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Accepting disability

Eagle Ray
Valued Contributor
Valued Contributor

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.

119 Replies 119

David35
Community Member

I feel for you. I'm on the DSP as a result of an acquired brain injury many years ago. It's true. There is a sense of loss of your old identity. I was only talking about my situation to a charity worker yesterday and felt down for the remainder of the day. I'm a qualified engineer and never really got a chance to pursue my chosen profession. I've had to look into other sources of joy, namely hobby woodworking, to keep me sane. 

I would encourage you to apply for the DSP. It may help financially. I was reluctant to because of the stigma, but that soon wears off.

I know it's a cloche, but the only thing harder than having the courage to chase a dream, is to give up on one. That's not a defeatist attitude; it's just accepting reality. I used to have a dream of running a woodworking business or a men's shed, but due to my own limitations realise that's not viable. Now I just keep it as a hobby and get more enjoyment out of donating my items or making them for neighbours.

Its hard to know when to push through pain, fear, uncertainty and when to relax and look after yourself. Only you will know.

Eagle Ray
Valued Contributor
Valued Contributor

Thank you kindly David. I’m sorry for what you’ve had to go through. It would have been hard knowing you are a qualified engineer and knowing you are not able to professionally pursue that. But it’s great you have your woodworking and lovely that you get enjoyment from donating what you create and making items for neighbours.

 

I’m university educated also but unlikely it seems to hold a professional job in my field. The jobs I have been looking at, and for that matter the ones I’ve done previously, have been mostly entry level. Work has always been such a struggle and when I tried full time I just had to give it up again because I became too unwell and was on the verge of collapse.

 

My business idea was connected to photography. But I think that probably will be a hobby, but maybe one I can occasionally get paid something for here and there. But doing it at my own pace when I am able. I would so love to be able to manifest a business but starting to realise I may have to do things in a much smaller way.

 

You are right, I will know listening in to myself whether I can push through or need to let go of pushing through. My lifelong pattern as been to persevere no matter what, but I’m getting very strong signals from my body that that is no longer viable.

 

 I hope you feel better since yesterday. I think I too became depressed today after talking to the people at the employment agency because I was forced to confront my limitations. I was struggling to even speak today. But tomorrow is a new day and I think I need to go slow and gently.

 

Thanks again and all the best.

One thing I found after being put on DSP, and this doesn't necessarily apply to you but it might, is that it took the pressure off me requiring to look for engineering jobs. It was like I could back the car out of this dead end in life and find another road in life to pursue. The problem is that when you've invested such a long time at uni, it's a bitter pill to swallow, especially if you were so certain that it would bring enjoyment and financial security later on.

I've tried selling things on-line. The key is to find something that keeps you connected to society. Centrelink give you money, but they don't give you a purpose or an identity. That's something I still struggle with each day. But if I give back in some small way (with my time and skills), then it makes me feel worthwhile. Others may not understand it, because I don't make a profit, but it's about creating a sense of self worth. That's the part that is easily stripped away in our society when you become unemployed, because society tends to "blame" you for it. There is very little compassion for those less fortunate, who simply don't have the opportunities or the good health that many others take for granted. So I would try to start small and see how you go. My motto is, "Nothing ventured, nothing gained".

Eagle Ray
Valued Contributor
Valued Contributor

Thanks David. Yes, I think I’m experiencing a sense of loss about my years of effort into study that I’ve not been able to translate into work that is both meaningfully and financially rewarding. I sometimes think of those mandala sand paintings Tibetan monks spend many hours carefully making, and at the end they tip them back into nature. I try to look at it philosophically that way - that I’ve learned much and been enriched by that, even if I have nothing to outwardly show for it that society recognises as something of value.

 

 I totally agree about keeping connected to society. I know that’s essential for me. I’ve previously worked as a teacher assistant and was thinking of going back to it, but not sure with my health if I can do that except for a few hours at most. But there are volunteer programs to help kids with reading, and that feels like something I could start doing one or two hours a week. I would feel useful and meaningful and connected to my local community.

 

 I agree, society can often lack compassion for those unable to work according to ideas of what a normal life is supposed to look like. Peoples can also judge you when you look ok and able-bodied on the outside, but have no idea of your inner world and the struggles you’ve been through.

 

 And, yes, starting small is a good idea. I have an idealistic mind and spirit that wants to do so much, but having to accept that I can only take small steps at a time. Thanks again for your kind support.

I agree that it can feel very hollow to not be able to reap the rewards from all your efforts. It's something I struggle with, especially if I make the mistake of going on-line and comparing my life to old uni mates who now have thriving careers. But they haven't the struggles I've had to face in life since my accident, so it's not a fair comparison.

One of the problems with mental illness is that because people can't see the problem, they don't believe it exists. Or if they do, they tend to trivialise and label you as a victim. I've had it in my own family.

There are homework clubs run by the Smith Family but they are hit or miss as to whether the one you fall into that is any good. I personally found the kids treat it more as a creche. Sometimes the local council has volunteer programs for tutoring migrants. 

At the end of the day, you can't reason with ignorance. People will only ever see things from their own points of view, however limited that may be, unless they really know you.

mmMekitty
Valued Contributor
Valued Contributor

Hello ER & David

I've enjoyed reading your conversation. Really good for me as someone who has been on DSP for decades, with the last twenty years on DSP - Blind.

While talking to my Psychiatrist, (PDr), he has noticed how I have refererred to losses, losses of ability, which means I notice limits on what I can do. Part of the problem is that we can notice changes, differences between what we once were & how we are now.

These ongoing losses, as my eyesight has continuously deteriorated, are things we may grieve, maybe subtly or maybe something major, like it is for some when they have to give up their driver's license. That one doesn't apply to me.

What does apply is that I had a strong desire to be independent, but seems now, I have to accept being less independent, relying on support workers. NDIS funding too.

I realise I have always depended on support workers on Gov support, since I was a teenager, soon to leave home.

Lately it hasn't been easy, thinking about my housing & if I am able to live as independently as I still want to. I'm feeling more vulnerable & my anxiety has been heightened alongside my own sense that I am not sure I can rely on myself to keep myself on track & safe.

I think, both of you have had to adjust your thinking about what you can expect, anticipate & plan for in your lives. It's like being thrown off one road into another , which is at right angles to the one you were on. That would rattle anyone.

David, I wonder, would you still consider joining a mens' shed? I'm sure your skills with wood working would be welcome. as would your friendship.

& ER, I miss my photography so much - I still try using my iPhone, but it's not the same. I can't spot the birds, or neighhood cats like I used to. I do enjoy its auto focus.

Try to be kind & gentle to yourselves & remember, no one knows just what another has gone through without being in their heads.

Hugzies

mmMekitty

Thanks for your insight. You've been through a lot, more than most should be burdened with in life.

I've belonged to men's sheds in the past. One for several years (2007 - 2010 roughly) and although I enjoyed it, it was very limiting in what I could make and do there. I since went out on my own and made wooden kids' furniture for about 8 years in my own garage which I got more enjoyment out of, particularly because you see the customers' reactions. I took a few years off with back problems. It's only recently I've got back into at home. I tried joining a local one, but the typical male egos get resentful if a newcomer knows more about something than they do, even if you're helping them. Males can be very territorial and it destroyed my confidence in the concept of fellowship. I'm happier just doing my own thing. I've recently made some bar stools for a local Chinese takeaway restaurant and the owner seems very happy. Even though I make a bit of a loss, at least I'm allowed to do things properly and take pride in my work. There's a lot of peer group pressure in mens' sheds; one mistake and they can humiliate you. At home, I make plenty of mistakes. The difference is that I don't care. I learn from it, move on and make a better product next time. I don't let my mistakes out the door to trusting customers, that's my motto.

The uncertainty of the future is a challenge to deal with. The hard part is having people around you who understand your situation and will help you. I have a brother who couldn't care less about my situation. I'm officially in the "too-hard basket"! But that's life. There's some saying I read "Why do you care so much about the opinions of people who care so little about you?"

Eagle Ray
Valued Contributor
Valued Contributor

Hi David and MK,

 

David, I know what you mean about seeing mates go on with successful careers. I’ve seen the same, but I sometimes reflect that my slower pace of life gives me a chance to connect to nature and be aware of small things they are too busy to stop and enjoy. I am forced to stop, but it opens me up to simpler things. It may be that some of your uni mates would love to do what you do with woodworking, to take that time in craftsmanship, but it’s beyond their schedule. So you may be less well off financially but rich in other ways. I’m sorry that the men’s sheds aren’t supportive in the way they’re meant to work in theory, but glad you have found your own way to take pride in your work. I know what you mean about family. My brother is not attuned to what I live through and I know is unlikely to ever be.

 

MK, I can only try to imagine what it must be like losing vision over time. Given my love of photography I’d find it hard. I think I’d return to music which was very important to me in the past. I used to write my own songs. I get the sense from what you’ve written elsewhere that you love music. I hope you can keep connected to those things you find meaningful which can be like anchors when other things feel uncertain. I hope you can navigate a way forward where you retain a sense of independence while getting the help you need.

 

My struggle right now is major loss of breath and stiffening of my lungs. It completely eased a few months ago but has returned. As well as liver fibrosis the disease can cause lung fibrosis. In the past two years I’ve really confronted my mortality. Literally, in order to survive, I have no option but to go slowly and gently now. I actually don’t know if I’m going to outlive this disease or it’s going to get the better of me, but a light in me is trying to stay on and guide me forwards. I try to make the most of the small things I can enjoy.

Thank you for your kind words. I feel like I'm already retired and doing what someone in their 60s usually is. So maybe there's a silver lining, I don't have to wait so long to enjoy certain aspects of life.

Your illness sounds akin to cystic fibrosis. I've only seen glimpses of its awful effects on my nephew so I can't possibly comprehend what you've been through. Let's hope they can come up with some drug or other treatment. Is there anything in the medical pipeline?