As you know I'm disabled, (you can read more about Ehlers-Danlos Syndrome HERE and the other challenges I face HERE) and managing pain is vital for any Spoonie. 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 and I wasn't receptive. When I found out that one of the therapies was water-based, I initially began to panic and flat-out refused. I'll leave that story for another time but basically, I have a fear of water. Since, the programme required the patients to swim I was denied participation. Hence my 'almost' course.
- Three hours, one day a week, for six weeks, I attended a patient-based pain programme. This was probably about four years ago and it was really beneficial. I was taught coping strategies, such as meditation, positive thinking and controlled breathing which I still implement now. I met some really lovely people (I was the youngest, as usual) and I found that because the advisors suffered with chronic pain, they had a real empathy for us.
The referral was sent off and I did what any 21st century patient would do, I googled. Everything I found online was really positive and I knew the programme would be beneficial for me.
Early 2013 I received an appointment for Stanmore (it's in Middlesex by the way, down south) but I was studying for my Masters and I couldn't get time off. The Rehab Programme required three weeks as an inpatient but it wasn't the right time for me. I was more than willing to go to rehab (yes, funny) as soon as I'd handed in my mammoth dissertation.
Once I left uni I called Stanmore to discuss my options and they informed me that I'd need a new referral as it had been over a year.
I made an appointment with my GP, told her all about the programme and how I thought it'd help me manage my pain and she agreed. She sent a letter the same week. It was that easy.
That was at the end of 2013. I went for my first assessment in March 2015.
My Stanmore (RNOH) journey is going to be a series on my blog over the next few months as I want to share the process, the emotions I go through, the therapy I have, etc.
If you have any questions, please get in touch.