I cannot say much, but I am sorry you are experiencing that. It does sound so very painful. Wish I could take away all the pain for you, so you would not feel it.

Hope you feel some what better soon, or as well as you can be.

Thanks Shelll, I'm home resting and recuperating now. I ordered some hungry jacks for dinner and managed to knock the drink all over my kitchen floor. .. so much for making life easier for myself. I've spent half this pay on getting groceries delivered and with nothing exciting except for some extra lifelong milk (which I normally use); and some extra incontinence pads used after surgery. .. it doesn't get very far. I've got apples and some bananas and a bit of frozen fruit. It's no wonder I'm fat; whenI can't afford better food to eat!! The food pantries here, you need a car to access it - of course I don't have that. It's just pathetic. I'm tired and sore. And just over everything!!

Yeah life can seem like that. Just plain over everything. Had enough sort of feeling. It is challenging.

Hey have you got a blender? You could make some kind of smoothie with those bananas, frozen fruit and milk. And even add some green spinach in it, if you had some.

Sorry about the spill of drink on your kitchen floor. Will you have issues mopping it up? Good thing about that is if it was a refined sugar kind of drink, well your body would do better without it anyway. If you don't mind me saying so. Hope you are not offended, but it is logically true.

I really do wish I could help you somehow.

If you are able to eat canned beans and lentils and you like them. They can be pretty cheap and fill you up as well.

Maybe you are watching a movie, that is what I am doing.

Hi Shelll, the drink was mopped up with an old towel. I have crohns disease - it affects the bowel, so I can't really eat spinach or lentils. Or anything too fibrous. Sometimes all I can eat is carb type foods due to nausea that's a daily problem. I'm still very sore and sleeping a lot. I'm not feeling motivated to do much at the moment. I'm finding it hard to eat anything but forcing myself because I need to heal. Apples are great.. but not filling enough. So I've had a frozen meal but unfortunately it was high in fat so I won't be buying it again. I bought some weight watchers frozen meals and some frozen veggies to eat when I eventually get back into cooking. I love asian meals, so I'm thinking when I do get back into cooking; I'll be doing some stir fries and soups. My birthday is in just over 3 months time.. but what I want is to go on a boat on Sydney harbour but I don't think it will happen. My closest friend is a guy, whose wife doesn't like us spending time together. And I have one female friend who I'm close to but she works ridiculous shift hours and rarely has any free time... and I know that she won't take a night off work for me. My brother doesn't want to spend time with me. I recently asked if I could spend a weekend with him and his family and he said that he didn't have time for that... but I overhead him making plans with his friends to do things. He said we could organize to have lunch and I haven't heard anything back from him and it's been about 5 weeks since we spoke.

I've been sleeping during the day for 12 hours straight and finding that I'm up in the afternoon - watch tv and eat dinner. Maybe watch the 830pm movie although I've managed to completely black out in front of it. No medication changes, no real changes in my mood - just constant fatigue with my auto immune issues. Nothing gets done. I've even slept through text messages notifications on my phone with it beside my bedside. Nothing really wakes me in my sleep.. it's really frustrating. I've had ongoing issues with abscesses on my bottom causing pain into the muscles when I'm bending and sitting -as well as bleeding and having to constantly wear a pad to catch it all. Any wonder that I'm exhausted. My closest friend called me a hermit because in his words I don't go anywhere or talk to anyone but it's not like I haven't tried!!! On top of my health problems. I've grown up having to look after myself with verbal abuse from both parents. And physical abuse from my father - who was almost locked up because of it. Then having my friends leave me during high school preferring to be with their boyfriends than spend time with a non drinking; unwell person. I tried getting my extended family together around this time too; and now they want nothing to do with me including my brother now who'd rather organise things with his mates than spendtime with me!!! Romantic relationships have been something else that doesn't happen when you're constantly sick .. I haven't been able to work or even study at the local campus at university which would have ideally had me meeting people. I've even tried online dating websites to no avail. I can't even get a guy to meet me up for a coffee.. most only want to just hookup and I want more than to be just used. I've already dealt with that kind of situation in my 20s.

Hi doll

I don't have many words to say. But wanted you to know that I am reading what you are saying. And hoping that by you knowing that you may not feel so alone there.

Shelley

Spent another 4 days in hospital because the second abscess needed surgery and IV antibiotics. All on my own. As per usual. No visitors. Couldn't even log online because of no reception. So could only text a few people. It looks like I'll need further surgery to try and prevent these abscesses - although the preventative surgery has already been done once and I had only 2 years before they came back.

I also got notification that I'm still on the waiting list to have surgery on my ovaries for cysts. And it's on a big Sydney hospital and was supposed to happen last year. But with Covid it was postponed.

No one understands how isolating this is. I had to walk to and from the hospital from home - because I don't drive. I have no one around me and I didn't even have enough money for a taxi! To make matters worse it was raining when I left to go to the hospital - but as there was puss coming out of the abscess I had no choice, I had to go straight away with all of the medications and my physical illnesses.

It's all tooo much. I'm so tired of struggling

Hello Doll, not sure how you go at walking or how far you walked. But physically walking is great for most people. And you were outside breathing in fresh air. All good.

Yummy roast pumpkin and potatoes.

Hello Doll, think your guess is correct about your body processing all the surgeries, the antibiotics and the abscesess, plus all the other issues. No wonder you feel tired. It sounds exhausting actually. It takes so much of your energy to heal properly and such.

I know you have never asked for advice and perhaps you are just venting and wanting to feel a connection to someone else. But if I was in your situation I would be getting my nutrients from juices. Lots of freshly extracted vegetable juices. There is no fibre in them, so maybe your body could tolerate them. All the rawness of the vegetables would help put back all the good bacteria into your gut that the antibiotics would have wiped out. And if you include turmeric, ginger in your juice it would most likely help with the inflammation in your body, like the inflamed tonsils. Honestly Doll, if you could possibly do juicing I would really consider it.

I am about to get back onto juicing soon. Reason being I physically feel like crap. As I too have issues with eating junk. It has been chocolate Easter bunnies at the moment. I know what it feels like to feel nourished, relatively healthy and fit. I just want to get back to that. As my quality of life has dimished.

Anyways...

Must be your birthday soon is it? And the cruise, are you going on that still? That sounded good. Even though you didn't say much about it, I am imagining being in the beautiful and healing sunshine. Hearing the waves in the ocean.

And walking 1 kilometre is better then 0 kilometres too.

Hi Shelll, unfortunately I won't be seeing my GP until next week because of the floods. I've got some swollen lymph nodes today and passed out last night whilst watching some tv. I don't think that my gut could handle juices.. and I don't have a juicer anyways. It's just that I'm eating a large amount of food at the moment.

I haven't heard back from my friend about the cruise.. I have a feeling he won't be able to go - as the last few times I've tried to get him together for something he's either said no immediately or cancelled on me closer to the date. I don't have anything to wear anyways because of the weight gain - I'm almost a size 24-26. I've never been this big.. I bought a size 24 dress and it doesn't fit.. I'm so unmotivated to do much because I'm so exhausted all the time at the moment and I know it's the fatigue from illnesses and fighting off the infections. Occasionally it will be because of anemia but mines not that bad atthe moment.

Hi Doll,

I am sorry your friend is unable to go with you on the cruise. And maybe the other one as well. It would have been nice to go with someone. Do you think you will go anyway? Might be kinda fun still.

How did you go at the GP, and are you feeling a bit better at all? Like with the swelling

Hey have you come across the Beyond Blue cafe on here. Just thought I would mention it just in case you feel like mixing with some other people on here. I know it is not the same as real life... but maybe you would like it.

~~~~~~~~~~~~~~~~~~~~~~~

Happy Easter to you Doll, here is a virtual easter egg for you.

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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.

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

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

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.

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.

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

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.

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.

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.

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!).