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Chronic Illness Support Squad

Hi everyone,

I have been thinking about making this thread for a while and I think that now is a really great time to make it due to these uncertain times, especially with a lot of medical appointments being cancelled and people being unable to receive the care that they need. A lot of people with chronic illness may also understandably be anxious about catching the virus.
I thought that we could benefit from a space on the forums to give and receive peer support for chronic illnesses and their symptoms. If you don't have a chronic illness but experience symptoms, or if you care for someone who has a chronic illness, it's okay for you to chime in too. 🙂

Here are some links that may assist people with chronic illness at this time:
Support Services
Websites
humankind-relationships.com.au 
The Mighty
Helplines
Pain Link Helpline 
Medicines Line  - They can refer you to support organisations for your condition, for example.

Useful Resources
First Aid Apps
Emergency+ 
St John Ambulance First Aid 
Red Cross First Aid 
ICE - In Case of Emergency 
Apps for Chronic Illness
Flaredown 
MyTherapy - This app can remind you about appointments, let you store the contact information for your doctors, log your symptoms, results and mood and remind you to take your medications.
My Calendar  - I know this is technically a period tracking app but I started using it to track my recovery after an operation many years ago and I've since used it for a lot of other things, like medication reminders, tracking the intensity of many different symptoms, water intake, mood and temperature.
ReachOut Tools and Apps 
Tools
Question Builder
A printable pain diary
Free relaxation recordings
Free guided meditations
Resources about how to combat health anxiety
Resources about how to tolerate distress (e.g., pain)

ReachOut Threads and Articles
Let's Chat: Coronavirus 
Dealing with Medical Professionals
Weekly Wellbeing: Self-Hacking 
Weekly Wellbeing - Self-care At Home 
1000001 Coping Strategies and Distractions 
Weekly Wellbeing - Favourite Podcasts  - Podcasts are really helpful for me when I'm experiencing symptoms!
Relaxing Browser Games  - These can be good if you're stuck at home or to pass time while waiting for appointments.
Living with a Chronic Illness 
Dealing with Bad World News 

Non-ReachOut Articles
Tips for Coping With Coronavirus Fear While Chronically Ill 

Feel free to add your own resources and share coping strategies! 🙂

WheresMySquishy
WheresMySquishyPosted 20-03-2020 04:55 PM
 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 10-04-2020 07:28 PM

@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.

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 10-04-2020 07:47 PM

@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. 🙂

 
 
 
 
 
Dream_State
Dream_StatePosted 10-04-2020 10:18 PM

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!

 
 
 
 
 
Dream_State
Dream_StatePosted 22-05-2020 11:55 PM

Hello again! 

I was wondering if anyone had any tips or advice for me. I’m having an endoscopy in a couple of days, I am not sure exactly what to bring with me as my last one was quite a while ago.

 

Also, any tips for calming nerves, I’ve been a bit more anxious in the lead up about it than I thought I would be, I’m not exactly sure why, I’ve had a couple of endoscopys before.

 

thanks 🙂

 

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 23-05-2020 02:09 AM

Hi @Dream_State! I had one a few years ago and I was pretty nervous too. They let my mum stay with me until I went to the area where I had the anaesthetic because I was so anxious. The anaesthesiologist said that he could give me medicine to make me feel more relaxed, but I don't know if he actually gave it to me. They also did an ECG on me because I was so nervous that my heart was being too fast.
Maybe you could ask if you could have a support person come into the day surgery unit with you. I had another surgery recently and they also let me read magazines in the anaesthetic bay and call my mum from there when the surgeon was running late. I think this helped with my nerves. My sister also gets anxious before operations and one time, the anaesthesiologist let her watch Ninjago on his phone and sing the theme song while she was receiving the anaesthetic. I think the staff can do a lot of things to help if you tell them that you're nervous.

In terms of what to bring, I would bring socks or slippers just in case. My hospital changed their policy between surgeries I had over the years. Originally, they gave me some things that looked like a shower cap but for my feet, but then for this year's surgeries, they told me that they don't have them any more and that I could wear my own socks or slippers. You may also need to bring any relevant scans. If they were done at the same hospital, the surgeon may be able to access them but I think I ended up bringing them for this year's surgeries just in case. I don't think you would need to bring anything else but I'm not sure. You could ask the hospital when they call to tell you the time you have to come in and when to fast (although once the surgeon told me this information in the pre-op appointment).

Good luck! I hope it all goes well. Heart

 
 
 
 
 
Dream_State
Dream_StatePosted 23-05-2020 09:55 AM

Thank you @WheresMySquishy !!! I believe I have to have a parent with me because I’m still considered a minor. Although a lot of things have changed because of COVID19. 

This might sound strange but I think I’m most nervous in the lead up to it. I spent so much of my younger years in the same hospital so in a way being there is actually calming. Thank you for your suggestions, I’ll definitely take that into account. I think children’s hospitals in general are reasonably positive places with kind staff so hopefully on the day I’ll be fine.

thanks again! 😊

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 23-05-2020 08:07 PM

@Dream_State  I hope the staff treat you well and that everything turns out okay! I've personally had both good and bad experiences with children's hospitals, but the great thing about them is that they tend to provide a lot of entertainment and fun and I've found that they ask how you're feeling more often than other hospitals. The one my sister goes to has a traffic light system for assessing mood and they ask if there is anything they can do to make her feel better if she is in the red zone.
Maybe some of the staff will remember you too! I had some funny run-ins when I was in hospital recently. 🙂

 
 
 
 
 
TawnyOwl
TawnyOwlPosted 01-06-2020 10:16 PM

Hi everyone! How do you guys explain your chronic illnesses to your friends? A lot of the people I know don't know anything about Chronic Fatigue so sometimes they think I'm just making stuff up 😞 But I'm not complaining, I know CFS isn't as bad as a lot of illnesses. Love to everyone during this tough time, especially my fellow Chronic Illness buddies ❤️

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 02-06-2020 08:31 PM

Hi @TawnyOwl! I think that explaining an illness to people can be really tough. I am still learning how to explain my health problems to other people myself, which isn't easy because there is a lot I still don't understand or know about them. What a lot of people don't know is that there is a lot of heterogeneity or difference in terms of how people experience illness and between different kinds of chronic illness. Some people have only a mild form of the illness, while other people have more severe symptoms. Some people have symptoms every day, while some people experience 'events' every so often with no symptoms in between. For me, spoon theory fits in with my eye problems really well because they can be made worse by doing everyday activities and as the day goes on, but it's hard to apply it to my kidney stone problems because they only cause problems for me when they drop into my ureter. People's symptoms and triggers can also be variable, so it can be hard for some people to understand them. With my sister, she can do some things with our mum but not when other people are watching. Her physio told us yesterday that sometimes people cannot walk in her clinic but they can walk around in the carpark. I think these points are really helpful to make when explaining chronic illness to people.
My parents still have trouble understanding my conditions despite being in the medical field. My specialists have tried to explain them to them, but they still don't fully understand them. Sometimes, the specialists use metaphors to explain things to them and one of them used to give us factsheets (your specialist may have some if you ask for them), point things out on models and show us photos they took during surgery. With some of my extended family, I've found that showing them resources helps, especially if they prefer written or more academic sources of information. I've also found some diagrams I've seen online to be helpful in understanding my conditions and explaining them to people. What kind of information people understand tends to depend on their personality and I find that the more I read about my conditions and reflect on my triggers, the easier it is to explain them to people. I think it also becomes easier to explain to people if you've had the condition for a long time and have discovered what helps and what triggers it. It is a very much an ongoing learning experience and there can be a lot of trial and error involved.
We also have an article with some tips about how to explain a chronic illness to people here.

 
 
 
 
 
TawnyOwl
TawnyOwlPosted 03-06-2020 01:34 PM

Thanks @WheresMySquishy , I really appreciate all these great ideas! And @Tiny_leaf I have heard of the spoon metaphor before but I wasn't too sure what it was until I looked it up the other day. That's a really cool way of explaining it to my friends and family, so thanks for telling me about it! Chronic illnesses are quite tricky, bc even with research and stuff often it's still hard for your friends and family to understand what it's like and why you can't do xyz anymore. Does anyone else have that? 

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 03-06-2020 06:31 PM

@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.

 
 
 
 
 
TawnyOwl
TawnyOwlPosted 03-06-2020 07:01 PM

@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

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 04-06-2020 09:14 PM

@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. 😞

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 12-06-2020 07:33 PM

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! 🙂

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 12-06-2020 07:44 PM

@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)

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 12-06-2020 07:51 PM

@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.

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 12-06-2020 09:14 PM

@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

 
 
 
 
 
Dream_State
Dream_StatePosted 12-06-2020 09:11 PM

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.

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 13-06-2020 08:13 PM

@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.

 
 
 
 
 
TawnyOwl
TawnyOwlPosted 17-06-2020 07:25 PM

Hi all, just feeling a bit bummed cos I might have to quit high school on account of my chronic illness cos I've fallen so far behind and just because I can't really do anything. I'm kind of stressed and upset bc (needless to say) this isn't exactly how I thought things would go haha. There are other pathways I can take, but none of them are exactly sounding good. How are the rest of you managing school/university with your illnesses? Anyone else had to pull out?

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 17-06-2020 10:56 PM

@TawnyOwl  I hear you. Juggling a chronic illness with school can be so hard. 😞 I would feel stressed out too if I were in your shoes. In my experience, I think it really depends on the type of illness, the frequency of symptoms and how often you see professionals or have treatment.
My sister could not manage with a full-time study load due to her FND, so she is doing her last two years of high school part time. There is something called 'Pathways' that she is doing via distance education. It will mean that she will take three years to finish rather than two years but it's helped her a lot. She also had to drop an advanced subject because there was too much work compared to the standard subject. But she can now keep up with her schoolwork.
I remember when I was in high school, I had a condition that tended to flare up just before my exams. It flared up again in my final year of high school and I had a lot of other related symptoms, but the problems weren't ones that would show up on the scans we did. I remember having to go home early so I could see the specialist and I would have to have scans after school. The specialist gave me a choice about what to do. First, I tried a medication trial but it made my symptoms worse and it was so hard to manage them at school. I think I left the school formal early as a result. Then I decided to try surgery, which I scheduled soon after I received my results. I remember the specialist saying, 'Good, then she'll be knocked out for the results'! Smiley LOL He also said that I would be able to go back to school the next day as the recovery time was really quick, if I chose to have it during school time. Luckily, I never had the original condition again after the surgery, although treating it had some risks so he just decided to leave it alone and just treat the other problems.
But my surgeries this year were on a whole other level. I felt really lucky that I wasn't at school or uni because I was almost totally housebound between the procedures. I would not have been able to manage at school because they gave me a ureteral stent in the first surgery and it had a lot of side effects. It was sore to walk around and it made it hard for me to tell when I had to go the bathroom. It was hard being in crowded places because getting knocked in the stomach was painful. The surgeries also made me feel really faint and tired and I had no appetite. And to think these side effects were mild compared to what some patients go through with stents! I feel like I was able to tolerate them more because I was at home. I think I had the stent for about a month and by the end, I was so ready for it to be removed. I've heard that some other patients have had to wait many more months for their stents to be removed and I have no idea how they are able to manage with work or school.
Appointments still take up a lot of my time though. Since May, I've been having one appointment a week until mid July to try to diagnose and manage my various conditions.
I really hope that things get better for you. Heart Has your school been supportive of you while all this has been going on?

 
 
 
 
 
TawnyOwl
TawnyOwlPosted 20-08-2020 01:54 PM

Hi @WheresMySquishy, sorry it's taken me so long to reply! I haven't been on here for a while... it's good to be back! 😄
Wow it sounds like your last few years of school were really hectic! Sorry things were so difficult for you xx 
That surgery sounds so nasty. Sorry you had to go through that. How are you doing these days? 
How's your sister managing at the moment? She still at school? FND sounds so rough, that's really admirable that she's found a way to juggle school with it, go her!

I'm doing school part time now. Most of the staff are supportive, though some are pretty hellbent on believing I'm making CFS up haha But I guess that makes sense in a way - when you've got CFS you don't tend to look sick, so I guess it's hard for people who don't know about it to understand.
I don't really have a long term plan, but I was managing to keep myself chill about that until quite recently. Last night I could hardly sleep cos I kept thinking about how behind I am and how much schoolwork I have to do. I'll never be able to catch up now, but I'm hoping after I get my psychometric report back from the neurologist things will clarify themselves more and we can get a plan formulated. So kinda in a limbo stage atm, but that's okay. I've started writing a book series to keep my mind off it Smiley Very Happy and it's working! It gives me something else to think about on days when I can't do anything.
Enough about me though, how is everyone else going? Would love to hear how you guys manage the life stuff with chronic illnesses! Love and happy thoughts to all of you, hope everyone is okay during these wild covid times xox

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 24-08-2020 08:48 PM

Hi @TawnyOwl! How are you?
Thanks for asking about me. I don't have to see the specialists in charge of the kidney surgeries I had this year for at least a year (yay!) unless I have another episode before then. They were happy with what I was doing and the kidney doctor didn't want to put me on medication because I would have to take it for the rest of my life, but if I have another episode (which I understand is a high probability in my case), they will put me on it. Another bit of good news: I no longer have to have surgery on one of my eyes because the ophthalmologist no longer thinks my scar is causing my symptoms, and that they are the result of another problem I have. I still have symptoms but he said my eyes look better and I have to continue on my medications until I next see him.
My sister is managing with doing school part-time and just got some new provisions that allow her to have a whole day to finish an exam rather than a few hours due to her seizures. We can also write her answers for her and she can type them. So many students with FND have to drop out of school though. I feel like she will do so eventually if she doesn't get better but she has been getting good grades. We were told that it is best for her to take on as many subjects as she can currently do and then drop subjects later on or extend the time she needs to finish school if she needs to.
That must be so frustrating that a lot of people think you're making up CFS! 😞 My sister and I have got that a lot from our conditions. It's hard to have conditions where everyone is affected differently or are 'invisible'. Some people also do not think of the condition being a possibility because we are young. It was such a hassle to get diagnosed this year and no one (including my parents, doctors and the medical imaging place I went to) believed that I had kidney stones because I didn't look like I was in pain and I was doing my usual things. When my dad and grandpa had them, they were apparently carrying on a lot more than I was, despite my case being worse than they were. I had better luck with the emergency department and they immediately suspected it and did the necessary tests. But it was a bit shocking being alone in hospital and eventually being given the diagnosis and told I would be having surgery within the next hour, and the urologist worrying about sepsis. The urologist said that I would have carried on until I collapsed or something suddenly, at which point it would be life-threatening, and I didn't look to be that unwell because I was young.
I think it's totally okay to not have a long term plan. A lot of people end up having to take time off or postpone their plans eventually. I actually regret not doing my degree part-time, but my university wouldn't allow it in most instances. I hope the psychometric report helps you get the supports that you need. 🙂 We're currently in the process of applying for other supports for my sister so we're waiting on some reports from her physio and OT.
The book series sounds so cool! I used to write stories when I was younger but I'd like to get back into it.
My grandma (who I was also caring for) went to hospital a little over a month ago so I had to take some time off from some things. I have a thread about it, but it's a bit of a long story. She's doing better medically now but will most likely have to go to a nursing home. I feel like the stress kind of flared up my sister as well so she now has new symptoms. Every week, there is something new but the symptoms kind of 'cycle' so some of them disappear for a while. My parents are okay though.

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 27-08-2020 07:18 PM

So... idk if this'll help anyone but if you're looking for things to make your life easier, they don't have to be specifically for young people with chronic illnesses.

Like there are a bunch of things marketed for older people which really help with things like mobility and balance.

And there are a bunch of things for little kids which help with strength, coordination, and crawling (if you're like me and can't always walk around the house)

 

 
 
 
 
 
Dream_State
Dream_StatePosted 12-01-2021 01:10 AM

Hey guys!

It’s been a while so happy new year and Christmas etc. 

 

I wanted you guys advice on this: I have obvious surgical scars across my stomach and shoulder blades. As a teenager, lots of my friends wear bikinis now and I’m struggling a bit with my self confidence. I feel like a little kid wearing a one piece but I don’t know what to do.

Has anyone else experienced something similar?

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