Friday, 26 August 2016

One Year Follow-Up: Stanmore Pain Management and Rehabilitation Programme

Can you believe that it's been a year since I spent three weeks in rehab? Where has the time gone? I distinctly remember the nerves I felt the weeks leading up to the programme as if it was last month. The apprehension, the anticipation, the terror. I was terrified, I'll openly admit that; it was a massive step for me, for anyone that goes on the programme, but I wouldn't change it for the world.

My appointment was last Friday at 9:30; I'd already booked a hotel for the night before because I knew I wouldn't be able to drive there and back in one day. See, there's me putting pacing into action like I'd been taught during my three week stint. 

For three to four weeks prior to my appointment I'd been in and out of flare-up. I can't tell you why but I can tell you that I was so annoyed because I wanted to go back feeling good (or as well as I had been before the flare). Alas, chronic pain is a cruel mistress and doesn't play by my rules and certainly doesn't tell me the rules of the game. We arrived in Borehamwood the day before, and as the evening progressed so did my pain. I was in agony, like close-to-tears-agony, and I'm not a crier. I'm also one of these weirdo sleeping people that can never fall asleep somewhere new, so that and the combination of sheer torturous pain wasn't great. I probably slept for an hour at most. A migraine had kicked in, my pain levels were through the roof and I felt like I was going to throw up - what a lovely night away!?

Ian and I arrived at RNOH just after nine and despite wanting to walk on crutches into the ward, there was no parking spaces near enough, plus my pain was horrendous so powerchair was definitely the best bet. As soon as we went through the doors I bumped straight into two of the amazing women I was on the course with; Sibil, an 83 year old hilarious one-of-a-kind, and the gorgeous Zoe. We had a cuddle and a quick catch-up before we were ushered into the conservatory. Then my troublesome twin arrived and the giggles commenced. I hadn't seen Nat (troublesome twin) for ages and it was so good to see her, and my other bestie, her mum!

We had a group session about moving on and how to maintain change. Then the OT that led the group asked us all what motivated us to keep going. Nat turned to me right away and we knew Sibil's answer would be the best. When it got round to her I couldn't look at Natalie and she couldn't look at me because we'd have both burst out laughing. We both bloody idolise her but she never actually answers the questions, just goes off on a tangent, bless her.

Anyway, then we were all called individually. There's no guarantee any of us would see a therapist we saw on the programme but I was lucky enough to have Sally, my OT do my follow-up assessment. She told me both Sophie (my physio) and her had a little fight over who would see me and she won, which made me smile. We talked about what I'd been up to since my three month follow-up, and discussed my goals. I'd completed all my goals and smashed a few of them, so that was amazing, and Sally was really impressed. I told her all about working with Enhance the UK, Liability Magazine and Scope, about gaining my independence back with my powerchair, about going out on my own, about moving out, about pacing better, and writing a novel. I was so pumped telling her how much I'd accomplished since I last saw her in December, I didn't even realise how much I'd done until I was reliving it, with a lot of prompting from Ian because my memory is awful.

We didn't set new goals as my year follow-up was my final time at RNOH for the pain management programme. I said to Sally that I'd be setting goals for myself from now on anyway as I find them motivating and really beneficial. I find if I have something to work towards within a realistic time frame, it's helpful and makes me feel like I've achieved something. 

I was made up Sally did my follow-up because (she's awesome) she said how much I'd changed from the first time she saw me last year. I'm apparently a lot more positive, who knew? I had a great rapport with her and I could talk to her like she was a friend that was eager to help me succeed, and I had that with the whole team at Stanmore. That's what's so great about it, they really want to support you, they want you to have a better quality of life, and they're sincerely overjoyed when you go back and can see a difference. 

I thought I'd be scared that I wouldn't be going back. I thought I'd fall off the wagon (so to speak), relapse and not know what to do. I thought I wouldn't be able to do this without one of my therapists showing me the way. But I'm not, I have the skills to keep me on this road, and it's not a road to recovery or getting better, but a road of self-management, a road where I know if I take a wrong turn, I'll know exactly what to do, and I can't thank the pain management team enough. They definitely saved me and I'll be forever grateful. Especially to Sally, Jason and Sophie <3


  1. This is fantastic to read Sarah! I'm so pleased that you've been given the skills to best manage the ups & downs EDS brings with it. It's so nice that you go to see one of your therapists for your follow up, you can be very proud of all you've achieved in a year. Xx

    Tania | When Tania Talks

  2. This was a lovely read! It sounds like Stanmore's programme is amazing, and I'm happy for you that it's helped so much :) It's awesome to hear that you've completed all of the goals you'd set. Well done x

    Raiin Monkey


Related Posts Plugin for WordPress, Blogger...