‘They tried to make me go to rehab’…and I went. I’m on my fourth week home from spending three weeks in Stanmore, on the amazing, life-changing Pain Management Programme. I intend on writing more in-depth posts about various things I learnt during my time in hospital but thought I’d give you a little inside scoop of what…
Category: Ehlers-Danlos Syndrome
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…
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…