Welcome to my blog :)

Hi, as you can see my name is Rebecca and im 24 years old.

I wasn't diagnosed with Ehlers-Danlos Syndrome officially until the 14th of January 2015, 2 days after my 24th birthday but it has been very evident all of my life and more so the past 6-7 years.
The journey to diagnosis is a very long one and it can be very stressful and a very lonely time but there is hope. I saw a wonderful Geneticists from the Nottingham Trent University Hospital, he helped me put all of my life into perspective. He explained that unfortunately I am one of the most severe cases as I present almost all of the possible symptoms of EDS but he says that he believes I am also a strong person, i would like to think so!

I have been diagnosed with:
Ehlers-Danlos Hypermobility Type
P.O.T.S
Fibromyalgia
Gastroparesis
IBS
Borderline Personality Disorder
Chronic Migraines
Photophobia, Osmophobia and Phonophobia
And all the comorbities that go along with these conditions.

I try to be a positive person. I believe there is always some good in the bad and that everyday is another day worth living.

My current situation:
I came out of hospital yesterday after a week of chronic upper abdominal pain and unable to keep food and liquids down. I dont really remember much of this last week as i was either being aggressively sick, asleep or passing out. I stayed home for as long as possible and it wasnt until 2 days ago i went into hospital when i was bringing up my stomach lining and unable to hold my own head up. It turned out that my blood sugars were only 2.4 and i was severley dehydrated so i was admitted. The doctors believe that this is due to the Gastroparesis, which is very common in people with EDS. I have since been aloud to come home and i am coping. I have to return in the near future for a endoscopy and further tests.

I seem to spend alot of my time in hospital. Most weeks I will have up to 6 appointments in a week. Theses consist of Physiotherapy, Occupational Therapy, Hydrotherapy, Orthopeadic Surgeons, Fracure Clinic (i have alot of falls), Opthamology, Cardiology, Orthotics, Rheumatology and many more.

At the minute I use Smart Crutches to get around, I cant walk very far due to chronic pain in all of my joints. At the beginning of the year I was using a self propelled wheelchair but as my joints have become even more lax this is no longer possible as it causes my wrists and shoulders to dislocate. I was assessed by wheelchair services and they have now come to the decision, along with doctors input that I now need to use an electric wheelchair. This was heartbreaking for me as I feel like my mobility is being taken away from me but I wont let it get me down. The property that I am in is not big enough for the wheelchair I will need so now I also have to move to an adapted bungalow.

Like alot of people with EDS I experience a lot of Dislocaions and Subluxations (partial dislocations) and this can be anywhere up to 15 times a day. It is possible for any of my joints to dislocate from my little toe, to my hip or my rib cage. There is no cure for EDS, but there are things that can be done to make each day that little bit more manageable.

Because I don't really get out much I love to keep myself occupied at home when I can.
Here are some of the things I love to do:
Reading - this is definitely one of my favourite things to do and im always welcome to new book suggestions.
Colouring - I find this very therapeutic.
Arts and Crafts - I love to try new things.
And hopefully blogging will now be a new favourite.

Im not sure what else to say so I hope you enjoy my blog and il will be back soon!!