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Re: Chronic Illness Support Squad

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 Smiley Sad

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 Smiley Very Happy

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

Re: Chronic Illness Support Squad

@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.

Re: Chronic Illness Support Squad

Hey @Tiny_leaf, it always amazes me hearing about how you deal with things on a daily basis. I used to love Air Crash Investigations! I used to find it so fascinating.. I am also glad you went all out and got a nice sparkly cane.

Hi @TawnyOwl, I don't think I have seen you around before, so hello! Thanks for your support and sharing your experience. You sound like you have a lot going on but you really know what works for you. What was beneficial about the help you received? Smiley Happy

Re: Chronic Illness Support Squad

@Taylor-RO honestly it felt like a marathon just finding a cane that was short enough for me..

I think I nearly collapsed in the shopping center just from walking across it looking for the thing. 

And of course because I didn't have the cane every step was incredibly painful..

But then I found it!! I had been hoping for a foldable cane but honestly I just fell in love with that one. 

Re: Chronic Illness Support Squad

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 (: 

Re: Chronic Illness Support Squad

@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!

Re: Chronic Illness Support Squad

Hi @TawnyOwl! Welcome to the forums!
It must be really frustrating having to take so much time off and not being able to do anything. Smiley Sad Fatigue is a really hard thing to deal with.
I think it's great that you can put your illness into perspective. Like you, I also found it helpful to think about other people who have it worse than my sister and I.

The lockdown is kind of annoying because I already spent a lot of January and February at home and not being able to do anything because I had two surgeries for my kidney stones. I only started feeling like I was feeling fully recovered in mid March, but by then, the coronavirus restrictions were coming in. Smiley Sad
I think my eye problems have flared up in the last few weeks too. I saw my ophthalmologist recently and I've decided to try an experimental treatment involving a high dose of immunosuppressants. They worked for my dad straight away, but I haven't noticed any improvement so far. I've broken out in a scaly rash on my face, which I've had before. I'm pretty sure it's related to my blepharitis in my case. Fun times!
I've tried to keep up with my volunteering and I've done a lot of free online courses that have been really good. I've also watched a lot of movies I haven't seen yet.

@Tiny_leaf  I can relate to your experience with doctors. I'm not sure if I've told this story before, but when we brought up the idea of getting a home lift for my sister so that she wouldn't have to keep sleeping downstairs and showering in the kitchen when she wasn't in hospital since her FND symptoms mean she can't go up and down stairs, some of the team said that they thought that it would 'reinforce her disability'. Smiley Indifferent We ended up getting it anyway and it's been a godsend.
The lockdown has been hard for us because we have been getting less support from the hospital. The neurophysio assessment went well though. The neurophysio thought that there were some positive signs that she could build on. She has treated people with FND before and has an interest in it. She disagreed with some of the things the hospital had done. We were told not to help her stand and pivot transfer with crutches due to safety issues, but she said that she was happy for us to do that if we were confident doing so. She was also surprised that the hospital stopped doing desensitisation for her pain and said that it should be done because it would enable her to do more in physio. Next time she visits, she will educate us more about FND and start desensitisation.
Air Crash Investigations is a great show!

Re: Chronic Illness Support Squad

@WheresMySquishy this idea of reinforcing disability is the bane if my existence.

It basically just means "if you pretend you're  not disabled you won't be" which.. isn't true at all.


I'm glad the physio went so well!!


And i hope the immunosuppressants help.

Re: Chronic Illness Support Squad

@Tiny_leaf  I totally agree with you! I can understand that for some people, it helps if they have physio that is aimed at restoring function and getting them to move around, but still, it has to be paced otherwise they can get worse. The neurophysio also said that physio and pain management have to go hand in hand.

I'm happy that my sister seemed to like the neurophysio and thought she was nice. Trust is a big issue for her because a lot of medical professionals have said bad things to her like calling her demanding for wanting painkillers before physio or implied that she's faking her symptoms. The neurophysio was really reassuring and empathetic.

I was a bit apprehensive about trying the high dose of immunosuppressants, but it's only going to be temporary and ophthalmologist will reduce the dose. There isn't much research on this kind of treatment and it's off-label. I don't expect it to be a cure but I'm hoping it will reduce some of my symptoms, though I don't have high expectations because most things don't work for me. The ophthalmologist seemed happy that I responded a bit to the procedure I had last year and a strong antihistamine. Any improvement, no matter how minor, is good for us. Smiley Happy

Re: Chronic Illness Support Squad

Hi guys!


@TawnyOwl welcome! I am in high school at the moment too and while I thankfully don’t have chronic fatigue or chronic pain, I do have a life long medical condition and  I miss out on some school and know how frustrating it can be! Is you school good at managing absence and illness? 

To comment on something mentioned before, I follow an organisation in the UK that accepts global members and is the only real support service in the world for my condition as it is quite uncommon. They have been quite good with providing information over the internet to patients about covid19. Luckily they have continued to remain open.


stay safe and positive!