| Day One | I had a very early start and didn’t sleep well. I Skyped my best friends and boyfriend last night for some last minute encouragement. My bags were brought in from the car by one of the nurses so I didn’t have to struggle and I was shown to my bed. My…
Category: disabled
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…
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…
Why You’ll Never see an #OOTD from Me: Pyjama Life
If being in my pyjamas all day is wrong, I don’t want to be right! As a Spoonie, I spend a lot of time in the house or in bed and I want to be comfortable; what’s more comfortable than PJ’s? I don’t see the point in getting dressed if I’m not intending on leaving the house…
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…
Life Update: We Moved
I’ve lived with my boyfriend for over a year. We lived with my parents in a town just outside of Liverpool but recently moved to Northants. It’s a three hour drive away but it’s where my boyfriend is originally from and all of his family live here. It’s a massive change, we live in a…
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…