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.

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  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? 

@Dream_State  Wow, your cousin sounds like he got the VIP treatment with his endoscopy! I'm surprised they allowed all that. 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.

@WheresMySquishy I'm slowly starting to wear them more, it's amazing how much I can see with them!

I'm glad your grandma is somewhere she can be looked after properly, hopefully there's a bit less pressure on you as well.

@Tiny_leaf  It can be so hard to get used to glasses. I find that it takes me a few days to adjust when I get a new pair.
I agree with you about the cane. I've had family members who were told to take painkillers while their injuries healed, but they refused and then spent ages complaining of the pain. It's not like we didn't have any painkillers either.
My grandma is back in her nursing home now. She seems to be okay after her hospitalisations but chances are, she will end up in hospital again. I think the nursing home is the best place for her right now because she is receiving more care than we are able to provide for her at home.

@WheresMySquishy That sounds very annoying!

One thing that really frustrated me was when I was younger, my cousin (same age) was going to have an endoscopy (camera down throat) and at a family gathering, the grandparents were all making a big deal about him. They all knew I was going to have my twelfth endoscopy in a weeks time but no mention. He was showered with soft toys. It’d been arranged that he didn’t need a gown, had a games iPad until he was out and chose the method of anaesthetic, parents there the whole time. For me, no parent, no iPad, got the gown and the gas, and put the mask on myself cause I was such a regular. I don’t want that attention but like I’m still here. I must say my parents are awesome about it though, they fast with me every time.

People can be frustrating. I hope you find strength when in conversations like that!

x

@WheresMySquishy honestly make a bingo card. They can be fun.

I've recently got glasses. It's weird because it's like I can see EVERYTHING.

And then I get dizzy and have to take them off.

Honestly the thing that baffles me is that it's not like there's anything stopping them, they can afford a cane and know that one would be useful.

Oh where is your grandma now?

Hey @Dream_State, best wishes to you for 2021! 

It can be extremely difficult finding comfortability within your own skin, especially within your teenage years. I know the feeling of watching everyone around you experimenting with their own images and feeling like you need to fit within that category, but truth is that it is an impossible expectation on yourself! Your scars are a massive milestone within your life, and becoming comfortable within them is really important. 
I wonder if there is anything that has been said to you about wearing a one piece, or whether this is your own self reflection? As a young adult myself, I have become so comfortable with the idea of a one piece purely due to comfort, and there are so many gorgeous ones you can get these days that remove the stereotype of one pieces! Would looking around for a nice/fashionable one make you more comfortable? 

Also, I wanted to just link in a body image articles here that I think could really benefit your everyday living. Be BOLD and BEAUTIFUL sweetheart! 

@Dream_State Of course! It's one of those things that can have such a huge impact, not only to you but with everyone so don't feel alone within it 

I can understand that factor, I myself have been seeing the same across my social media platforms and it can be quite pressuring to be conformed into. It's great that some people have the confidence to express themselves in which ever way they please, but it is also just as important for you to express yourself in the way that works with you. I came across a quote the other day that might resonate with you. "This life is mine alone, so I have stopped asking people for directions in places they have never been" - Glennon Doyle. Your scars are your story, and most of your friends/others won't experience them the way you have, so doing what works for you is important 

Try to find something that you feel pretty and confident in! Instagram has some really nice swimwear brands, grab some inspo and hopefully there is one you love 

Hey @TawnyOwl thank you for sharing your experience of CFS, someone in my life has CFS and I know that a lot of people don't appreciate the impact that it has - more health literacy around all chronic illnesses is so necessary 

That is really cool that you have started writing a book series! What a great way to keep your mind off things, can I ask what its about if you're comfortable sharing?

We've also got a writers thread here  if you want to connect with other writers on the forum 

Hi all!
I found this helpful decision aid the other day. I think it is mostly aimed towards people making health decisions but I think it could apply to other things too. I hope it will help someone on here, especially because having a chronic illness can sometimes involve weighing up different options and deciding on the next steps.

@TawnyOwl that's a hard one...

One option is using spoon theory, which you can find on Google.

Another one is just telling them your diagnosis, explaining it to them and if they still have a problem then so be it 

Thank you! I like your name too @Tiny_leaf ! I read your post about FND, that must be really hard, especially at the moment with, as you say, lots of necessary services going into lockdown. If you don't mind my asking, how do you manage work/uni/school (not sure what age bracket you are (: ) with FND?

100% here for you, it sounds rough x

For me the whole covid thing doesn't super affect me cos I have to spend a lot of time indoors on the sofa anyway, so it's like I've been training for this for years haha. Lately I've just been facetiming friends, trying to complete work, reading Bram Stoker's Dracula (it's so good!), watching netflix and doing a lot of sleeping hehe.

@TawnyOwl honestly I don't..

I've got a fairly big list of barely treated conditions which makes functioning almost impossible...

With fatigue and brain fog which I get as part of my depression I try to make things as simple to follow as possible and break things down a lot of that helps?

My FND is mostly pain, so I just use a lot of heat packs and take pain killers if I need.

And use a cane. Mine is blue and sparkly. 

I spent about a year almost entirely at home, but then my brain decided that it was going to break if I didn't do something...

And yes I'm pretty sure you'll get a gold for this 

Oh gosh yes that's completely understandable! That sounds so frustrating! Chronic fatigue sucks but FND sounds like a whole new level of crappy. And depression is awful, I'm sorry you're going through that 😞

Some stuff went down last year and I wasn't doing so good. I've got some help and am doing better than I was, but it's caused an ME relapse that's not super fun. I'm sorry you're dealing with that too, sounds like you've got a lot on your plate.

Yeah that tends to be along the lines of what my plans are, on days when just standing up is exhausting I try to just do what is absolutely necessary - everything else can wait until a better day. Like today I sat on the beach which was exhausting (cos sitting be like that ya know) so for now I'm lying down and I do not anticipate any great movement from here on in. But that's okay! Time to peruse netflix. Any suggestions?

Your sparkly cane sounds pretty! I want one 😄

Hehe thanks I'm glad my training is paying off! 😛 

@TawnyOwl totally get what you mean about sitting. 

I'm not sure if that's FND though or if it's because my hypermobile body struggles with holding itself up. 

My FND does that when my mental health goes downhill too..

Because there's nothing to help with depression like being unable to walk apparently.

Ha, I think the opposite, chronic fatigue sounds terrible..

Beaches are nice, but I can only really go comfortably on ones that are really rocky or have paths.

On soft sand my cane sinks and my knees bend in weird directions.

I don't have Netflix, so I'm just watching  air crash investigations on 7plus.

And it is!

My doctor said I shouldn't get one because "people would see you as disabled". I said so what and found the most sparkly one I could. 

Honestly it was worth just seeing his fave when I walked in with it.

Hi @Tiny_leaf, that sucks about the sitting and mental health/chronic illness relation stuff, sorry you're going through that. It is nice to know someone else gets it so completely though (:

Ooh yeah for sure, sand must be so hard to walk on with a cane. I don't know many pebble beaches near me, which beaches do you like to go to?

Air crash investigations sounds cool, I'll have to check it out (:

Yeah for sure, who cares what people think, and what would it matter if you were disabled anyway!? Your cane sounds mega groovy.

Thanks @Taylor-RO, hello to you too! I think it was just good to talk about stuff and I had some prescription help too which has been really beneficial to me (: 

@TawnyOwl I can't mention any close to me for privacy reasons, but when I went on holidays a while ago I went to Cable Beach. There were lots of flat rocks and lots of interesting animals in the tide pools. Including some sea slugs.

And I went to a board walk over some mangroves and saw some red clawed fiddler crabs.

It is, and it means that some people skip the "what happened to you" and go straight into "wow it's shiny!"

I'm glad your appointment was helpful!