Social media HU platforms and special needs/disabilities.

Hi everyone,

I think that it is important that members are assured of their safety using social media and I for one believe that HU platforms are amongst the friendliest and safest. And to reassure you I gave HU my full contact details to HU so they know who I am and where I live, as members safety is paramount to all of us and we want our members to not only feel protected but know that they are protected the best that we can.

So what are the advantages of social media to those of us with special needs? The ability to communicate with others in similar situations and most importantly on the HU platforms know that all members needs and rights will be respected.

For me being a coeliac who has microscopic colitis I have to be very careful with everything that I eat and drink and have to avoid all alcohol. Unfortunately socialising usually involves eating and drinking to so I feel self conscious and end up explaining why I don't drink alcohol, so socialising on social media is a perfect medium for me as I can admire food that I cannot eat and chat to like minded people. And I don't feel isolated.

So we want you to know that you will get unequivocal support on here regardless of your needs or skill sets.

If any members feel that they have special needs and want extra support then please just say by contacting 'us' your admin moderators by pm as we all have special dietary needs: healthunlocked.com/healthye...

Here's a link with a well written blog by Rebecca Thorne a blind person but the fact that they have felt bullied on social media is unacceptable as we will not tolerate bullying of anyone full stop. And you can have that in writing.

everyonecan.org.uk/news/soc...

Thank you all for your support and contributions as this is our forum...

Jerry 😊

[Activity2004 Administrator]

This is a great posting and information for everyone to think about when online/HU. Thank you for posting it!😀👍

[Hidden in reply to Activity2004]

Thanks Leah, we look out for all our members and want them to know this. 👍 😀

[Hidden]

Hi Jerry

Thank you so much for taking the time to post the information above, I really appreciate it and I can see the amount of dedication you have to HU.

I have heard of Colitis many times but didn't really know what the symptoms were so have looked them up, oh my goodness so similar to IBS, there are so many gut diseases out there. I really feel for you with Coeliac Disease and Microscopic Colitis, I admire the way in which you post on the forum, you always sound so positive but have a lot to cope with with your health.

I really do hope that the vaccine trial in Australia for Coeliac Disease is successful and you will be able to have a vaccine for the condition. I also hope that there is something that can cure Colitis as well.

Well done Jerry and thank you so much for posting.

Alicia

[Hidden in reply to Hidden]

Thank you Alicia, since being diagnosed everything changed for me as Dr's kept saying I was too healthy to have anything wrong with me so being an un diagnosed coeliac my immune system attacked my colon causing inflammation of the cells and this caused internal bleeding but through diet I have kept it under control and got a badge for being a blood donor when it was diagnosed through anaemia. So my diet works for me and I feel so healthy I went out for a quick 3+ mile walk late afternoon as I just crave getting some fresh air sometimes.

When I was 6 years old because I had un-diagnosed coeliac Dr's sent me to see a psychiatrist he said I didn't need to see a psychiatrist which was a shame as I enjoyed it.

What I've learnt to do over time is accept that this is how Mother Nature made me and I have to accept my limitations. And I enjoy my life and make the most of what I can do.

I feel for you and others with IBS as I've suffered similar symptoms so hope that the FODMAP diet works for you.

I enjoy the forums because we are what we are and except each other for just that.

You are also very enthusiastic and thats contagious so we are all part of a support community and it works.

Jerry 😊

[Fran182716 Prediabetic in reply to Hidden]

It doesn’t sound easy to manage your condition Jerry, but you have done so well to find all the work-arounds and still produce delicious healthy food.

I also understand the problem with non obvious disabilities, though mine is not a big deal usually, I have reduced bladder size as a little was removed when I had a hysterectomy as they were stuck together, and so there’s also some scar tissue. The bladder works normally but fills up quicker than most peoples so unless I restrict fluids I need to “go” more often and it can get painful if I don’t. Yesterday on my lunch break I was out and about between patients and popped into Asda for a drink and the loo, the ladies was shut for cleaning but I was bursting so used the disabled loo, and got a filthy look from a member of staff when I came out which I found quite upsetting. I was only in there for a couple of minutes and no one else was waiting to use it. Wish I had said something to her now about not all disabilities being visible but at the time I just hurried out to my car.

[Hidden in reply to Fran182716]

Hi Fran, we can be very resourceful when need be and thats what it's all about, finding what works for us.

I think that's a shame that you were made to feel bad when you used their shop and had every right to use the facilities without judgement.

So you did the right thing for you without any inconvenience to anyone else, so isn't it sad that some one can get uptight because they want some one to not be able to use the loo...I'd say they're the one with a problem.

It's easy for our disabilities to make us self conscious and over sensitive it's human nature so you're A- OK in my book Fran. 😊

[Hidden in reply to Hidden]

Hi Jerry

I can well imagine that things changed a significant amount for you and to be an undiagnosed coeliac must have been awful for you. I have a close friend who is coeliac and had some chips a few months back and didn't think anything of it and she was very poorly being sick and had diarrhoea and then realised that of course the chips were cooked in the same oil as fish in batter. It's an awful illness as it doesn't take much to upset the whole system. The problem with these diseases is that they seem to be quite hard to detect sometimes although I think testing for coeliac has improved as I've been tested for it twice now.

I can only imagine what you went through when you had internal bleeding and being an undiagnosed coeliac, it must have been awful. Well done on getting a badge for being a blood donor, I used to be a donor but ended up being turned away each time I tried to give blood as I always seemed to be on the verge of anaemia. I can see what you put on the forum that you have a very healthy diet and I admire the way in which you are so positive and always keep an eye on what you are eating; I'm so glad you feel so healthy on the diet, that's a real bonus. It's great getting out in the fresh air; I went out for a power walk yesterday and ended up jogging most of the way but today it's been a short walk around the coast as we've had some very heavy showers here with hail. I've never heard of anyone say they enjoyed seeing a Psychiatrist but I should imagine it's a positive and enjoyable experience.

Well done on your acceptance as I know I've struggled since the food poisoning in November 2018 as I've never felt so poorly for so long but since starting this low fodmap diet I have been feeling so much better and a lot more positive. I do find that going out really does help. I'm in awe of you on how you handle your conditions and enjoy life, that's excellent to hear so well done.

The diet is going very well although I have had a hiccup today. My daughter bought me some chocolates for Christmas, this isn't something I eat very often as I normally only have a couple of squares of very dark chocolate each day. The chocolates are quite nice but a little too sweet and rich for me but I had a couple last night to finish them off and my tummy has been a little off today so I can only think it's the chocolates as the meals I've been making are all low fodmap meals I've printed from the internet or made from my low fodmap book.

The forums are really good and it's great to be talking to like minded people, I'm so glad I joined HU.

Thank you Jerry, I do tend to be enthusiastic about exercising outdoors, I'm not so good indoors.

[Cooper27 Administrator in reply to Hidden]

Unfortunately I've been advised the vaccine trials for Coeliac Disease have now been terminated, as they failed in the latest round of trials.

[Hidden in reply to Cooper27]

Hey thanks for the update, it must be very complicated to try and cure coeliac.

Being an optimist at least with global markets we have a wide range of healthy gluten free alternatives. 😊

[Hidden in reply to Cooper27]

That's such a shame, we will get there though I'm sure. Thank you for the update.

Also, as Hidden said there is a wide range of gluten free alternatives out there.😊

[Cooper27 Administrator in reply to Hidden]

I'm hopeful they might adapt and try again, we just don't know. Would be lovely if people could socialise with more confidence

[Hidden in reply to Cooper27]

I'd be surprised if they gave up as they got quite a long way.

[Zest]

Hi Hidden

Thanks to you and the rest of the HU team for all your dedication to this great forum - you are much appreciated. This information is helpful - thanks.

Zest

[Hidden in reply to Zest]

Thank you Zest this is very kind of you and we appreciate yours and everyones input.

Jerry 😊

[Cooper27 Administrator]

Well said Jerry

[Hidden in reply to Cooper27]

Hey thanks 😊