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Re: Chronic Illness Support Squad

At the moment I'm incredibly dizzy and playing a game of "am I hungry or is this something I should see a doctor about".

It's almost as fun as "Is this FND or is my knee put of place again" and "why does my elbow hurt"

 

Anyway.. does anyone have experience with conditions with overlapping and/ or vague symptoms?

Or a body which isn't great at offering reliable information?

 

I'm struggling to work out what is what...

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Re: Chronic Illness Support Squad

I've got my own chronic illness...

 

This thread really does has me thinking about sharing that story. Interestingly, it was 2 people that saved my life. Three doctors... and as surprising as it sounds, it was my chemist! I'm alive, coping and kicking ass! Last part means I'm well ^-^

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Re: Chronic Illness Support Squad

I wish I had the answer for you @Tiny_leaf. What do you usually do if you experience a symptom that is unknown or unfamiliar? I can understand how overlapping conditions would make it so challenging to figure out what you are actually experiencing. If it is bothering you, it may be worth calling health line direct. You could at least mention your symptoms alongside your other daily habits to see if they have any suggestions or comments Smiley Happy

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Re: Chronic Illness Support Squad

@Taylor-RO turns out it was a mix of hungry and tired.

 

I can't use the phone.

Anyway their site isn't great for people who regularly get issues.

 

Like one question is like "is the person confused, disoriented or hallucinating?" And if you say yes the questionnaire is always like "ring triple zero immediately"

Which I'm sure is great advice unless that's a part of your everyday mental illness.

 

Or like "Is there severe pain in your limbs"

There's always 70% chance the answer is yes for me.

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Re: Chronic Illness Support Squad

Hey @Tiny_leaf ,

 

Oh goodness that site does not sound helpful at all.  I wonder if you called the Healthline and spoke with the registered nurse whether it would be more helpful?

 

I don't have a condition like FND and it's difficult for me to understand what you must've have experiencing but it's amazing how being hungry and tired can affect us.  That's a great insight to have Heart

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Re: Chronic Illness Support Squad

@Khajiit   I'm so glad that you managed to find some answers and that you're still here today! Smiley Happy

@Tiny_leaf   FND symptoms can be so confusing... They can be really hard to spot. Sometimes, they can resemble other conditions (we thought my sister had MS at first) and they're often different for each person. Not knowing what is causing them can be really scary. Smiley Sad
My sister has been starting to get blurred and distorted vision. I was trying to work out whether it's like what I have or whether it's related to her FND. I think it's FND related because it sounds a bit different to my problem but we will raise the issue with her team when we are able to have an online meeting with them.
I've had a lot of experience with overlapping and vague symptoms over the years. It's kind of frustrating if you have other conditions in the same part of your body. I get pain and other symptoms in my eyes and my ophthalmologists aren't sure whether they are from the scar in my right eye or my blepharitis, or both. They can only guess that the scar is causing problems if the left eye responds to treatment of the blepharitis but not the right eye. Unfortunately, each treatment takes months to find out whether it has helped and most things don't work at all.

Re: Chronic Illness Support Squad

Hi, this is such a great idea! I've had chronic fatigue syndrome (myalgic encephalomyelitis) for two years now and I've been looking for a chat like this to connect with other people going through a similar experience. I'm in high school and it's a bit tricky as I have to have a lot of time off as I get sick more frequently than healthy people, and even when I'm not sick my fatigue is sometimes so bad I have to spend a week or so doing nothing, just lying on the sofa. However, I am quite lucky as I only have moderate CFS - people with severe chronic fatigue often don't even have the energy to do simple tasks like cleaning their teeth without having to rest afterwards. How is everyone going with the covid lockdowns? What has everyone been up to? Can't wait to get to know the rest of the Chronic Illness support Squad!

Tawny xx 

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Re: Chronic Illness Support Squad

Hi @TawnyOwl! (I like your username by the way)

 

Unfortunately many  of the services I need are closed indefinitely in the lockdown, so I've mostly been napping.

 

How about you?

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Re: Chronic Illness Support Squad

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.

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Re: Chronic Illness Support Squad

@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 Smiley Tongue