Month: April 2016

Stanmore: Pain Management Rehabilitation Programme Day 2

Woke up just before my 7:55am alarm went off this morning, which is rare. So I watched some morning news and waited for my breakfast to arrive at my door. Unfortunately the breakfast was disappointing, so I’ll make my way to the restaurant for breakfast tomorrow, even though I’m phobic about buffet food. I can have as much as I want when it’s buffet – I had 4 mini croissants and a big bowl of plain yoghurt – no granola as they’d run out and you can’t eat plain yoghurt on its own, it’s hideous!

So after breakfast it was time for a ‘Your Move’ session which was a basic relaxation/stretch class – lasted about 15 minutes then I went onto my first Physiotherapy session. The Physio was lovely, and really listened to my issues and goals. She sorted out some things I can do to improve my back pain and ward off so many muscle spasms. Then she said I was strong and had a great sense of body awareness – so my aim to get pilates and yoga back into my routine regularly is definitely doable, which is great.

Then we moved onto Occupational Therapy and we worked out some areas we could improve; longevity of shopping trips, my ability to do more chores around the house and work on my hands and grip.

Then came Psychology, which was weird. I got upset because of the vulnerability I felt talking to a complete stranger and it was an odd sensation. I thought it would be more to do with how I feel about living with a chronic illness, but it was more to do with being bullied as a teenager and how I see myself now. Which is great, but not what I’d expected to be delving into (especially with such a limited time frame… I’m a complicated woman and 3 sessions of psychology ain’t gonna do much!).

After lunch (which is cleverly made so that none of it can be squirreled away to our rooms for later – it was all salad, ham, chips and pasta) we had a session about the physiology of pain. I found this particularly boring, mostly because having been diagnosed with EDS for over 10 years, I know enough about pain to not need a lesson about it. I’ve read up about pain plenty of times and it just felt like they were teaching a granny to suck eggs, in a way.

I think that’s what Andy (the lead Psychologist on the programme) meant about my being a breath of fresh air in terms of being a chronic illness ‘sufferer’ – I don’t ‘suffer’ with anything; I have a chronic illness, I am not my chronic illness. So the sessions here seem to be catered to the more ‘Fibro minded’ people who tend to let their pain take over and therefore need to be taught how to change their relationship with pain. I am confident in myself and my illness to not feel like I have an unhealthy relationship with my chronic illness or pain.

Unfortunately this afternoon the jacuzzi wasn’t working so we were left with either swimming in the COLD (we have connective tissue disorders damnit, we need warm water!!!) pool or using the sauna – neither of which we felt like doing so we sat and relaxed for a bit before the children piled in the pool.

Anyway, I’m utterly knackered so I’m going to leave it there. My fella’s coming to visit me in the hotel tonight, so we’re eating dinner in the restaurant here. I can’t wait to see him, I feel like I’m a million miles away from him! (In essence he’s more like 40 miles away!)


Stanmore Pain Management Rehabilitation Programme: Day 1

I don’t know if I’ll be writing a blog for every day of the 15 day programme, (split over 3 weeks) but here’s the first day…

I arrived promptly at the hotel for the hotel-based pain management rehabilitation programme run by the lovely team at Stanmore (Royal National Orthopaedic Hospital) at 9am and was checked in swiftly. I made my way (miiiiiiles away from reception) to the back of the hotel on the ground floor where the ‘accessible’ rooms are kept. I am just outside the conference rooms, gym and swimming pool, so I’m dead chuffed about that.

Unfortunately I’m not very good at eating in crowds of people, so I am having my breakfast and dinner in my room and then joining the group for lunch every day so I can keep my social anxiety at a manageable level. I’ve suffered with ‘buffet phobia’ since my late teens; I’m sure I’m not alone in that.

The day started with an introduction to the Psychology sessions, which seemed pretty basic. A physiotherapist took us through an introduction to Pacing; a technique I’m not very good at, but hope to improve!

After the pacing talk and lunch, we split up and did our own thing. I had my first physio/occupational therapy session which was just going through the forms I’d filled in during the assessment process.

My programme finished at around 3 today, so I’ve spent the rest of the day in my room, watching Sex and the City and Game of Thrones. I have another short day tomorrow (starting at 9am, yuck!!!) so I think I’ll go and investigate the spa; the swimming pool, sauna, hot tub etc in the late afternoon.

One thing I would suggest is if anyone is being brought here by family or friends (and so don’t have any transport) they bring some drinks and snacks with them for their room. There’s a lot of down time and if like most of the group, you struggle with mobility, you’ll struggle to find a shop within walking distance of the hotel, so you’re really at the mercy of the room service charges. I’ll definitely be bringing healthy drinks and snacks with me for the 2nd week!!


Back in the saddle

It’s been weeks since my last post and I feel like I’ve been really neglectful of this place recently! It’s time to change that. I WILL start writing regularly again, I promise.

Anyway, a lot has happened since I wrote last – I was accepted onto the residential Pain Management Course at Stanmore for three weeks, starting later this month. I’m hugely relieved to have been accepted but now I’m absolutely bricking it too! I’ll be blogging about my time at Stanmore because I know when I was applying for it, I could’ve done with as many people’s experiences as possible, so hopefully this will shed some light for others yet to attend the course (or who are applying!). Watch this space.

I’ve written before about my love of travel and I’ve just returned from a 6 day European City trip – my partner and I visited Paris, Prague and Budapest and spent 2 days in each city. I’m still feeling shattered since coming home nearly a week ago, so I shan’t be going off on any more jaunts for a while. I’ll write a separate post about our European adventure another day when my hands aren’t seizing up; I got some great photos to show you all.

If you’re into vintage fashion, have a look at Vintage Life Magazine this month – you’ll see a rather large picture of my face!


Feeling tired, so I shall bid you adieu for now!