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…
Category: chronic condition
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…
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…
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…