Hi, my name is 6point5!

6point5

Hi everyone, I'm 38 and a single mum to 5 kids, I have a long term disability and I'm starting to struggle emotionally,  I do have these moments, but all I can see isome things getting worse not better

Ami2301

Hi @6point5 welcome to the community!

Sorry to hear that you are struggling. Would you mind telling us what disabilities you have? We want to help you as much as we can!

6point5

ok, i have ehlers danlos syndrome, Postural orthostatic tachycardia syndrome , osteoporosis, asthma, Peripheral artery disease, autoimmune disease.
Thats it, i think, untill next time i go to the hospital and they decide to add something else to my list x

Ami2301

You're not alone as many members of the community suffer with the same conditions as yourself and I'm sure they will be more than happy to get in contact with you to offer support.

Forgive me but I have not heard of Postural Orthostatic Tachycardia Syndrome before, would you mind explaining what this is?

It is incredibly difficult to come to terms with disabilities, in time you will be able to accept them by finding ways of coping them. It's just finding those ways but we can help you!

debbiedo49

Hello and welcome to the community . You will find help and advice and companionship here 

6point5

Postural Orthostatic Tachycardia Syndrome, is basically where your heart rate will beat so fast and this maybe because i have stood up or sat down ect, it causes me to blackout, i feel weak and dizzy, its so hard to explain but that is the easiest way for me to get it across.
I can not do anything which will make my heart race, so no funfairs/theme parks ect. Even watching telly, i can feel my heart racing. x

topshoes

Yes I know what you mean 6points5 and it is not nice , I have got hypertrophic cardiomyopathy 

Ami2301

God that sounds horrible! Does medication help?

topshoes

Can not give me any think to help , just a waiting game for me now lol

topshoes

Just waiting to see pip end of month with all the other things worng with me , but how are you doing any way with is it just one heart beat what Gos nuts

6point5

Ami2301 said:

God that sounds horrible! Does medication help?

I take so much mefication, 4 times a day, I'm on 8 co codamol , 4 tramadol, 3 pregabalin, and a new tablet to stop me having seizures twice a day. And I also take anti depressants to keep me sane x

6point5

topshoes said:

Just waiting to see pip end of month with all the other things worng with me , but how are you doing any way with is it just one heart beat what Gos nuts

What is wrong hun? I had to change from dla to pip, but it was a smooth process

Sam_Alumni

Welcome to the community @6point5

Richard_Scope

Welcome @6point5