Bunbunny234
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Hi so I'm new to this forum and I kinda want to start a new stubject.. Disabilities... I am classed as disabled and it makes my life quite difficult sometimes. I have Postural Orthostactic Tacycadica Sydrom (PoTS), Joint Hypermobilty Sydrome (JHS), Elhers-Danlos Syndrome Hypermobilty type 3(EDS), Chronic Fatigue Syndrome (M.E, C.F.S), Psoriatic arthritis, Chrons disease, and I'm classed to have a form of Disautonoma and Reflex Anoxic Syncopy. I am still under going tests for my heart, M.E and I'm having a head/brain MRI scan. I just wanted to know if there is anyone out there that can relate to me? I also suffer with several mental problems, such as sever anxiety disorder, OCD of many forms and had previous Separation Anxiety Disorder and Social Anxiety. If you have anything to say on this please do. Thank you xx
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04MR17
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(Original post by Bunbunny234)
Hi so I'm new to this forum and I kinda want to start a new stubject.. Disabilities... I am classed as disabled and it makes my life quite difficult sometimes. I have Postural Orthostactic Tacycadica Sydrom (PoTS), Joint Hypermobilty Sydrome (JHS), Elhers-Danlos Syndrome Hypermobilty type 3(EDS), Chronic Fatigue Syndrome (M.E, C.F.S), Psoriatic arthritis, Chrons disease, and I'm classed to have a form of Disautonoma and Reflex Anoxic Syncopy. I am still under going tests for my heart, M.E and I'm having a head/brain MRI scan. I just wanted to know if there is anyone out there that can relate to me? I also suffer with several mental problems, such as sever anxiety disorder, OCD of many forms and had previous Separation Anxiety Disorder and Social Anxiety. If you have anything to say on this please do. Thank you xx
Wow, that's quite a list you've got there!

I too am disabled, though nothing very major (I'm just partially deaf).

Do you sometimes find it difficult to work out which condition is causing which problem?

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And welcome to :tsr:
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Kindred
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(Original post by Bunbunny234)
Hi so I'm new to this forum and I kinda want to start a new stubject.. Disabilities... I am classed as disabled and it makes my life quite difficult sometimes. I have Postural Orthostactic Tacycadica Sydrom (PoTS), Joint Hypermobilty Sydrome (JHS), Elhers-Danlos Syndrome Hypermobilty type 3(EDS), Chronic Fatigue Syndrome (M.E, C.F.S), Psoriatic arthritis, Chrons disease, and I'm classed to have a form of Disautonoma and Reflex Anoxic Syncopy. I am still under going tests for my heart, M.E and I'm having a head/brain MRI scan. I just wanted to know if there is anyone out there that can relate to me? I also suffer with several mental problems, such as sever anxiety disorder, OCD of many forms and had previous Separation Anxiety Disorder and Social Anxiety. If you have anything to say on this please do. Thank you xx
Hi there. Thanks for introducing yourself and welcome.

I'm not sure I'd class myself as disabled, but I do have a few conditions. I have a couple of deficiency-like things along with dyslexia, ADD and some past MH issues (depression and OCD). Most attention seeking at the moment though is my more recent diagnosis of an autoimmune arthritis. Luckily it's easy enough to manage on a day to day basis, but it has shaped my life quite a lot. Things for me kicked off around GCSE and since then it's been a bit of a mess.

Doubt I can relate to a lot of the specifics of what you're going through, but I do know a bit about being a less than 100% health young person.
I think I've also seen some of those conditions mentioned around here before so you're not alone.

So what for you is one of your biggest challenges and is there anything positive you can think of relating to your conditions?
One of the biggest challenges for me is limited energy which means I can't do a whole lot and honestly kinda great doing stuff sometimes.
One of the positives is it's lead me down since routes that I think have helped me to develop as a person and also find some experiences I doubt I would have otherwise and get to know some good people and communities. I wouldn't say it's all been worth it, but my challenge have helped me to see a lot of beauty in the world and I like to think it's also helped me be more empathetic and understanding of others.

So yeah. Hello and thanks for joining in with things. it's always nice to hear from people.
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Pathway
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EDS classification update information in case you wanna know OP:
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JHS and hypermobile EDS (previously known as Ehlers-Danlos syndrome type 3/hypermobility type) were essentially the same thing according to Prof. Rodney Grahame (pre-March 2017). Having said that though, as of March 2017 JHS isn't an actual diagnosis (the EDS society got rid of it when they all got together at the symposium to update the clinical criterias for each type of EDS, and made some other types, e.g. cardiac-valvular EDS, cvEDS, and a new set of related disorders). Anyway, now it's either EDS (of some variation, e.g. hEDS, cEDS, clEDS, etc.), a hypermobility spectrum disorder (HSD) or some other connective tissue disorder (e.g. Loeys-Dietz Syndrome, Marfans Syndrome, etc.).


Well anyway, I have hEDS and suspected MCAS, POTS, CNS apnoea, some kind of cervical instability and some gastrointestinal issues (they're all either under investigation or have been suggested as potential causes of my symptoms) among other physical issues. I do also have some MH issues, namely severe complex PTSD, depression and anxiety. I've also been told by various psychiatrists and other people involved in my care I have Anorexia Nervosa, but MH services tend to drag their feet with helping me out with that, so haven't even officially diagnosed me yet. :rolleyes:

Anyway, I relate. I currently don't work because of being too ill to.
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chelseadagg3r
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(Original post by Bunbunny234)
Hi so I'm new to this forum and I kinda want to start a new stubject.. Disabilities... I am classed as disabled and it makes my life quite difficult sometimes. I have Postural Orthostactic Tacycadica Sydrom (PoTS), Joint Hypermobilty Sydrome (JHS), Elhers-Danlos Syndrome Hypermobilty type 3(EDS), Chronic Fatigue Syndrome (M.E, C.F.S), Psoriatic arthritis, Chrons disease, and I'm classed to have a form of Disautonoma and Reflex Anoxic Syncopy. I am still under going tests for my heart, M.E and I'm having a head/brain MRI scan. I just wanted to know if there is anyone out there that can relate to me? I also suffer with several mental problems, such as sever anxiety disorder, OCD of many forms and had previous Separation Anxiety Disorder and Social Anxiety. If you have anything to say on this please do. Thank you xx
Looks like we have a lot of the same problems! I have CFS, fibromyalgia, suspected dysautonomia, syncope disorder, hypermobility syndrome, some kind of blood disorder, under investigation for rheumatoid arthritis, and have a bunch of mental health problems. I've had a head/brain CT and an MRI, so just shout if you have any questions!
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