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.

[Eagle Ray]

P.S. A few hours after the above rant/meltdown I think I have recovered. I will contact the liver specialist directly asking him to supplement the referral so that the neurologist will actually understand why I am even being referred.

I just get so triggered as I've been through cases of complete failure of communication with medical people multiple times, both in relation to myself and loved ones. In the latter case there were cases of major medical negligence that lead to serious harm and I think I'm still traumatised by some of that. My capacity to trust medical professionals has been so eroded over time.

But I realise I have to be persistent and assertive over and over. It seems to be the only way through to be heard and get the help I need.

[Croix]

Dear ER~

I'm glad you are not so overwhelmed now and I'm sure you are equal to the task, at least the reasons are written down somewhere, if not to your latest referral.

If it means waiting until your usual GP returns that that is one hopeful area, as is a number of other avenues you are thinking of.

Administrative hassles are just that, hassles. Eventually you will see someone wiht  common sense and it will be sorted.

My latest hassle I had to go via my psychiatrist, urologist and the practice manager of my medical center -we got there in the end:)

Croix

[Eagle Ray]

Thank you kindly Croix,

I realise doctors work under pressure. I'm sure being a GP is quite stressful at times. I just get so befuddled as to how you communicate clearly with them and they manage to totally distort what you've said and record it incorrectly in a way that makes it really difficult for you. Similar instances last year led to real problems for me that were very stressful. I think I'm learning to find my voice though. I need to call things out as soon as I identify them and assert what I need.

I was at my local cafe today and the lovely lady who works there asked me how I am, which she often does. She is so caring. I was speaking to her about another matter and she was so reassuring that things are ok. I was able to talk to her last week when I'd gone into my fear/trauma state. She asked me how I was then and instead of giving my usual deflective answer of fine I actually told her what was going on. She was then able to give me helpful advice.

So I am slowly learning to ask for what I need and let people know if I'm actually not ok instead of making out I'm always fine. If what I communicate is not heard, as with the doctor today, I'm realising I just have to get stronger at asserting myself. With my psychologist the other day she was saying I need to find my inner fight instinct, to actually defend myself when I need to and assert myself when I need to. These things were scared out of me as a child as to defend or assert myself was met with volatility. So I'm now finding my inner "Grrrrrr" and learning to defend my boundaries. With my psychologist we talked about how animals do this instinctively. With the two dogs I lived with, if one got in the other's space in a way they didn't like the second dog would bare their teeth and snarl at the other one. They wouldn't actually hurt one another, but they definitely defended their boundaries. I'm sure Sumo defends his boundaries if there is something he doesn't want or like going on. These animals know what they're doing.

[Croix]

Dear ER~

All Sumo has ot do is raise a feline eyebrow and staff quail. I'm in the bad books as it is pelting wiht rain and wind outside and I did not open the door into summer.

I'm afraid some doctors do not live up to expectations and one has to take steps to rectify matters. This is not a pleasant task and can sometimes seem overwhelming, however as you have already discovered the are caring sensible people.

I've found anger allows me to do things I otherwise wouldn't, giving me the energy, motivation and somewhat thicker skin ot be able to tell people when they fall short of quite undemanding expectations. I am not rude and do not appear angry, in face often disguise it in praise but they seem to get the message - or I find a superior who does.

You have a duty to yourself.

Croix

[Eagle Ray]

Dear Croix,

Thank you so much. Yes going into bat for myself is something I’ve never been good at. In fact for much of my life I barely registered my own needs at all.

 I think you are quite right and very wise in terms of, firstly, getting in touch with anger and, secondly, applying it with emotional intelligence, even in the form of praise. It’s like getting in touch with that anger energy and then using it wisely and skilfully.

Thank you again wise walrus.

[Croix]

Dear ER~

You have certainly grasped the idea and about harnessing anger in the most productive manner. It applies in most walks of life bad starting wiht fulsome praise ten expressing regret that on this occasion things have not gone well is an excellent technique.

One can always start nice and become stern and demand, one cannot start demanding and go to nice as easily.

Irrespective of the technique I find the most useful thing anger does for me is allow me to feel entitled to be unhappy with something and entitled to take action. Gets me out of my normal "meek mild-mannered Clark Kent" mode 🙂

Croix

[Eagle Ray]

Thank you Croix,

That is very true, that it is so much better to start nice and then become stern if necessary, but starting demanding can make it difficult to get to nice and calm.

Yes, I think the anger is what enables action. I'm learning that it is important to do something constructive with anger. Any anger I've had throughout most of my life has gotten internalised within. I have not a single doubt that that has been contributing to autoimmune issues I have. The body gets confused and thinks, why are you attacking me? Then actually changes into an autoimmune state, perceiving the danger as within. But when you get in touch with healthy anger and express it in healthy ways, it doesn't get trapped in the body and gets resolved. There's a whole book on that topic by Gabor Mate called When the Body Says No, which applies very directly to me.

I sent an email to my liver specialist's practice to ask if he could contact the neurologist directly. The reception staff who are lovely and helpful there said they'd pass on the message. Then I got a message from the neurologist's office saying he isn't taking on new patients. This was after the receptionist at that practice told me he would look at the referral first before deciding. As the referral from the GP was terrible and gave no explanation as to why I was being referred, and the neurologist hadn't received additional correspondence from the liver specialist yet, I expect this may be why the neurologist decided not to proceed. It's hard not to be angry with the GP for stripping out all the important info the previous GP had put in the previous referral that was on their system. The liver specialist has offered to speak to me when he is available in a couple of weeks, so he is trying to be helpful for which I am so grateful. I can discuss further with him how to proceed regarding neurological issues and if he knows of a good person to refer me to.

What I am learning is to focus on the people who are helpful, compassionate and responsive. When people are not, I need to calmly and assertively stick up for myself. So as soon as I realised what the GP had done stripping the referral of the meaningful info, I needed to respond that day and request it be done differently. Even better, I should have asked him to show me the referral before I left his office and given my feedback then. He is the kind of GP who is always in a hurry and rushes you, but that's where I need to not allow that to happen and calmly and respectfully request further engagement on the matter.

I think many people with complex trauma have difficulty with these everyday things such as speaking up for themselves as it was not safe to when growing up. It is amazing how impactful those early experiences are, well into adulthood. I feel like I am making progress with these things, even though it is very gradual and takes time to consolidate new ways of being.

Thanks again for your insights. Yes, sometimes we have to bust out of our mild-mannered selves into being Superman or Wonderwoman and take care of things!

[Croix]

Dear ER~

I'm sure you are right and that anger boiling away inside is bad for not only the mind but the body too. People often forget how big an influence the mind has on the body

I guess the other thing you are pointing out is that prompt action, no matter how unpalatable, is the best solution, not only in practical terms of getting something done, but in not having so much ongoing anxiety if one lets things go.

This is why I normally phone people on tricky subjects rather than text or email, at least I can normally get the matter resolved one way or another, rather than waiting in limbo.

Good luck with the liver specialist

Croix

[Helena Smith]

Grieve for what you feel you have lost through being ill, let yourself do this occasionally, I feel it helps you to heal. Acceptance of limitations isn't a set and forget thing, but I do feel that it is a two steps forward one step back arrangement. Try for the DSP they can only say no and you can always try again. Applying for these sorts of payments can be hard mentally as you have to get doctor and psychologists etc, reports and it can feel limiting to put down your 'inabilities' but if you can look at it the right way it helps. Think about this as owning your story, let people know that you try and try but that you also struggle. If you get the DSP you can try to work a little if you can and want to, the payment is there to support those that cannot work full time. I hope things work out for you, and that your health settles.

[Eagle Ray]

Dear Croix and Helena,

Thank you for your kind responses.

Croix, yes, I think prompt action makes a difference. I tend to be kind of stunned at times by other’s behaviour and lose my capacity to respond. Again, I’m sure this has something to do with childhood experiences of sudden, disturbing and unpredictable behaviour from others that put me into shock as a child. Responding wasn’t safe, so I can still be scared to in the present. Getting slowly better at it though which helps overcome feelings of powerlessness. I agree that making phone calls in preference to text or email is a good idea in particular situations. You usually get to resolve things more quickly and are not left hanging in uncertainty.

And Helena, thank you for your wise and thoughtful comments. Yes, the focus on inabilities for the DSP can feel negative. It is having to prove how much deficit you have, while at the same time I’m someone who wants to improve and not focus on deficit. I have very good support from my psychologist. However, I don’t currently have a GP I feel confident with who really gets the whole picture of my situation. No GP has understood anything about the liver condition either. The liver specialist seems kind but has limited knowledge about me apart from clinical results because consultations are always brief. I really like what you say about owning my story. If I do get the DSP I’d like to work a little if I can, or do some kind of meaningful voluntary work. At present I’m on a 3 month medical exemption from Centrelink obligations. I’ve improved in the past week and able to do more. I’m not sure if it’s the new medication or being given the breathing space to rest and do some healing without Centrelink pressures. Each time I improve I get idealistic about my future work options/capacities. Then I experience further crashes in my body and become incapacitated. I have to accept my disease is progressive in nature and may not allow me to function at the level I would like. I think that’s where I have to allow myself to grieve, as you say, and then make the most of what I can do. I’m going away for a week soon and even that’s a little scary in terms of the crashes I can have with my body failing me. But I think it will be good for me and I can just lie down and rest somewhere in nature if unwell. Nature is always my safe place that holds me. Travelling on my own I have my own time schedule and don’t have to accommodate to anyone else’s preferences. I expect it to be quite healing and beneficial getting away and doing my own thing.

Many thanks again 🙏