Sick and tired of being sick

[Bbydoll]

Hello. I'm battling multiple auto immune diseases along with chronic pain. I'm sick and tired of being sick and tired; physically, mentally, emotionally and financially etc. I've got no partner, kids or family around. And very few real friends that actually bother to check in on me. My shrink retired earlier in the year. I'm on medication but lately my health has once again deteriorated. Including over $2500 worth of urgent dental work with more needed afterwards.

I can't take much more of this. I spoke with a close friend the other day; who I haven't seen for 8 months and although he was kind enough to let me pour my heart out. He couldn't help me. And has other priorities. I feel as though everyone thinks I'm ok.. because I've been through so much that I'll get through this.

I just want it to end. I'm tired of struggling. Every. Single. Day.

I don't want to live like this anymore.

[Bbydoll]

Hi Shelll, no. I wouldn't go on my own. I would hate that. I should have known that would be the outcome as this always happens - people just don't want to hang out with me and I don't know why because no one tells me why. I don't know if they don't like me or if my health issues are off putting or if it's my mental health issues that are off putting.

My brother said he'll do a seafood lunch for me. He initially said which restaurant would I like to go to... but his daughter is only 14 months old and I figured it would be easier if we just did something at his home. He and his wife are also buying their first house in the next few months.. so I'm sure that will take up most of their time.

I saw my GP and am talking again with him tomorrow. He didn't say anything about my exhaustion but it's still a massive problem for me. My abscess on my bottom is bleeding again - so is at risk of getting infected again which would mean more surgery and antibiotics.

I haven't seen the Cafe and honestly I don't really want to talk to anyone right now. .. because most people think I'm complaining when I discuss my medical stuff but it's a part of my life and I can't control it causing me problems. I have missed out and continue to miss out on so much because of my messed up health. My friend that is in the play wants me to go and see it because it is based on a real story and I think that he thinks that I will enjoy it. But I don't really know if I will. I usually support him as much as I can but I am feeling very neglected right now... so it's really hard.

[Guest_1055]

I am sorry you are feeling neglected. That can really emotionally hurt. Wish I could say something that would bring you comfort or something.

So you have a little niece... that's wonderful. Are you able to more involved in her life? Little ones are super cute aren't they. I don't know they often enjoy the simple things in life. And how nice of your brother.

Suppose if you saw the play it would get you out of the house. And maybe take your thoughts off all the medical issues your are living with.

Shelley xx

[Guest_1055]

Hey and hi to you Doll

Just checking in on you is all. I bought you a virtual cherry blossom tree.

I will just leave it here, shall I

[Bbydoll]

Hi Shelll, thanks for the tree and for the replies. I have asked my brother if we can spend some time together but he isn't interested in doing this. He's always been quite selfish and doesn't do anything usually unless he gets something out of it. I thought him getting married, and having a child of his own that he might have grown up a bit but sadly that's not happening.

I found out Tonight that one of my uncles has passed away suddenly. He was put into care because of his dementia - it was so bad that he didn't recognize his own wife in his own home. And he hated; absolutely hated living in the care facility. He had given up eating and drinking a few days ago, but his son and his son's wife thought that they had more time. They having a funeral next Friday week and I'm going to it. Despite me falling out with most of my extended family - I really feel for his wife. She lives all alone in a big house which she can't maintain. It will take me over an hour and 2 trains to get down there and I will have to leave extra early - so that someone can pick me up from the train station and take me to where they're holding the funeral. My brother said he will tell my mum tomorrow that her eldest brother has passed. But I don't think he will go to the funeral. He says he will but he never offered me a lift in their car or anything - so I suspect he will cancel his plans at last moment.

I've put most of my pay towards a ticket to see phantom of the opera in September at the Opera house in Sydney. It was very expensive but I'm about 4 rows from the stage and almost dead center. Something else I can look forward to!!! I'm also in talks with a friend from high school who is currently on holidays. And I'm trying to organize a lunch with her.. using the dine vouchers we have been given. She's usually so busy,,so it's virtually impossible for me to see her due to her shift work.

I'm seeing a surgeon next month to see whether or not I need more surgery on the abscesses - one of them is bleeding and causing pain alongside my chronic pain issues which I face on a daily basis. I know that I talk a lot about them... but they consume so much of my life and have taken away so much of it as well... hence this post that I made and my frustrations and my fragile mental state. Very few people understand what I'm going through because very few people are going through similar things. I feel like such a failure because I haven't achieved what I've set out to do time and time again.

[Guest_1055]

Its hard to know where to start writing to you actually. My own brain seems quite scattered. So sorry if its all over the place.

You are welcome in regards to the tree. I was thinking you talked about liking this tree a while ago. Pretty sure it was this tree, now I am doubting myself.

I am sorry about your Uncle. And his wife. The one that lives alone. That is good you are going to the funeral. You do sound so sweet.

Those absesses do sound rather painful. I am sorry that you experience all that. And of cause you would be so very sick of all this.

That is why its great you are going to the opera house. And are they excellent seats, it sounds like they are? But I don't really know. How you getting there? By train? And yes definitely something to look forward to I agree.

[Bbydoll]

Hi Shelll, yep you got the cherry blossom tree right. That's what I did mention months ago.

I managed to sleep 19 hours straight. As I overdid running errands on Friday and slept until about midday today. And I don't feel any better. I'm supposed to be cleaningup my apartment as I'm having my fire alarm tested on Tuesday and then having a woman from a mental health team come around - she's supposed to be helping me get onto the NDIS. I'm not really sure why she's on a mental health team as she never wants to hear how my mental health is going.

But the idea of me being on the NDIS is so that I can have someone to help with cleaning my apartment and helping with shopping etc. It would be great but I've been knocked back once.. because although I've written here how much my health impacts my ability to get things done.... they don't see diseases and illnesses as disabilities and so won't put me on the NDIS. It's utterly ridiculous because I'm not well enough to study or work but apparently I'm not disabled enough to get the NDIS

I'm going back to bed for a while. I'm cold. Tired and getting a headache

[Guest_1055]

It is pretty cold isn't it. Hope you feel a bit better rested after your nap.

Yeah I don't know much about the NDIS. I know there are a lot of service providers that accept clients that have it though. I use to work for one a while back.

[Bbydoll]

Hi Shelll, I'm sleeping a lot!! With this fatigue. I tried explaining it to other people and I said it's like moving through quicksand. It's so frustrating because I'm completely independent and currently aren't getting much help. Yesterday was a massive day for me. I went to an Uncle's funeral and had to face most of my extended family who I don't speak with after having a falling out with. The few who did actually speak to me said that I looked good despite me obviously unwell. There was some talk of trying to get everyone together again but I doubt that's going to happen as I tried that over 20 years ago. I then headed to the city and caught La Traviata on Sydney harbour it's an opera which Pretty woman and The Moulin Rouge movies are based on. I bought a cheap ticket online before I went to the funeral. I ended up getting home at 2am thanks to waiting for public transport!

I tried reaching out to my close male friend but he didn't respond to my messages that I sent. It happens a lot and I don't know why anymore. I know guys can be like that. But he knows that I don't have many people around me and all of my health issues.. it's just really hard because we are so very close and I love him so much.

[Bbydoll]

So I've found out that I've got carpal tunnel in both my wrists and have to have steroid injections in both wrists in the muscles. I also will be getting a double iron transfusion next week as my iron is low. My inflammation markers are raised, but my sodium levels are down all of this can indicate that my crohns disease (bowel) is flaring and I might be bleeding inside of my bowel. I'm still also bleeding from the fistula on the outside of my bottom and it's sore to sit on.

I'm so tired physically and emotionally and mentally from dealing with all of this on my own.it just doesn't stop... I do everything that my doctors recommend and I still get sick... my body still attacks itself. Over and over and over again.

[Bbydoll]

Because of all the stress and me not coping properly. I have been binge eating including even eating mum's chocolates for mother's day and I don't even like those ones!!!! We aren't seeing her as my brother is getting over a chest infection at the moment and there's restrictions because she's in care. It would take me over an hour to get there because I don't drive or have a car. So I won't be going on my own either.

My GP couldn't access my veins, so I couldn't get my double iron transfusion. So my GP faxed off a letter to my gastro to try and get sorted out at the local hospital as they have a portable scanner to help access veins as wellas specialist nurses - both of who I have dealt with in previous hospital admissions. The gastro doctors secretary rang to let me know that they'd received the letter but haven't heard any back. So I have no idea when that's going to happen. I have an appointment next week with my bowel surgeon to see if he wants to do more surgery to prevent further abscesses from happening and maybe a colonoscopy as well - if he goes ahead with the surgery. But there's probably atleast a months wait as it's the minimum wait time (I know this from previous dealings with him!).