Sick and tired of being sick and tired

[AnotherRandomUser]

I have a chronic illness that is slowly getting worse.

I went from being able to hold a small part time job, to being completely housebound. I'm in constant pain, and I'm severely ill.

Thanks to several uncaring governments, any support I used to get has been cut. I cant get the NDIS, I cant get one-on-one care, I cant even afford regular doctor visits.

I dont have supportive family, and I dont have any offline friends. So I am completely on my own. When I get really sick, when Im having constant seizures, when I cant get food for myself... I suffer. Theres no one to help and I live in constant fear that I might die collapsed on the floor one day alone. And please dont ask me to keep trying to find supports, I have and am, I'm telling you theres none. NDIS wouldnt help despite having 3 specialists saying I needed it, I can only win if I take them to court, Im too ill. And yes I applied several times. Cant afford to do so again anyway, no money left.

So now if Im too weak to do something, I go without, and theres no one I can call. Sometimes Im too sick to even get to a doctor by myself, so I lay in bed alone praying I will recover somehow. I used to have a social worker to help, but the funding was cut.

And worse is because Im so broke and so alone, I feel angry and depressed because I feel that Im never going to be able to live my life. I'm 32 and never been kissed, never had a relationship, havent had offline friends for over 5 years, havent traveled, have done basically nothing in life. I feel worthless.

And I fear the future, like what happens when I eventually cant pay my rent? What if I have to move, how am I gunna do it by myself? What if I end up homeless, will that kill me? Im so afraid. I feel like the whole world has abandoned me and left me to die. I dont want to die, I want to live. I just wish I got the damn chance! I wish someone would help. But our government dont care, and theres no services who will help.

I dont know what to do, my mental and physical health keep getting worse and I just feel horrible fear every day. I just dont want to struggle anymore. Why is it like this? Australia is supposed to be a rich country, but theres nothing for people like me.

[Sophie_M]

Hi AnotherRandomUser,

Thank you for sharing your story here. We’re sorry to hear you’re not getting the support you need. That must be incredibly difficult. No one should have to feel alone through this.

We wanted to reach out and let you know that we're here. If you ever want to talk this through with one of the Beyond Blue counsellors, feel free to give us a call on 1300 22 4636, or reach out through Online Chat here.

We hope you find some comfort in sharing here, and in hearing from the lovely community.

Kind regards,

Sophie M

[Black_Magic_Dragon_Ball_Z]

Hello friend,

I just wanted to say how much your story has touched my heart. I feel very frustrated for you and your situation.

The government certainly has a lot to answer for and has an awful lot of problems with the services it provides for the community.

Life must be overwhelmingly difficult for you at the moment. You sound like you have great difficulty with your day to day living, let alone the more difficult things that you need to do.

I just want you to know that you are not alone, there are others like myself who care deeply about the needs of others and would help out in any way possible if I possibly could. I encourage you to keep reaching out to people on the internet as you may find some people who are in a similar situation as yourself with some advice with what you might be able to do, to get some support. I don't have any answers for you right now but suggest that you ring your local council and let them know about your circumstances. they may be able to get the district nurse to drop in and see you on a regular basis just to check that you are fine. I to live on my own with no family or friends to support me but unlike you I am totally blessed with mobility and a car to get around in, for this I am truly grateful. I am sorry that you can't get the assistance that you need right now but I pray that you will somehow find the support that you so desperately need. I can't imagine how hard it would be for you to stay positive when you have suffered such a dark and lonely period by yourself. My heart goes out to you. Please feel free to drop me a line if you need someone to talk to. I will keep you in my thoughts and prayers. Take care and may God Bless you and provide you with what you need.

[AnotherRandomUser]

Hey Black_Magic_Dragon_Ball_Z

I feel frustrated that the supports I used to have became NDIS-only and I couldn't get them anymore, and then I can't get the NDIS either. I have spoken to Lifeline many times because of not coping and they told me a lot of other disabled people call them for the same reason. It truly feels as if many disabled folk have been abandoned in this country.

But thankyou heaps for your kindness, it does mean a lot.
I will consider talking to the council about it, I contacted the state Health department and they didnt help at all.

Living in isolation is tough, even without a disability. I feel there should be more services to help isolated and lonely people, with or without a disability. I think a lot of things expect you to have someone to help you, and when you don't, it makes it tough to get things done. From moving, to hospital stays, to emergencies, to accommodation. Its a lot getting by on your own. And it can be tough making friends from scratch too.
So wishing you the best too, its not easy

And thanks again for your kind words. Honestly even if you cant change things, its nice to have someone be understanding and who relates somewhat. Theres a lot of stigma towards isolated people and sometimes I feel not only alone but very judged for it too, so having you be kind is such a nice change. Thankyou. May your life be good to you too, and hoping for a better tomorrow!

[Summer Rose]

Hi AnotherRandomUser

I am so very sorry that you are experiencing a chronic physical health issue. I am, unfortunately, in the same boat, so I do understand some of your concerns and fears.

In my case, I use self-talk to remind myself that there is treatment available and to be grateful for any symptom relief, and when my mind wanders to the future (I will gradually become disabled) I tell myself that I will find a way to cross that bridge when I come to it. It is far less scary and stressful to deal with one day at a time, as my “what ifs” (and yours) may never eventuate.

I have sought professional mental health support to help me better manage depression and anxiety and I would encourage you to do the same. I use deep breathing when I feel overwhelmed or highly anxious and that really helps me. I have also worked hard to reframe my illness as an opportunity to improve my health, and now do all I can to help myself.
A new vitamin regime, lifestyle changes to reduce stress, physiotherapy, a new gym membership, lots of research into new drug and treatment trials (to keep hope alive) and I walk daily. I feel more in control of my destiny and like an active participant in my healthcare.

However, what I find hard to comprehend, is how anyone could be expected to manage a situation like you or I face without emotional, practical and financial support. I think you are amazing and a person of great courage to get up every day and do your best in the challenging circumstances you face. 

I am so disappointed that there is no support available to help you. I know you don’t want to be encouraged to keep looking for support, but I hope it’s okay to say that I also think contacting your local council is a good idea.

And I would also like to encourage you to format your post into a letter to your local State MP and ask them to point you in the direction of local support. You just never know what a good MP may know about community organisations and how they could be able to provide assistance. 

I wish there was more I could do to help you. But please know that I offer a good ear and warm heart anytime you want to talk. 

Kind thoughts to you

[Black_Magic_Dragon_Ball_Z]

Hello friend,

Thankyou for your reply and kind words.

You are so right about it being tough when living in isolation, it can make you feel very disconnected from the world and everyone in it...

I get terribly lonely sometimes and it's really nice to have someone to talk to that understands and can relate to the situation.

I have thought about starting a group on Facebook for people like yourself and I. People who would like to be a part of the wider world and community, without feeling like a burden.

I'm not sure if people would be interested though or what I would call it. I'm not sure if there are others out there who would just like somewhere to chat with like-minded people, like on this platform. You are right it is tough to make friends especially if you are a bit of an introvert like myself. I have a hard time introducing myself to new people. If you very rarely leave your home, this also doesn't allow many opportunities for social contact. The internet is a wonderful tool for us to be able to contact others once you know where to find them. I am happy that I found Beyond Blue and am glad to meet you. The rules of this group are very strict and don't encourage further contact outside of here and this I understand, so I can't offer you anything more than encouragement and support... I want to let you know to stay strong and keep 'hope' always at the top of your priority list. Try to keep your chin up and keep fighting the good fight. Bye for now... Bless you 

[Samii1]

Hi Random user,

 I’ve just read your post and I can relate…I suffer from extensive chronic illness as well and I live in isolated outback. I’m so sorry what you are having to go through…trying to get any help is impossible and it shouldn’t be this hard. I also don’t have any close friendships and my family doesn’t understand what I’m going through.

Please feel to reach out to me anytime 💕

[AnotherRandomUser]

Hey Summer Rose.

I do try to take it one day at a time, and usually I manage okay doing that. But lately my health has been quite severe and there have been moments I thought I was going to die. Being on my own through that is terrifying and I struggle to feel safe being ill and alone like this.

I constantly take care of the health conditions I have, though I have an undiganosed stomach condition which scares me a lot. I am often in pain, and I need a endoscopy but cant get one because I do not have someone to care for me after its done and the hospital wont let me do it without a carer, so I am scared I could have something very wrong and they arent able to even diagnose it. I try to tell myself its probably not serious and I am seeing a specialist in 3 months but its so hard to get through the tough nights when the pain is bad and I am really ill.

But I am trying to just focus on what I can do, and trying to stay calm when things are bad. I hope they find out whats wrong so I can at least feel a bit less fearful.
And yeah its so hard to manage life these days, let alone when you are sick.

I dont think theres any other services I wouldnt know about, I had a disability worker and all and even they couldnt find anything. But I am always looking out for new programs that might come up.

But thanks, I wish you the best too. And well even you responding is a help, its nice to have people who care when things feel so tough.

[Summer Rose]

Hi AnotherRandomUser

It really does sound as though you are doing your best to keep a handle on things despite your trying circumstances. Good on you.

Sorry to hear about the situation with your endoscopy. You may have already tried this, but what about asking the hospital to keep you overnight? Or, scheduling early morning and spending the day in a comfy recovery chair? Just thinking out loud.

With regard to services, have you checked with local charities? I’m thinking that the Salvation Army or Anglicare may offer something in the way of driving services or home visits for people who are unwell.
What about Meals on Wheels? At least you wouldn’t have to cook and you’d have a daily visitor.
My last thought is to see if there is an organisation or foundation that represents your illness, such as the Cancer Council. Chances are there are other people experiencing symptoms like you and not qualifying for the NDIS, so they may have some support programs. At least you will likely receive an understanding compassionate response.

Hang in there. Hope today has been a good day.

Kind thoughts to you