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Re: Chronic Illness Support Squad

@TawnyOwl  I totally agree. It is a bit hard for someone to imagine not being able to do the daily activities that they are used to doing. It can also be pretty disappointing to not be able to do things that you previously enjoyed doing.
My eye symptoms vary depending on what I have been doing that day, how I've slept, and things like how much light I am exposed to and the weather. Sometimes I can do things and sometimes I can't. Sometimes my family members can't understand why I can read an eye chart sometimes, but can't see at other times.
I have some trouble tolerating activities that require staring or concentrating. Some of the worst triggers are navigating, being in a car (even as a passenger), driving games/simulators, and sometimes even just trying to follow instructions, look for something or listen to what someone is saying. The strange thing is that going on buses and trains aren't as triggering as being in a car, but I usually end up using an app to navigate because sometimes my distance vision gets blurred and I can't see signs. I used to be better with those kinds of triggers.

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Re: Chronic Illness Support Squad

@WheresMySquishy wow that sounds rough. Interesting that you're better in trains than cars... maybe its something to do with the level at which you're travelling? It must be hard trying to explain it to people, especially with the varying triggers and the varying amounts to which the triggers affect you. Although CFS is very different to what you're describing and possibly quite a bit milder, I do understand what you're saying about how sometimes certain things affect you and sometimes not - often when I relapse it'll be from a stressful situation or from physically exerting myself too much, but sometimes it's completely random. Some days I have had nothing on the day before and I'm not stressed but I struggle to do much without having to rest for hours afterwards, but other days I'm able to cook a two course meal and do a block of study without too much trouble. I'm sorry that's happening for you, that sounds super sucky! Is it a lifelong condition or will it get better in time do you know? (: Heart

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Re: Chronic Illness Support Squad

@TawnyOwl  I wonder what it is too! I think it has to do with light, wind, exhaust fumes, navigating, etc. When I am on buses or trains, I tend to sit towards the back and don't get as exposed to as much wind, light and other things as being in a car and I don't have to concentrate on looking out the windows because I have apps that alert me when I reach the right stop.
My sister and I got to play Super Smash Bros Ultimate with her physio today! It was a bit hard for me to see the TV at first, but luckily my vision got better after I blinked a lot, which sometimes helps because my blurred vision is caused by an unstable tear film. According to my cornea specialist, I will always have this kind of eye problem but it might wax and wane. Two things I have tried have helped somewhat with my eyes watering and itching, but unfortunately they haven't helped my other symptoms and he doesn't thin anything will help completely.
CFS sounds like a pain, especially when you can't avoid the triggers or don't know what they are. It sounds like something that would interfere a lot with your daily life and be really frustrating. Smiley Sad

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Re: Chronic Illness Support Squad

Hi all!
Today, my GP's surgery decided that I will be put on a management plan for my chronic illnesses and because I see a lot of different specialists. I didn't even know that this option existed and I still don't know what it does exactly. Does anyone here have one? Here are some articles about this kind of plan online if anyone else is interested in discussing this with their GP.
Also, they might be helping us get a carer's allowance. I think it's a good idea, though the amount of the allowance is so small that it will probably go towards paying for my sister's medications if we get it.
Some of my lab results are a bit abnormal so I have to repeat the tests in a month at a different pathology company and see if they can order some other ones. Nothing is too concerning though. We are also switching one of my medications for a different brand because my current one might be making me put on weight, although it has helped a lot with one of my conditions. Hopefully, it works just as well! Smiley Happy

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Re: Chronic Illness Support Squad

@WheresMySquishy Wait you weren't given one already?

Actually no that doesn't surprise me I haven't got one either Smiley Frustrated

From what I know it's basically you and your doctor make a plan on (unsurprisingly) managing your condition, and probably getting regular appointments to see how that plan's working. I think they can make certain treatments cheaper but I'm not sure.

 

I really hope you get the carers allowance! Even if it only helps a bit, it's still something.

(Hopefully they increase it too)

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Re: Chronic Illness Support Squad

@Tiny_leaf  Nope! This is the first they've mentioned it with us. Apparently, today was the day the GP surgery decided to discuss and see which patients need management plans, so my GP asked if I wanted one. Smiley LOL
I think it's a good idea.

I hope we get a carer's allowance too! I thought that it had to be income-tested but according to my GP, there is one that is not income-tested. Having a family member with a chronic illness can be so expensive, especially when you're paying for rented disability aids and medications. I don't know how other families who don't have as much money as us are able to afford these things. I hope they increase it for everyone.

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Re: Chronic Illness Support Squad

how am I only just seeing this thread now!
great thread @WheresMySquishy

I have chronic illnesses too, though I really wouldn't want anyone to have them its nice to know im not alone.
**NEVER be afraid to ask for help because you're WORTH it!**
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Re: Chronic Illness Support Squad

Hi guys!


I’ve had my endoscopy, and nothing too concerning, but I still have some unanswered issues. 
In the lead up, I was quite nervous about the procedure. But once the day came around, I was fine, which was relieving! 

 

Interesting to hear you got a care plan, let us know how it goes.

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Re: Chronic Illness Support Squad

@WheresMySquishy I know!!

It took my parents a ridiculous amount just to get me diagnosed with autism before I could even get NDIS funding Smiley Frustrated

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Re: Chronic Illness Support Squad

@Dream_State  I'm so glad that your endoscopy went well! I hope they can investigate some of the other issues. I remember with my endoscopy, they took biopsies and tested them. Everything was good but they weren't definite about one of my results because they took a dodgy sample for that particular test.
@Tiny_leaf  That must have been so frustrating! I wish the system was better and patients and their families didn't have to pay from their own pockets so much for basic things.

I am a bit concerned about my thyroid results so I am going to have another test next month at a different pathology place. I have been tested for that before because I had some symptoms of thyroid problems, but now it is coming up as a bit elevated. I might also have an infection so they are going to repeat that test and order some other ones.