Lived Experience Forum

[Sunnoi]

Hey everyone,  this is a bit of a long story I'll try my best not to write a novel.

I need advice- 

So I have carpal tunnel syndrome and I'm coming up to my 6th year, I worked consistently since I was 14 years old, always worked hard and have had multiple jobs at times all of the work I have done is pretty hands on.

My history of carpal tunnel is a long and and has destroyed me mentally as well as physically. I was 25 going on 26 when I first starting getting mild symptoms and put it down to just working to much because I needed to so I could provide, my dad is a workaholic and I was taught at a young age to have good work ethic and to work and I guess it's just who I am very much my father's daughter.

actual  the pain and numbing and grip started to progress I went to my gp and seeked advice - said flat out I was too young and I'm wasting his time and there is actual sick people that needed his help. So that didn't sit well with me and because I suffer debilitating anxiety I didn't go back for a while. 

Living in a rural area getting to see doctors wasn't an easy task- the second doctor I saw refused to send me for any scans due to covid and he said like the other doctor wasn't necessary because of my age even though with the doctor's I've seen I've explained that my mother her sister her brother and her mother have all had it and when I explained it to them they knew exactly what was wrong. But being let down once again I just shut off and continued on with life 

2020- my partner got extremely ill very fast with unknown causes so he couldn't do anything for himself and it lasted for 18 months doctor visits surgeries it was horrendous for him.

So I put my own health on the back burner and worked 2 jobs pretty well 7 days a week to make ends meet and having my kids with me 95% of the time I did everything from keeping the house In order work making sure my kids were happy and healthy my kids would go to school and they would be at work with me most of the time, I had help here and there which was a godsend. I look back on it now and don't know how I did it.

So after he was better he got a job and life started getting back on track so I went to another doctor and I didn't have much hope. He told me to come back when I was alot worse and by that time I was in constant pain and my mental health was declining.

I decided to try one more doctor and they finally listened and my scans weren't good at all so my doctor suggested hand therapies and exercises and massage which I did didn't work so I went back and gave had 2 rounds of ultrasound assisted cortisone injections in both hands so after doing all I could he finally referred me to seeing a surgeon which I didn't in November of last year they ordered a nerve conduction study so see the severity and it was very severe so went back to the surgeon and he said ok 3 months and you'll be having surgery I was relieved because its only 3 more months and i can wait. I still needed to work I forced myself to do so because without the extra wage coming in we wouldn't survive so I waited the 3 months and February was surgery month I waited for tome and date and when I didn't hear anything I called the hospital and I was in utter shock and shattered that the hospital not the surgeon knocked me back now my mental state is at the point of not wanting to go on anymore. I am on the highest dose of nerve blockers I can be on and the pain, numbness, loss of strength swelling shaking is more than I can bare anymore. 

The question I have is should I feel guilty for trying to get on a government payment for medical reasons until I have my surgery? Because I feel like a piece of shit for considering it, my doctor strongly advised I stop work because I'll be doing permanent damage to my hands. I have guilt because I don't feel like I'm providing for my kids but I've reached my breaking point. I'm in physical and mental agony.

Thanks for reading 

[tyme]

Hey @Sunnoi ,

Thank you for sharing your story. As you mentioned, you've worked hard all your life. I saw that in my mother too, and she had surgery on both hands for carpal tunnel. She worked hard all her life too AND, she paid taxes. 

That's what taxes are for. If you are eligible and the government approves your government payment, then take it.

If the government doesn't approve it, then also take it.

You won't know unless you try. 

That's the beauty of being in Australia. Residents have access to such services.

[Jynx]

Hey @Sunnoi thanks for sharing. Holy heck, I am so sorry you were treated so poorly by so many doctors!! I know how painful it can be to be trying to get answers and relief, and to be shut down time and again - it's no wonder you've just put up with the pain for so long. I really hope that you can get the surgery soon. 

To answer your question, not even in the slightest!! You do not need to feel guilty AT ALL for having to put work aside for a time so that you can take care of yourself! Even the Dr has recommended you stop work - it'll only exacerbate things at this point, and every single one of us NEEDS to take time away from work to be able to take care of our bodies. You could even think of it like, you've already done your time, working through the pain; you deserve some rest, respite, and time to heal. Especially after surgery too - our bodies need a lot more rest than usual after going through that kind of physical trauma. 

Do you have any mental health supports at the moment? Because even if you can accept my words on a logical level, it sounds like this 'strong work ethic' is a value that has been instilled in you from a young age, and it can be hard to untangle ourselves from the value systems of our parents and make the choice to do things differently. It might be helpful to have someone to help you work through these feelings of guilt and not end up riddled with anxiety or mental pain whilst you're trying to focus on healing.  

Remember, rest is not a bonus, it's not something we need to earn - it is a basic human need. 

[Sunnoi]

Thank you ❤️ I'm sorry about your mum, it's certainly not nice to go through, I'm glad we live in Australia and have access to these services I just feel like I'm not deserving even though I've paid my taxes as well. I guess my anxiety stops me as much as the guilt

[Sunnoi]

Yeah some of the doctor's I've been to over the years haven't been pleasant but there is a good bunch on the mix also.

I'm on a wait list to see a psychiatrist it's an 18 month to 2 year wait and I speak to a psychologist as well, I'm also trying to get into long term therapy. It'd a process for sure. Work was definitely instilled on me at a young age and I love go work but I've also never being able to be a stay at home mum and I miss out on alot which also causes issues on its own with my first born I was only home for a year with my second it was only weeks out of necessity hasn't been an easy road that's for sure.

I've never really taken the time to look after myself in a long time, I've always put my family before myself and that includes extended I'm the glue in my family

[tyme]

Hey @Sunnoi ,

It's true that many people don't tend to make time for themselves when they have worked all their lives and devoted everything to family.

You have given so much to others, and perhaps it's now time to look after yourself? I hear how hard this is, yet we all need it - it just might look different for different people 🙂

[Jynx]

@Sunnoi Wow that's such a long wait! I hope it's sooner rather than later. 

I can imagine that feels like quite a lot of pressure, to be the glue. You're definitely not alone in feeling this way, and I've said to folks many times before - 'You cannot pour from an empty cup'. We always gotta look after ourselves first, else inevitably we burn out and cannot sustain the level of effort any longer. It can help to think of it as, by looking after yourself, taking this time away from work, and accessing financial support that you have every right to access, you will be then better able to provide and care for your family down the track. I can imagine that they would want that for you! 

I'm not sure if you've seen it already, but you could potentially benefit from our Guided Service - free telehealth sessions with a counsellor or peer support worker. You can check your eligibility here. Might be good as an extra form of support to help you navigate all this. 

[Sunnoi]

I'll do my best thank you for reaching out, means alot

[Sunnoi]

Yeah it sure is but I know I'm not the only one going through alot, I'll try my best to get in when I can. And I know they do it's just hard for me to accept I'm pretty stubborn but hearing from people that didn't have to reply or say anything changes my perspective a bit so thank you 😊

I will certainly look into it

[NatureLover]

Hi @Sunnoi , so sorry for what you have suffered and are suffering! Oh my gosh.

You absolutely can't risk permanent damage to your hands - I would be applying for the payment. 

To make sure people see your replies, you can tag them by putting a @ before their name and clicking on their name in the drop-down box 🙂

Good luck with your hands, and the payment 🤞