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Chronic illness sucks.

Hello, hi.

 

Um.. it's hard to write atm because my head feels kinda off. But I just really need some help or some sympathy or something.

 

So.. I have FND which results in random and unexplained neurological symptoms which can be anything from a sore foot to a seizure.

I have HSD which means instead of connective tissue I have jelly or something, and my joints are getting tired of dislocating and bending backwards and whatever.

I have a heap of mental illnesses.

 

And now I have new symptoms which can't be explained by any of the above.

I'm really tired of the fatigue and nausea and dizziness.

 

I'm tired of 90% of doctors not listening to me.

I don't understand why they don't believe me.

 

I have a new doctor now. I've already had a blood test. But I have to wait nearly two weeks before I can even see her to talk about the results.

 

I don't even know what I want to say here. I'm just sick of feeling sick.

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Re: Chronic illness sucks.

I'm sorry you're feeling this way @Tiny_leaf Smiley Sad. It must be tiring having to cope with all this and never really getting a break. Some doctors are trained to match symptoms with illnesses so when things look different than what they're familiar with, they can get quite skeptical. It sucks but there are doctors out there who will listen. I hope your new doctor is one of them Heart.

 

Good luck with your next appointment and here's hugs and love and teddy bears in the mean time

giphygiphygiphy

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Re: Chronic illness sucks.

Hey @Tiny_leaf, so sorry to hear about your situation. Chronic illness does suck, my partner has CFS (chronic fatigue syndrome) and FM (fibromyalgia). She experiences many of the issues you have described so I do truly understand the difficulty of it, my heart goes out to you Heart.

It is unfortunate that some of our doctors today are not trained in these areas and do not how to approach these issues, my partner would often stress the same concerns. But as @November13 said, they are out there and best of luck with your new doctor! In the case of my partner, she had a lot more luck with alternative doctors, who seem to be better trained or even specialise in these areas.

I know its hard but try to stay positive, we're all here for you Smiley Happy

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Re: Chronic illness sucks.

hey @Tiny_leaf
as someone who also sufferred chronic illnesses i can understand how hard it is and its even harder when drs just dont want to listen or they blame it on another physical/mental condition
i dont really have any advice but wanted you to know im hearing you
**NEVER be afraid to ask for help because you're WORTH it!**
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Re: Chronic illness sucks.

Hey @Tiny_leaf 

I'm so sorry about what you are going through Smiley Sad it sounds super tough to deal with that, especially when doctors won't listen and you feel like nothing is working.

 

I don't have those problems but I suffer from Rheumatoid Arthritis so I completely understand the frustration with doctors not listening or not believing you. It took them just over 2 years to diagnose me and begin treatment, and even with that diagnosis, whenever i saw a new doctor (public health system was annoying in that way), they often wouldn't believe me when i said that other joints started hurting. I told them my back was in a lot of pain and a lot of male doctors dismissed it for period reasons but finally when i saw a female, she recoginised it wasnt period and found out i had one of the worst RA cases in my lower back roughly 7 months after i started telling doctors about it.

 

I know how difficult it can be when doctors and others dont believe you or dont understand the severity of the pain and annoyance illnesses can bring, but know how strong you are for handling these illnesses Heart You are amazing for making it this far and are such an inspiration to other people who have chronic illnesses, like me. 

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Re: Chronic illness sucks.

Hey @Tiny_leaf I'm so sorry to hear that you're going through these things. Health issues are confronting, and it's saddening to hear that the doctors haven't been meeting your needs. Doctors should be willing to address your health concerns and should not be dismissing them Smiley Sad

 

The ReachOut community is here for you if you need to talk some more, or need some support. In regards to advice, have you tried indulging yourself in some self-care? You wouldn't need to do anything too laborious, you could try listening to some music, writing your thoughts in a journal or relaxing in a nice, hot bath, amongst other things. 

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Re: Chronic illness sucks.

Firstly thank you everyone. It is nice to feel less alone.

Also trying to get doctors to take RA seriously while you're young sounds like a nightmare...

 

 

My legs hurt so much... I need to take Leo for a walk but I'm not really able to..

 

My NDIS plan has come back and this is one of the times I wish I was allowed to swear at organisations on here.

I only had just enough funding last year because of a worldwide pandemic halting everything for a few months but they've decided that I need basically no more support than I got then.

So now I get to fucking fight them over this while dealing with a heap of debilitating illnesses that they won't even fund me for.

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Re: Chronic illness sucks.

Hi @Tiny_leaf ,

We are here to support you and you are not alone. It is disappointing when the support you're counting on is reduced. I hope that they hear you and help you with the appropriate supports.

It must be hard when you're already struggling to have these confrontations.

Please be kind to yourself and listen to your body, it sounds like it has been a tough couple of days for you.

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Re: Chronic illness sucks.

RA sucks to deal with, especially with the stigma about it and misunderstanding that a lot of people and organisations have, which sounds like what you've experienced @Tiny_leaf .

 

I've never gone through the NDIS so i don't know exactly how it works but i honestly know how frustrating places can be who say they wanna help but aren't able to give or dont want to give a lot Smiley Mad 

 

I know how hard it is having to do so much when your illness is so debilitating; especially when it flares and theres nothing you can do. I'm so sorry for all that you have to go through and i wish i was able to do more for you Smiley SadHeart Do you know if there is any other organisations that are able to help you or if you are able to set up maybe a donations page to see if other family and friends are able to help you get by, even if it is just for a little while?

 

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Re: Chronic illness sucks.

I'm sorry you're going through this @Tiny_leaf. Smiley Sad Chronic illness does suck.
I wish your doctors would listen to you. There can be a lot of stigma and misconceptions about FND, even from the medical community and people who claim to 'specialise' in it. I know from my experiences with my sister that it can also be hard to find doctors who are willing to help and there can be extremely long waiting times. Navigating the NDIS can be very frustrating too. Smiley Sad
I don't know if there is anything I can suggest that might help but I just wanted to say that we're here for you. Heart