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.

[yggdrasil]

Hi Eagle Ray,

David35 has already said everything I would have thought to say beautifully, so I won't repeat it, but I feel for you and wish you the best as your pursue this new stage of life. Look after yourself,

yggdrasil

[Eagle Ray]

Thank you so much yggdrasil. I really appreciate it.

[David35]

My brother is a police office, so he has a fair bit of trauma from work. I think our problems were just one more to the mix. So I think you're right. It was more a reflection of his own inability to cope with mum's illness, rather than a personal reflection on me.

My dad used to have this saying "Nothing is impossible for those who don't have to do it". Meaning that it's always the people who don't have to do something who criticise those who have the responsbility of doing something. It's far easier to sit back, do nothing and then complain rather than lead by example.

[HelloGail]

Hello Eagle Ray:

So sorry to read that you are in physical and mental pain, it must be draining and living alone is also disabling. I have been on the DSP for a long time now and it is hard now to get it as there is so much paperwork and telephone interviews. There is a application form including medical form that your doctors and specialists have to complete. It can take up to six weeks after forms are submitted when you get the first of 3 phone interviews and so it can take months once it is approved and that is if it is approved. But you sound like you have business skills and may be able to get through the process. I suffer from lumbar stenosis and have a mild curvature of the spine but constant anxiety has been with me all of my life and so in my teens it became the norm. I never got to learn to deal with it until I was aged 23 after finding a social worker but its hard to tame once your an adult, it seens. Best wishes.

[Eagle Ray]

Hi David,

That makes sense. I know my own brother couldn’t cope with either of our parent’s illnesses. He describes himself as emotionally avoidant so in a way he knows. I imagine your brother deals with some stressful things at times in his job, and so kind of keeping a lid on emotions might be a coping mechanism.

Yes, I think it’s true what your Dad said about those who criticise are not the ones having to act and take responsibility. Even with things like being a food critic or film critic, for example, I’ve thought before about how being a chef/cook or film maker is so much more the challenge than being a critic. You sometimes hear about surgeons who finally really learn empathy for patients when they experience a health issue and undergo a major operation for the first time themselves. It totally changes their perspective on what the experience of a patient is like.

[Eagle Ray]

Hi HelloGail,

Thank you for your kind words. I’m sorry you’ve had the lumbar stenosis and anxiety too. I imagine the lumbar stenosis can be quite painful. 

Yes, it seems pretty hard now to get the DSP. One of the consultants at the disability employment agency I’m with said she has a client who cannot stand up for more than 5 minutes and she cannot get on it. I have to be prepared that while I’m being encouraged to apply for it, there’s a considerable likelihood the application won’t be approved. I then know that means a continual hard slog for me trying to find work I can do and manage with my health situation. It’s scary at times because I know if I do work that’s more than I can handle my liver condition can deteriorate and ultimately lead to liver failure. It’s known to deteriorate with stress. I do not have the strength to go through a liver transplant so I’m trying to move forward in a way that prevents that outcome. I have to stay calm and look to what I can do that supports my health, mental and physical. I will wait until I’ve seen the liver specialist next month before doing an application so I have an assessment from him and the results of recent tests. 

Thanks again and best wishes to you too,

ER

[HelloGail]

Hi Eagle Ray

Thank you for your reply. I really feel for you with what you are experiencing with liver failure, is there a medical term for this disorder? Forgive me if you have previously stated it but my memory is terrible, forget things in a few seconds.
I want to share with you my liver experience so you know I have some understanding of the symptoms you are experiencing. At age 15 I contracted HepB and was very ill. It was early 1976 I contracted it through a needle. I was a wild child only 15 and had been living rough but still a virgin (just want to put that out). I had a lot of friends but they were into drugs, mainly pot, hash & buddah. I was a naive kid and only tried Heroin once when some guy on a bike popped into where I was staying and was offered it. I thought 'why not'. A big mistake. I was not addicted but could have become, if he had visited again. My father cared for me, I slept for the first week I was that ill and had to rest in bed for 2 months. Once my liver fully recovered, in the last 4 weeks of being bed ridden I had to have weekly blood tests and was joyed each week when the pathologist told me the infection was reducing. I couldn't walk far once on my legs, I had to teach my leg muscles to work again. Whilst convalescing I learned and read a lot about the Liver, how it suppose to be the instigator for emotional/mental  disorders. Once I got well, I continued to eat non fatty foods and became a health fanatic, by age 16. 
I remember visiting Sydney Art Gallery and after a few hours, experienced excruciating pain in my leg muscles. My liver is free of the HepB virus. I have it checked every ten years or so and it always comes clear, no sign of ever having it.  Probably due to my young age, 15; for the liver has the ability to regenerate. Years later I relaxed and went back to eating the wrong foods and alcohol. Nowadays I have no desire for it and only drink when out socially with a meal. 
If your GP could refer you to a Social Worker, they can help you with some of the DSP paperwork. I am seeing a Mental Health worker for the next 4 weeks as I am unwell due to my home situation and my daughter cutting me out of her life. I feel I am in a horror movie. It has nothing to do with her moving overseas UK in 2 weeks, end of May. She say's its been building up in her the past 5 years; I have been too attached to her, when it was only her and me in my household, my child became my world, I wanted the best for her worried about her egg/nut allergies, the allergy is worsening as she ages. Of course its "poor me" syndrome I seem to have (I was a good mum saga). I purposely got fat so men would stop asking me out on dates as I was selfish I wanted her all to myself though my ex husband and I shared 50/50 we got on better after our divorce. 
I got side-tracked again, sorry! 
I started writing in my diary at age eight (8) and have never stopped, age 63. If I had not got into drugs so young and dept education wouldn't have been back as had left school twice, age 14&15, I could have made a career in journalism though my IQ is terrible so maybe not. 
Ask your GP for a referral to a GP and if your mental health is declining, contact mental health and they have social workers there who can help you as they have offerred to help me. Best wishes to you. 

[Eagle Ray]

Dear Hello Gail,

Thank you for all your thoughts. I’m really sorry about your situation with your daughter. That would be extremely hard. You have been through a lot. I’m glad you have the support from the Mental Health worker. I think it’s fantastic you’ve kept a diary from age 8 to 63. If you wanted to write your life story you have a great resource. There is so much we forget if we don’t write it down.

The liver disease I have is autoimmune. It’s calling primary biliary cholangitis. It was previously known as primary biliary cirrhosis because the liver used to fail inevitably, but there is now medication that slows that process right down and can stabilise it for many people. The disease destroys the small bile ducts within the liver. I wasn’t responding to the main med for it (ursodeoxycholic acid). Another med was tried that made me extremely ill so had to stop it. I then went to a naturopath who uses advanced microbiome testing. He added in supplements and it turned the disease around, normalising my liver readings. But over recent weeks I’ve worsened in relation to another supplement that both he and the GP recommended for perimenopausal symptoms. I’ve improved since coming off it but can feel I’m still unwell.

I’m sure that chronic life stress and trauma is why I’ve developed the disease. I have horrendous depression at the moment now too, worse than I’ve ever known. Everyday I experience bouts of extreme despair. There’s no one to talk to. I’ve had severe migraines in recent weeks. The first 24 hours I am in unbelievably severe pain with vomiting. I cannot move or do anything to help myself and there’s no one to help me. The next 24 hours I slowly recover. Have been going through that since age 13 when I also developed fibromyalgia.

It’s so hard to keep going. I wake up with distress. I just try to keep living and find hope.

[HelloGail]

Hi again Eagle Ray

This is the first time I've heard of an autoimmune disorder affecting the liver causing disease. I will definetly read it up as I want to fully understand your diagnosis. My neice has an autoimmune disorder probably caused my a tick bite she had on her head when aged 10 it was over 10 hours until she got medical treatment but her doctors have dismissed lupus. I really feel for you and know that feeling of just trying to live and have hope. An ild friend of mine who was a nun, told me something I have never forgotten, she said on your sad days, look outside, look at the trees, skies, plants around you, there is life. My friend, nun, years later passed away with Huntingdons Disease, she never told me of her dx, I found out after she passed. I try to be with nature, I have become interested in birdlife as some visit my balcony. Thank you. 

[Eagle Ray]

Thank you Hello Gail,

The disease I have, primary biliary cholangitis, often gets confused with another with a similar one, primary sclerosing cholangitis. I’m glad I have PBC rather than PSC as it’s got more effective treatment. They are on the rare side so GPs know very little I’ve found. In fact, no GP I’ve seen has known about or understood it.

I feel for your niece. I’ve heard of Lyme disease developing after tick bites. These things are often not well understood medically. I’m sorry about your friend who passed from Huntington’s disease. I really relate to the comments about nature as healing. It’s literally what keeps me going. I felt despairing yesterday morning but then looking out the window I saw a parrot landing in my orange tree. It immediately lifted me. A few weeks ago I felt so terrible. I went to a favourite rock pool by the ocean and the cutest little fish poked its head out from under a rock and looked at me. Again it lifted me and shifted how I felt. Nature was my parent as a child as my parents couldn’t nurture me (damaged by their own trauma). So I self-soothe through nature and co-regulate with it. It keeps me alive.