im struggling quite alot again. I feel like a walking diagnosis atm. constantly at the drs or a place getting tests done, or specialist or hospital clinics. i have so many diagnoses to contend with now plus so many other life challanges that dont include mental or physical health. its getting really difficult for me to cope
hey @scared01, that does sound like it would be very difficult to deal with, if you like we could talk about things in bit more detail. Did you want to go into a bit more detail around the other non health related things you're going through? Or we can talk about how your health is impacting you at the moment if you would prefer?
@scared01 I'm so sorry to hear that you're struggling right now. I know how you feel last year I went through something similar bouncing between specialists/pathology testing places trying to figure out a reason for the symptoms I was experiencing. I understand how difficult it is to sort it all out in your head and keep trying to push through and maintain a positive attitude. Have you been able to speak to anyone close to you? Do you think there are any self-care strategies you could try/would take your mind off what's going on? I know there are so many great forums with self-care strategies.
Its hard to talk about some things cause anonymity but i just feel like i have alot of responsibilities to try and manage along with my own conditions. alot of the time when i do something for myself i feel guilty because i shouldve been doing something else. my illnesses affect me alot. i have to miss out on alot of things that i like to eat/drink, or that i like to do or wouldnt normally like to get done like a massage (cant lay on my stomach anymore). every shopping trip is a battle because of all my intolerances and dietary requirments because of a few conditions. alot of the time other people are frustrated at me because i cant do alot of what i use to or enjoy the things i use to as well.
im really just sick of being sick like sometimes i struggle to even keep water down when i have a flare up of certain conditions
hi @celestialdreamer i havent met you yet so its nice to meet you.
i dont have anyone to talk to. i have to go through everything alone and im also a really private person only saying what i have to say. if i talk to others anyway they just sigh liek they are over hearing about me too so i no longer talk unless its urgent
That is so tough, thank you for being so honest about the realities of how illnesses can affect day-to-day life. I think it's so important to talk about how some things just really suck. That's so disappointing that people get frustrated with you when you are unable to do things, that seems really unfair
We are always here to listen whenever you need to vent @scared01, did you get up to much today?
Thanks yeah it is really tough. i was diagnosed with another ailment yesterday and have some procedures that need doing plus more tough decisions on a different illness on friday so its hard to manage atm.
today i have been doing the bill paying and also looking for gifts for my sisters birthday and helping buy some decorations. its a milestone birthday for her so we are making it as special as possible even with covid restrictions
I just read through your posts. That all sounds so hard. Having to be aware of all your different diet requirements as a result of your illnesses/ dealing with flareups - hell, not even been able to keep water down at times sounds really hard. Then, throw all the logistical stress of setting up appointments with doctors on top of that!
Whilst I can't relate personally to your physical symptoms, my partner has Crohn's disease and experiences very painful flare-ups when she eats the 'wrong thing' - sometimes she does not even know what has caused a flare-up. I see the toll this can take on her, so I really hear what you are saying. I'm really sorry you have to deal with it.
I think it's powerful of you to volunteer as a builder, talking about your own issues online.
What do you do for self-care when your body is feeling like this? What usually works for you?
So sorry to hear you've been diagnosed with something else, that is certainly not what you need right now I'll be thinking of you on Friday, I hope every goes as well as it can
Good on you paying the bills and getting ready for your sisters Birthday! I'm sure she will really appreciate the effort you've gone to so that it's special for her
Aw thanks i was lucky enough to be invited in as a builder about 2 or so years about. its a priviledge really to be able to be one.
Thanks im much like your partner, if i have the wrong thing whatever that might be i often have a flare up for days too. i often dont know what it is either as so many foods and drinks have hidden things in them for example who puts dairy in sausages? honestly i brought a packet and i couldnt have them because of it. i never thought it would be in them.
ive really only had these issues for a few months but only diagnosed about 8 weeks ago so im still adjusting to alot of changes. but theres not much i can do except to take some pain relief, rest and use heat packs to settle the pain down. theres not even much drs or anyone can do except for dietary changes unfortunatly.
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