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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

Comments

 
Iona-RO
Iona-ROPosted 11-02-2022 03:42 PM

Hey Chronic Illness Support Squad! 

 

I just wanted to revive this thread and check in to see how you're all doing 😊

 

I have ADHD, ASD and ME/CFS, which can be really tough at times (A LOT of the time lol). But having a community around me of other disabled/chronically ill people that understand what it's like really helps me.

 

Maybe it would be nice to answer a few questions about our experiences so we can see how other people relate to what we have to deal with on the daily?

 

1. What has been your biggest struggle with your chronic illness/disability?

 

2. What is something that has really helped you?

 

3. What is something you're proud of yourself for achieving against the odds?

 

💜

 
 
yummychipmunks9494
yummychipmunks9494Posted 20-04-2023 06:59 PM

hi! i am new to the group and i just want to hang out with other people!

I am neurodivergent and i am autistic with adhd.

 

1. my biggest struggles with audhd is that there aren't really enough accomodations in my school (and public places) for disabled people like me, and i am hyposensitive (underwhelming sensory issues) which means i need to stim more than usual, which some people call me annoying for. i also am hypersensitive (overwhelming sensory issues) which i can't handle loud noises, bright lights, gross food tastes or touch. my adhd makes me pretty fidgety too, i can't really focus well in school but i usually take meds when my focus is out the window on one day. (I was recently diagnosed 🙂)

 

2. i have learnt some amazing things to help with sensory issues. my sensory overloads require me to sit in a quiet dark cool room with noise cancelling headphones which really helps calm me down and get my sensory levels to a normal level. i also have panic attacks which i also do the same thing for that.

 

3. being able to cope with rude ableist people at school, i would crumble at the end of the day from kids being ableist, but now it doesn't really bother me. 🙂

 

even tho it has been hard with audhd, my life has been amazing and i have found myself in multiple communities where i feel welcome. 😄

 

 

 

 

 
 
 
louie_al3x
louie_al3xPosted 21-04-2023 02:04 PM

Hi @yummychipmunks9494 !

 

I can realte to being hypersensitive i also can't handle loud noises, bright lights, and certain food stuff! Welcome to the forum! I'm still new here, but i wanted to let you know I'm super proud! School can get really tough for ND people, myself included!

I'm always here if ya need support or anyting ❤️

 
 
 
Chloe-RO
Chloe-ROPosted 20-04-2023 11:28 PM

Hello there @yummychipmunks9494 ,

 

Welcome to the forums! I hope you will indeed find this space a safe, and accepting online community.

 

It's go good to hear you have found some inclusive spaces for you to 'hang out' in and feel welcome. This is so important for one's wellbeing. I'm so sorry to hear that school is less understanding in terms of your hyper-sensory issues as well as your stims. Do you have an inclusion officer or wellbeing co-ordinator you can speak to about looking at adjustments made for your learning.

 

As much as the education system is moving towards inclusivity, it seems like they have a long way to go. Perhaps you can be one to lead the movement in your school? What do you think?

 

Please continue to reach out. You are not alone.

 
 
louie_al3x
louie_al3xPosted 19-04-2023 07:38 PM

hi! i'm Lou, also new to the group :3 i have type one diabetes, narcolepsy, ocd, autism and chronic fatugie 

 

1. What has been your biggest struggle with your chronic illness/disability?

just sorta, learning to live with it. everything i have either can't be cured, or is hard to treat. coming to terms with it all has taken me most of my life 😅

 

2. What is something that has really helped you? 

having a sense of self, knowing that i am still a person despite my condition, and finding people that know how i feel!

 

3. What is something you're proud of yourself for achieving against the odds?

going to school, when i was first diagnosed with everything it seemed completely out of the picture, but despite everything i still push to go everyday!

 
 
Ba2
Ba2Posted 12-02-2023 01:15 PM

Hi, my name is Ba2. I just joined the group and I have epilepsy, celebral palsy, ADHD. 

1. My biggest struggle is to use my right body, espacially things for like soccer, grabbing objects, cutting, shoe tying... 

2. Distracting myself. Like singing, exercising, meditating. And just because I can't use my right side doesn't mean I can't exercise. I can but it's just harder for me.

3. Playing soccer, singing, drawing, proving the people who didn't believe in me wrong.

 

 
 
 
Chloe-RO
Chloe-ROPosted 12-02-2023 01:20 PM

Good on you @Ba2 !

 

Thanks for sharing what works for you! You're resilience and perseverance is really shining through!

 
Tiny_leaf
Tiny_leafPosted 20-08-2021 10:50 AM

Finding out that my doctor from a few years ago was actually useless and that I've probably had ME/CFS this whole time.

This doesn't change how I manage it, but does explain why my ability to do stuff hasn't improved with my depression.

 

It's just annoying because early diagnosis has been proven to really help and I could've had that if my doctor at the time actually kept up to date and taken me seriously.

 

Anyway mine is only mild to moderate and suprisingly well managed considering I've just been imrovising this whole time.

But also it's good to know why I have a roughly one activity per day limit or why I get so exhausted doing things that are enjoyable and not physically demanding.

 
 
Emily-RO
Emily-ROPosted 20-08-2021 01:41 PM

Hey @Tiny_leaf
Thank you for sharing this with us. 
It sounds really frustrating that your doctor didn't diagnose you earlier. It's amazing that you've been able to support yourself so well and managed your wellbeing.
Do you feel like you have the right diagnosis and can access support now?

 
Tiny_leaf
Tiny_leafPosted 20-03-2020 09:02 PM

@WheresMySquishy this is a brilliant idea!

 
 
scared01
scared01Posted 12-06-2020 08:56 PM
how am I only just seeing this thread now!
great thread @WheresMySquishy

I have chronic illnesses too, though I really wouldn't want anyone to have them its nice to know im not alone.
 
 
Hozzles
HozzlesPosted 21-03-2020 04:47 PM

Ahh, you're an absolute legend @WheresMySquishy! Absolutely above and beyond with the resources! Smiley Very HappyHeart I've also been looking for a thread like this for a while, I feel chronic illness often goes so unrecognized and unsupported

I'm not diagnosed with a chronic illness, but I really feel like I may be. How on earth does anyone go about getting diagnosed!? I've had a bunch of symptoms that impact my functioning lately (extreme fatigue and brain fog being the biggest problems), but every doctor I go to just dismisses it as anxiety. I know it's not anxiety!

 feel like within the last ten or so years I've never been to a doctor without them mentioning my anxiety... except when I broke my arm, but that can't really be caused by anxiety. Even when I had an infection from a cat bite that I ended up having to go spend a day in hospital for, the initial doctor I went to said I was worrying too much. Like, thanks. Smiley Frustrated

 
 
 
Goodvibes1
Goodvibes1Posted 04-02-2021 04:11 PM

@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 😞 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 🙂 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 🙂

 
 
 
WheresMySquishy
WheresMySquishyPosted 21-03-2020 08:48 PM

I know what you mean about how long it can take to get diagnosed @Hozzles! It must be such a frustrating experience for you. I think that doctors can be too quick to dismiss you if you don't look sick or pin the cause on something psychological. I really think that GPs should receive more training. Even if something turns out to be functional or they cannot find the cause of it, I believe that they should still give the patient some options to do something about it, especially if it's impacting on their life.
I can relate to your story about the infection! It kind of reminds me about what happened with my kidney stones. I was told that I wasn't in enough pain to have a kidney stone when I needed emergency surgery.
I experienced fatigue for years, but it wasn't until I saw a new GP that I was tested and treated for iron deficiency. I think the main reason she decided to test me was because I had restless legs syndrome. I feel better when I am taking my iron tablets than when I stop taking them, so I think it was worth it to get tested.
Have you tried explaining to your doctor that your symptoms are causing a lot of problems for you and having them investigated would give you peace of mind?

 
 
 
Tiny_leaf
Tiny_leafPosted 21-03-2020 08:45 PM

@Hozzles oof that's a hard one... Doctors can suck sometimes.

Option one is get a new doctor, don't mention your anxiety at first, and tell them your symptoms.

The other (which I did) is find a list of possible conditions and walk/ drag your doctor through eliminating each one until you get an answer. But if you get health anxiety/ ocd then that might not be an option..

But keep persevering. If you nag a doctor enough they'll eventually get sick of you and do their job.

Also if possible find an ally who's going to back you up, and help you do stuff that you can't do for whatever reason.

 
 
 
 
Dream_State
Dream_StatePosted 21-03-2020 10:31 PM

 @Hozzles That’s sounds really annoying!

 

I think I get where you are coming from, I had more severe symptoms as a result of a birth defect I’ve had all my life and has been mainly addressed with surgery. I went to GP for more recent symptoms. I thought it might have had something to do with my condition. I was really quiet at the doctor because I was feeling awful. They kept asking if I had mental health problems (Which I didn’t) They kind of assumed that because I’m an adolescent with similar physical symptoms to stress that I had mental health issues. The doctor didn’t understand my medical condition and how my ‘normal’ is drastically different to most people’s. 

 

A day later I went to see my specialist who has known me since birth, I asked him whether he though it was mental health and he said absolutely not! They are still investigating but it is likely a complication common in people with the same condition as me. It felt great that one understood! 

 

I hope that helps!! In my experience it helps to see different doctors until one can figure out what’s up. Take care!

 

 

 
 
 
 
 
Jess1-RO
Jess1-ROPosted 25-03-2020 02:49 PM

Thanks for making this awesome thread @WheresMySquishy and all the links! 

 

@Dream_State I am really glad to hear that you asked for a second opinion, and from someone who knew you well. You raise a really good point that every person has their own "normal" when it comes to health, and finding a health professional that understands your history, and is open to exploring possibilities is so important! 

 
 
 
 
 
Janine-RO
Janine-ROPosted 25-03-2020 03:16 PM

Hey @WheresMySquishy , this is an absolutely phenomenal resource, thank you so much for all of the work that you've put into creating it! This is something that will be so helpful to so many people, especially as the current climate means that people may suddenly find themselves without their normal supports, having regular procedures cancelled, or facing extra challenges in social isolation when the things that normally help them to stay healthy may not be possible any more (like certain types of exercise, for example). 

 

@Hozzles  I don't have any chronic illnesses myself (apart from garden variety sinus issues and hayfever), but one of my children has a fairly rare chronic illness. Without sharing details, I can say that having a really good, thorough, understanding GP was an absolute game-changer for us. We really needed someone experienced to help to systematically work through some weird symptoms, listen to us, and refer us on to specialists when needed. 

 

It can sometimes take years for some chronic conditions to be diagnosed, especially if they're ones with fairly vague symptoms, but getting to know your own body and being a persistent advocate for your own health can play a huge role in getting to the bottom of things in my experience. 

 

The internet can be a blessing and a curse for this stuff too I find - there is a lot of misinformation and snake oil merchants out there,but there's also access to more information than ever before - personally I wouldn't advocate trusting Dr Google, but it can definitely be good to be armed with a bit of information and lists of questions to ask your healthcare professional 🙂

 
 
 
 
 
xXLexi_Lou122Xx
xXLexi_Lou122XxPosted 25-03-2020 09:56 PM
Great idea for a thread @WheresMySquishy!

I personally don’t have a chronic illness, but I do have Chronic injuries and low blood pressure.

My injuries still haven’t been diagnosed yet, but it’s probably genetic/chronic arthritis. But I shall look into those links when I feel I need them, because who knows, I might need some kind of help like that at some point, despite being quite young still. 🙂
 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 25-03-2020 10:19 PM

Hi @xXLexi_Lou122Xx! You're still welcome on this thread! 🙂
I hope that you can get some answers soon! Having health problems when you're young can be a challenge. One of the reasons I decided to create this thread was to connect with other young people with experience of chronic illness. Lots of the resources I've seen online seem to be aimed towards an older demographic and some of it isn't relevant to me, at least for my conditions.

I don't have arthritis, but I'm prone to repetitive strain injuries and low blood pressure.
Having low blood pressure can be so frustrating. After my surgeries, it was so bad that I had trouble sitting up and kept having to lie down because I felt faint. It's only in the last week or so that it's been settling down. I hope yours can become more manageable! 🙂

 
 
 
 
 
Khajiit
KhajiitPosted 29-03-2020 08:22 AM

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 ^-^

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 30-03-2020 07:12 PM

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

@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. 😞
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.

 
 
 
 
 
TawnyOwl
TawnyOwlPosted 08-04-2020 07:27 PM

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 

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 10-04-2020 07:15 PM

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. 😞 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. 😞
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!

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