how do i turn diagnosis into something positive?

Former Member

the past few months have been so crazy, but i just feel lik i'm collecting labels so far i have:

IBS (irritable bowel syndrone)
PTSD (post traumatic stress disorder)
Irlen's syndrone (a problem with the colour balance in my eyes)
Severe dyslexia
Possible (probable) dyspraxia
and possibly about 3 other things which i'm still being tested for...

the latest of these being the irlen's, which means that i'm going to have to start wearing tinted glasses (we think either red or purple, or an in between), and with all of this i'm starting to feel like a complete freak...

how can i view these diagnosies (sp?) in a positive light...

Former Member

Once you know whats affecting you and your health you know how to cope with it. You've probably spent years coping without knowing the whole story, and even just knowing can be a relief. Use your doctors/specialists to give you as much information you want and make any changes you need to help you cope. Might take a while, and I do mean months, to take everything in, but in the long term you will be grateful for knowing. It took me years to get my PCOS diagnosed and sorted out, but it the long term its worked out really well.

Former Member

well, it took me 16 years to get my IBS diagnosed, but now theres nothing that can be done...and that seems to be the case for the majority of my problems, and thats frustrating...

Former Member

I know it's hard to see the positive, but it's worth remembering that most of these things aren't new to you and you've been doing ok so far.

You may find that the glasses help a lot with the dyspraxia too, better vision can only help that.

As for the IBS, that doesn't sound like anything new but at least you have sort of got a reason for the problems. You may find that diet can make a big difference and I have a feeling one of my mates had a really good cookery book for people with IBS. At least now you've got some clues as to what may help with the symptons even if nothing can actually be done.

Getting PTSD recognised is the biggest challenge with it, the next step is dealing with it. Hopefully whoever has diagnosed it is trying to get you some support, be that counselling or something else. Equally you may feel you don't need anything other than to identify what triggers problems for you and how to manage that which you may be able to do yourself, you may need some help to do.

Sorry, I realise that is a whole pile of waffle, but hope it helps a bit. Don't take them as labels, take them as the technical terms for you and carry on.

xxxx

Former Member

When i found out i had HIV i saw it as positive

Ba doom kish

Former Member

i suppose, part of my problem is that i don't feel like i'm getting the support that i need, well for my dyspraxia, dyslexia and irlen's (as long as i can get the funding for my new specs, which are £300 quid and take 6 weeks to make) i have got a really good specialist teacher, but no support out of college. but for everything else, i get no or little support. my therapy is about to end, and i've got to face a 6 month waiting list for more psycotherapy. considering i'm having a least 1 panic attack a week, sometimes 4, i'm not sure how i'll cope. I've done so many elimination diets, i haven't found anything makes a difference, apart from not being so stressed out...well, aromatherapy and this herbal stuff i've been taking has helped to an extent but it's still quite bad...

Former Member

Must be really tough for you.

Grab every opportunity you see for help, support and funding, and it's always worth mentioning to the people you do see that you are lacking support in other areas.

Even if the elimination diets haven't helped (and it sounds like its stress mainly tbh) then you will probably find that the plain, healthy home cooked straight meat veg and potatoe type stuff is better than the processed foods.

Keep it up, and remember that all things considered you are doing a damn good job, and even without any conditions or history you're still doing well!

xx

Former Member

i cook everything! i've been known to come home and cook pasta at 3 AM!

i really don't eat much processed food as it is, i really think it is stress, which is very hard to reduce. and it doesn't help that the last few months have been absolute hell...

maybe a while away will help!

Former Member

I know exactly how you feel sweety... I really do.

I went through a time when I seemed to be at the doctors or hospital all the time. I have one kidney, Spina Bifida Occulta, Dyscalculia, Two wombs, Endometriosis... had a heart murmur at one point, divergent squint and short sighted, adhesions etc etc etc...

I went through a time when I felt like such a freak. But please don't. Everyone is unique... you're uniquness just means you happen to have these things. You'll probably learn to like it being part of you, because when you've been diagnosed with something it helps you know how to deal with it, so gives you a better way of living really.

It will probably just take time for you to take this all in, it's quite something to find out things about yourself you didn't know about before... it's like you've been keeping secrets from yourself which can feel a bit weird... But you'll get used to it and see the good stuff which will come of it with a bit of time hun.

Former Member

At least you know what's wrong with you - they doctors have no idea what's wrong with me still, after 2 months... (and 5 doctors appointments)

Even if the elimination diets haven't helped (and it sounds like its stress mainly tbh) then you will probably find that the plain, healthy home cooked straight meat veg and potatoe type stuff is better than the processed foods.

:yes:

Former Member

aw, well HUGS and chin up. At least some of the diagnosis can be put to good use in getting you treatments that will actually help make your life easier. If you run out of funding for things, or think the funding hasn't been assessed properly, there are things you can do to appeal certain decisions. I don't know much about it, but the patient liason service people might be the right place to start if you need help with that.

x

Former Member

twisted_trinity wrote: »

i cook everything! i've been known to come home and cook pasta at 3 AM!

i really don't eat much processed food as it is, i really think it is stress, which is very hard to reduce. and it doesn't help that the last few months have been absolute hell...

maybe a while away will help!

Have you tried relaxation techniques and stuff like that?

(as long as i can get the funding for my new specs, which are £300 quid and take 6 weeks to make)

If you're under 19 and still in education, can you get 30% off this?

As for how you can turn this into a positive thing - at least you know what's wrong with you and can hopefully get the treatment needed to make life easier for you.

About the IBS - have you kept a food diary and tried working out what you can't have from there? I had to do this, but I sometimes found that I would react to wheat (which I'm intolerant to) and sometimes wouldn't.