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Re: Chronic Illness Support Squad

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?

Re: Chronic Illness Support Squad

@TawnyOwl  I hear you. Juggling a chronic illness with school can be so hard. Smiley Sad 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?

Re: Chronic Illness Support Squad

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.

Re: Chronic Illness Support Squad

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! Smiley Very Happy
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

Re: Chronic Illness Support Squad

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 Heart

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 Smiley Very Happy

Re: Chronic Illness Support Squad

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! Smiley Sad 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. Smiley Happy 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.

Re: Chronic Illness Support Squad

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)


Re: Chronic Illness Support Squad

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?

Re: Chronic Illness Support Squad

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! Heart

Re: Chronic Illness Support Squad

Thank you @Kaylee-RO, it’s great to have an avenue to discuss this, I really appreciate it!

I think it’s my own reflection, admittedly I’ve been seeing a lot of my friends post photos of them in bikinis this summer, which is new for them

It’s funny because a while ago my surgeon said to me, totally out of the blue, that if I want when I’m older I could have them reduced. It got me thinking and I knew I really didn’t want that. They are a part of who I am and the thought of not having them seems really strange to me. But when I’m with people who aren’t used to seeing them in change rooms etc it can feel kinda weird.

I’ll have another look around, the added comfort of a one piece is a plus Smiley Happy
Thanks again