could help you.

Just now thinking of you playing the guitar. Have you considered playing and singing in a park 

I am hoping you are doing ok today. No pressure to answer me again if you need to rest or anything 

[Eagle Ray]

Dear Shell, Thank you for your kind thoughts. The feeling of illness does come and go. At the moment I’m almost back to where I was a year ago where I have about 3 hours of the day where I kind of feel ok and the rest I’m really struggling to function. Right now I’ve come to a peaceful forest spot where there’s a bench to sit. Have been here more than 2 hours. I start to improve a bit in a place like this after about 2 hours. I haven’t seen the naturopath for the results yet which is on Tuesday.

 I agree totally with everything you say there about stress, unforgiveness, fear, anger etc. I’ve really had a lifetime of stress that really escalated in intensity from 2015 and I think my body is almost totally destroyed by it. In terms of childhood trauma I’ve forgiven my parents totally and have only compassion and gratitude for the positive things I have from them, even though the stressful experiences still reverberate now in the complex trauma fear reactions I have. But I’ve had multiple instances of abuse, bullying etc in recent years, and it’s like anger from that still surfaces. I had some acts of cruelty against me when I was at my most vulnerable right after my mother’s death. I recently processed some of that with my psychologist and I’ve had real moments of feeling it healed. Then my body reflexes back into distress, I can’t breathe again, I’m so fatigued I can barely move. It’s a struggle to get through the basics. This morning I did about 3 days worth of dishes that I couldn’t do yesterday because I chose to do a walk. If I exert myself at one thing that often means the rest of the day is out.

 I agree fever like symptoms can be the body trying to heal itself. It’s obviously the immune system trying to do something. I think if the pressure was off me to just heal, then I could do that. The DSP would provide that, but if I don’t get it I have to keep struggling to find work when I’m not well.

In the past I’ve pushed myself back into work again and again, even when in huge levels of pain. I’ve always had to medicate to work. You have to present like you are fine at work, even when you’re not. I’m just very, very broken. In the past I’ve been so optimistic and hopeful. That is my usual nature. Just trying to reconnect with that.

I have small birds around me in the forest. They always help. A little robin comes and sits about 2 metres from me each time I’m here.

[Eagle Ray]

I tried to drive to my volunteer job this morning. I got to the town before it and couldn’t go on. I had to email and say I couldn’t make it. I sat in my car a long time until the sun was beating on me too much. I’ve driven to a nearby spot next to a walking track. I’m lying in the back seat of my car. I can’t do anything else. I see my naturopath tomorrow and my psychologist on Friday. They are lovely, kind people. But I am just drowning in unbearable grief. I’ve realised that is what is flooring me over and over. And the exhaustion of having to keep surviving and not knowing how to support myself into the future. I’m so exhausted from having medical conditions doctors don’t understand. I’m exhausted from trying to explain myself over and over again and not be heard. The people who do hear me are not the ones who can provide the forms for DSP and Centrelink. I just hope the liver specialist will help me. I can’t find a good GP. I thought I’d found a good integrative one only to find her primary interests are in things like cosmetic procedures and trends like injectable nutrients, but not in people who don’t have lots of money and who have ongoing chronic health issues. The employment consultant at the disability employment agency recommended a good GP to me, even following up with him about me, saying he would call me the following day. That was many weeks ago and he hasn’t called. He is booked out as are all other doctors that seem like they would be potentially helpful. There are more options in a town an hour away. I’m just so exhausted from trying. I only have myself to get myself anywhere. It’s always been like this even when I was a very small child - no one there. No one hugs you or reassures you. I know my parents didn’t have that so I understand. It’s amazing they did as well as they did given what they went through. But I also watched their trauma catch up with them and destroy their health. I watched them die and I was the one trying to keep them and their spirits alive. My only remaining family member is emotionally detached and I cannot talk or share with him. I’ve supported him through major breakdowns he’s been through but he cannot be there for me.

I can see blue sky through the car windows and the trees around my car. There is a walk through forest, about 15 minutes, to where a cafe is. I might go there if I get hungry. I just heard a mountain bike go past as the walking track is for bikes too. I just need to stay here a while and maybe sleep. I’m in a nature place and it’s the only thing that restores me to any level of functionality. Nature is actually my family like the tree I climbed in the front yard when I was a kid. I know if I stay here long enough I will start to feel better.

[Guest_1055]

Hello Eagle Ray, it was a challenge to read what  you wrote, because I feel for you so much. But I am indeed ok. I wish that I was physical near so I could do something to help you.

Could you stay with that friend you said you have, the one you played your guitar for...the child. Your neighbour maybe?  I am sorry you are going through a lot there. 

Do you feel a bit better laying in the car near nature, I am hoping so. The blue sky can look very peaceful.

Maybe beyond Blue counsellors know of extra help near you. It does seem like you are in need of someone. Churches sometimes have people that may be able to help

I am sorry about your family member not being supportive. 

[Guest_1055]

Hoping you are okay 

[Eagle Ray]

Thank you Shell 🙏

Sorry to write such depressing things. I just had to get it all out. Please don’t take any of it on. It is my stuff to deal with.

 I know I’m not well and something is up. When I got home there was a letter from the pathology clinic that did my recent blood test. It was a bill for an additional test not covered under Medicare that had been done in addition to the ones initially ordered from the same blood sample (they took quite a lot of blood). I identified the testing code via an internet search and it’s one that’s done to test for two types of cancer. Somehow I’m not surprised. I don’t necessarily have cancer, but obviously the preliminary testing prompted these further tests. So in a way I’m having to accept the possibility without knowing yet. I’m seeing the naturopath tomorrow so I’ll ask him what he thinks about it, but obviously the liver specialist who ordered the testing is the one who will give me the results. I see him in just over two weeks.

I’ve sensed for some time something is wrong possibly beyond the liver disease I’m already diagnosed with. They did find a small mass on the liver on a scan in January but it was thought to be benign. The types of cancer the recent test is for are, as I understand it, forms of blood cancer. I mat not have cancer. I don’t know yet. But I do know I’m really unwell and something is wrong.

 I called the BB Helpline tonight and the woman I spoke with was very helpful and gave me some resources. I felt calmer talking to her and quite calm afterwards. I’ve had to survive through many things, so whatever is wrong now I know I can handle it and be ok whatever happens.

 I do feel very ill and have to drive half an hour again tomorrow to see the naturopath, but I will get there and rest in the car again if I have to. The friend I mentioned lives on the other side of Australia. I have a couple of friends I’ve made in this town, but not really close friends I’d necessarily feel able to divulge my current situation to and ask for help from. But it’s like other people can see I’m not ok. A nice lady who works in a local cafe came and asked me how I was the other day and came down and sat with me. It’s like other people can see something’s wrong.

 The BB person tonight said it could help if I relinquish fighting always to survive. So allow myself to let go. As I’m always fighting to keep going all the time. That’s really good advice and makes total sense.

Things will be ok.

[Guest_1055]

Not sure of what to say. But I am reading and listening to you. And hoping that helps you feel cared about.

And of course just let it out in here. 

🪻🪻🪻

[Eagle Ray]

Thanks for your caring thoughts Shell. The naturopath found only mild abnormalities on my microbiome test. He wondered if the breathing difficulty and cognitive confusion could be linked to something like a hidden mould issue in my home, though I’ve had the symptoms come in bouts prior to living here. I was very disoriented yesterday and left an hour earlier for my appointment than I needed to because I couldn’t orient myself to look at the time. I just got in my car and drove and only realised after I got there I didn’t need to be there yet. It takes huge cognitive effort for simple tasks. The naturopath doesn’t think the tests run necessarily mean there’s something like a blood cancer. They are likely standard precautionary tests.

I’ve had multiple traumas that have affected my breathing in the past. After somatically processing specific incidents with my psych my breathing difficulties alleviated last year. It was amazing to be set free from that. It’s like I have multiple layers of trauma and as one thing clears after a while another thing presents itself, wreaking all kinds of havoc on my body. My Dad had early life stress very similar to my own (including prenatal and postnatal stress) and developed a major breathing difficulty at my age similar to what I’m experiencing now which persisted for years. He never went to a doctor about it but after about nearly 20 years of it was diagnosed with Parkinson’s.

The more I learn about the impact of trauma on the autonomic nervous system the more it makes sense. The ANS automatically controls breathing and that can be profoundly dysregulated in ptsd. I’m getting some flashbacks at the moment as well which I am well used to and have had since a young child. It’s actually so normal for me but you just don’t realise it’s not normal for others until you get much older. I have a lot of preverbal trauma that isn’t accessible via conscious cognitive means. I just keep searching for ways to heal this. I recently had someone sing a healing song to me and that had such a healing effect. But my body reflexes back into a traumatised state quite easily.

So I think trauma is underlying what’s going on but it’s unclear if it’s manifested into something more than the liver disease. I feel very ill with whatever this is. I want to try to sing again even though my whole respiratory system hurts. I’m going to try getting my guitar out and relearning some songs I used to play. I healed a lot in myself before through music.

 I hope you are doing ok 🙏