A Day In The Life: Ehlers-Danlos Syndrome

This week it’s Hypermobility Syndromes Awareness Week #HMSAware and obviously it’s really important to me as I have Ehlers-Danlos Syndrome Type 3. What many people don’t realise is that the HMSA (a bloody amazing charity) take all hypermobility syndromes into account, not just EDS, and it’s vital that the other hypermobility syndromes get enough attention…

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…

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…

21 Things a Spoonie Doesn’t Want to Hear

1. But you don’t look sick, you look great.– What exactly does ‘sick’ look like? I didn’t realise I was doing it wrong.– I left my ‘Chronically Disabled’ banner at home, sorry.– You didn’t see me throwing up all morning and then crying when I tried to lift my leg so my partner/family member/carer/friend could…

Biggest Achievement: University and a Chronic Condition

I graduated with a BA (Hons) English in 2012 and then a MA English in 2013; they will forever be up there with my biggest accomplishments. Above is my favourite picture from my Masters graduation with my boyfriend; why are the most ridiculous photos always the best? I went to Edge Hill University, started at…

May Awareness Month: Ehlers-Danlos Syndrome

I have Ehlers-Danlos Syndrome. May is Ehlers-Danlos Syndrome Awareness month. Have you ever heard of EDS? EDS is caused by faulty collagen, it’s genetic, I was born with it. There are several different types, some much rarer and severe than others. I have type III, more commonly known as the hypermobility type; I’m very bendy, have…