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Re: Chronic Illness Support Squad

@Dream_State  Wow, your cousin sounds like he got the VIP treatment with his endoscopy! I'm surprised they allowed all that. Smiley Surprised I didn't get anything like that when I had a gastroscopy either.
When my sister had some of her teeth taken out under a general anaesthetic in October, they let her be in her regular clothes, have a parent there until she was out and a whole bunch of doctors and dentists were working on her, giving updates to my parents and talking to her afterwards. They also let her choose to have the gas. It was like she was a queen.
I think it can be quite overwhelming for a lot of people to have to wear a gown, or be spoken to by people wearing gowns and scrubs. I think it's good that you were given the gas though. I've only had it once because I requested it, but usually they want to give me anaesthetic through a cannula from the get go. Your parents sound so supportive. I wish mine did that, I don't think that they could last that long without food. Smiley LOL

Re: Chronic Illness Support Squad

@WheresMySquishy I get that feeling too. I don't have a chronic illness as bad as any of you here, but its annoying nonetheless. I hate having to explain why I have to sit down, in the Priority seating when the train is full and no seats are left, because of an invisible illness I have.

But I do come from the other jealous people's point of view too, because they probably want attention that they aren't receiving from their families and friends. I honestly hate the attention, but sometimes you just have to get over it.

Haha, @Tiny_leaf chronic illness bingo card, I like the sound of that! Smiley LOL

One of the main problems I have about my illness, is that my teachers are supposed to look at my profile and see what my condition is and what to do if an episode occurs in their presence. But not all teachers do that, which is annoying. I even went and got an Individual Health Plan, just so my teachers can keep me and everyone around me safe. I hate having to talk about it to them, but how else will I get them to see it? Smiley Frustrated Did anyone else have or still have this problem?

Re: Chronic Illness Support Squad

Hey @xXLexi_Lou122Xx, having to explain why you have to sit down in the priority seating area would definitely get tiring. It is disappointing that it is something that you have to defend Smiley Sad I know that would make me feel uncomfortable.

 

That really sucks that teacher's don't look at your profile or health plan. It seems like something that would be super important and helpful for them to know. I can imagine that it would give you a bit of reassurance knowing that they are aware of how to manage the episodes that you experience. Can someone else talk to them about it for you? Or could it be done with an email from your parents or another staff member? 

Re: Chronic Illness Support Squad

@xXLexi_Lou122Xx have you seen those invisible disability cards?

They're not official or anything, but they can explain why you need the seating when you're too tired too.

 

Honestly even pre-printed out cards that you can give your teachers might be helpful, they're more likely to read it if it's something you've physically handed to them.

An email might also work.

Re: Chronic Illness Support Squad

@Hozzles i know how you feel with doctors dismissing you! It took me around 3-4 years to be diagnosed with arthritis due to only being a teenager at the time and being an elite sports player, many physios and doctors just put it down to bad knees. Even now as an early 20 year old i still get doctors laugh at me or thinking im making up my diagnosis which has led me to not trust doctors easily and become very frustrated Smiley Sad but if you know something is wrong then definitely pursue it because no one knows your body like you!

 

@xXLexi_Lou122Xx Chronic injuries and their invisibility are definitely tough to manage on your own but I have found a close and supportive network to help myself a lot. Talking to someone who knows what you're going through and understand your experience can also be very therapeutic so just know that we are here for you Smiley Happy I have also found that it is difficult for people to understand your experience and/or your condition without experiencing it for themselves which may explain your teachers lack of support. Whenever I have not felt understood I try to educate and encourage questions so that I am informing the person on specific aspects of my condition e.g. what I am/am not capable of performing, triggers etc. Perhaps even sending something from a doctor to the teacher directly to explain your condition may increase the seriousness of the issue?

 

Also thanks so much @WheresMySquishy for this thread! It's great to come together with others who struggle like I do Smiley Happy

Re: Chronic Illness Support Squad

@Taylor-RO yeah, but thankfully its gotten better this last week. Hopefully it stays that way! Smiley Indifferent

@Tiny_leaf @Taylor-RO The whole point of me getting that IHP (which is digital), was so that all my teachers are aware of it. But oh well, hopefully something can be done about it. I assume an email could work, but it also depends on if they read it thoroughly or just skim over it and get everything wrong. I'll see what I can do about it though. Smiley Frustrated

I haven't actually seen those cards, I'll have a look for them and see if I can make my own. Smiley Happy

Yeah, the pre-printed cards might work, but I'm still not sure. Only one of my teachers so far, have read it without my telling them about it. That's one of my favourite teachers now lol. Smiley Happy

@Goodvibes1 yeah, it really sucks. Its not really my teachers lack of support, its that they don't just see the red cross on my roll picture, and check what it means. But oh well. Lol, that's the whole purpose of the IHP, but yeah, I'll see what I can do. Smiley Happy

Re: Chronic Illness Support Squad

@xXLexi_Lou122Xx  It must be so frustrating that your teachers don't read about your condition and what to do. Smiley Sad When I was in school, I found that there were some teachers who were supportive of my mental and physical health, and some who weren't, just didn't believe me or refuse to make accommodations for me. I wish teachers were more understanding.
Recently, I used a label maker to print QR codes of my emergency medical info. When someone scans them, they list my conditions and what to do if I have an episode. I decided to put them on a lanyard I wear to work after I had a couple of fainting episodes there.

Re: Chronic Illness Support Squad

@WheresMySquishy That's such a good idea!

At one point where I was going to hospital a lot I started to make a paper version of something similar, fortunately I don't need it now.

Re: Chronic Illness Support Squad

@WheresMySquishy  that is such a great idea!! 

 

I'm loving seeing the support and self-advocacy on this thread! @xXLexi_Lou122Xx  I'm sorry to hear that your teachers haven't all been across your IHP, that's frustrating especially when I know it can take a lot of time and energy to develop it. I know a as a parent myself I've often found that a quick email to a teacher from a parent can be helpful - my daughter also has some chronic health conditions and a health plan , and sometimes an extra heads up is needed. It sounds like you are doing a really fantastic job at advocating for yourself and your needs though! 

 

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Re: Chronic Illness Support Squad

Has anyone here had an iron transfusion?

How did you cope with the side effects if you had any?

This is my first time (I had the transfusion like 5 days ago) so I don't have any experience with this...