I’m Really Flexible and it’s NOT Sexy

I have Ehlers-Danlos Syndrome type 3; the hypermobility kind, the stupidly bendy ‘how don’t you snap?’ one. Some people will probably call the majority of us with EDS 3 – double-jointed, but that’s a myth, I mean, how can you have double the amount of joints? I’ve written quite a few posts on EDS, and…

Proprioception and Ehlers-Danlos Syndrome

When I was diagnosed with EDS type 3, (hypermobility, HEDS, whatever you want to call it) ten years ago I was naive enough to think that Ehlers-Danlos would be the strangest words I’d hear regarding my condition. Alas, my nineteen year old self soon learned a lot more; proprioception being one.What is proprioception?Basically, proprioception is…

30 Things About My Invisible Illness You May Not Know

It’s nearing the end of Invisible Illness Awareness Week 2015 and when I saw that Rachel over at Happy Little Syllables had posted this meme about living with an invisible illness, I had to share my story too. Invisible Illness Awareness week started on the 28th September and ends October 4th.Many of you know that…

Spoonie Struggle: Explaining my Disability to Others

How do you do it? How do you tell someone that you’re disabled? Is it as easy as just blurting it out?Do you not bother?Do you go into detail? I used to avoid it, I never said I was disabled, I didn’t identify as a disabled person; I was (and am) disabled but if I…

It’s Almost Time: Stanmore Pain Management and Rehabilitation Programme, Part Five

I can’t quite believe how fast this has come around. Three more sleeps and I’m off into hospital for my three week in-patient stay for Pain Management. I’m so anxious just writing this. It’s such a good job that I booked a hotel for the night before because I know on Monday morning the last…

I’ve Got a Date: Stanmore Pain Management and Rehabilitation Programme, Part Four

My in-patient date for Stanmore, RNOH, came and I felt sick as soon as I opened the letter. My initial thought – ‘I don’t want to go’, my stomach churned and anxiety kicked in. It was real now, I was actually going into hospital for three weeks. THREE WEEKS! The admission date is August 3rd, if…

Pre-Assessment Time: Stanmore Pain Management and Rehabilitation Programme, Part Three

The day of my appointment finally came, my anxiety was through the roof, I was in a lot of pain and a bad mood. I’m usually in a bad mood when I have a hospital appointment but this was worse as I knew I’d be there for up to two hours and this was the…

The Consultation: Stanmore Pain Management and Rehabilitation Programme, Part Two

I was really nervous; sick to the stomach nervous. I know the pain management programme is a three week in-patient stay and I’m not okay with that. I’d been trying to convince myself not to go but deep down, I knew it was the best thing for me. My boyfriend came to the appointment with…

The Referral: Stanmore Pain Management and Rehabilitation Programme, Part One

As you know I’m disabled, and managing pain is vital. I’ve (almost) been on two Pain Management courses in the past. I was 18, I hadn’t been diagnosed with anything, I was terrified. The Pain Management course was an inpatient stay in a Liverpool hospital for six weeks. I was surrounded by much older people…

A Day in the Life: Living with EDS

   My day usually starts in the early hours of the morning, not because I wake up early, but because I don’t sleep. I go through phases were I sleep for eight hours plus for a week but drop off around 2am and then 2-4 weeks of insomnia/painsomnia. My nights consist of lying in…