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Rehab: Brutal as well as brilliant

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And in a flash, but also a lifetime, it ends. I’d been trying to write another blog post over the course of Week 3, but a flare-up and a lot of demons to work through meant that it has taken me much longer to put this into something publishable. I can’t manage 100% honesty about the difficulties that I have had during the programme. (I probably won’t even manage 50% - there is only so much that I can face saying in the public sphere.) I’m going to pick a few of the main things that have been a struggle for me, and save further reflections for another weekend. It turns out that, in my first two posts, I did a good job of pointing out all the positives of the inpatient rehab programme at RNOH Stanmore, but that I rather swept the more challenging aspects under my nice adjustable hospital bed. In the interests of full disclosure, and given that I am trying to paint a realistic picture of the demands of Wonky Bootcamp, I suppose it would be wrong to avoid reflecting on my harder days ...
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And that was Week 2

As I headed back from Wonky Bootcamp at the end of week 2, my mind was full of everything that we had done. I could feel that we had worked hard, with my body grumbling at me all over, but I also watched my WhatsApp go wild with messages of support and kindness from our group. I hadn’t even been gone an hour! There is something about the friendships that we have made on the ward that can’t quite be quantified. We are all very different people but, as chronic illness or injury warriors, we are all fighting through similar battles in our lives. It genuinely is ok not to be ok - whether you need a hug, or a cry, or to be left alone for some peace and quiet. You’re allowed to say that you hurt, or that you’re tired, and you know that the others understand the depths that such words so insufficiently convey in other situations.  The “shoulder crew”, who have been going through a two week rehab to improve their function after upper-limb injuries, had finished their programme. While ...
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The new decade: Week One

In the last few days of 2019, my social media was flooded with reflections on the finishing decade. Having spent the last two and a half years in a bit of a struggle, my own reflections were a bit mixed. I have gained two totally awesome boys, a husband who has survived over a decade with me, a lovely home, and a job I love. But I also gained, and then lost, a job and a home (and an identity) that I adored, thanks to a genetic condition that I knew nothing about. Swings and roundabouts, eh?! I did manage to do #NoNew19 with only a pair of new pjs and a 50% reduced new concert dress, but that was more by not buying anything for myself than by finding alternative methods of shopping. I think I’ll save that particular reflection for another day, though I don’t think I’ll be chalking it up to a major achievement... Anyway, I started the new decade with mixed thoughts, but really wanted to focus on a positive. Enter my admission to the inpatient rehabilitation course at the RNOH at Sta...
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New school year, new challenges

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I used to like inset days - a good way to get your head in gear for the term ahead. But this year, the two days just gone were about surviving, and for that I lay on the floor at the back of the hall (thank you yoga mat), stood up in the middle of a meeting because I couldn’t sit any more, and hid in my office, stretched out on the sofa, heat pad on full blast, just trying to conserve enough spoons to make it through the day. “Come on body, pull yourself together,” I say (haha, jokes... silly lax collagen). Actually, of course, I don’t give always give it a chance - going to the staff meal yesterday evening, for example, was not my best idea - but our school is such a lovely community that I’m so loathe to miss out on those fun bits, even if having fun isn’t always fun afterwards! I made it, though. I went to every meeting I was supposed to. Yes, I had to sacrifice lunch on day 2 because I was too exhausted and it had been such a mistake on day 1. Yes, I didn’t take in every word...
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Six months on: 'Bloom where you're planted'

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Putting oneself out in the blogosphere turns out to be harder than it first appears. I hadn’t appreciated the extent that it would push my anxiety buttons, or my perfectionist tendencies, and I haven’t felt that any of my thoughts or experiences were going to be of interest or use to anyone. Who wants to read that, when you have EDS, having fun isn’t always fun? Or that attending an annual events for the first time since my body waged war on itself brings out all sorts of insecurities? How about navigating gut, bladder, hormone, skin, and allergy problems (because yes, they’re all linked to the big fat package of joy you get with faulty collagen)? I could even write about my old friend insomnia (often christened painsomnia)? Would I feel better? Would it help? No, I don’t think so. I could write about the guilt of a mother who can’t take her sons to all the usual summer holiday haunts because there’s just too much walking. That, if I swallowed my pride and just bought a mobility...
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Chronically Parenting

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After a week where my anxiety has made even the simplest of tasks into a mountain, and my pain and exhaustion have been hard to control, I have dreamt up a multitude of negative self-flagellating posts. I wouldn’t say that I am particularly hard on myself, but more that I have a fervent desire to maintain certain standards, and this sensibility goes directly against the very heart of pacing, and, though I am yet to embrace it, against self-compassion. I am - therefore - constantly disappointed by my limitations, particularly with regards to parenting our two boys.  I could focus on the fact that I cannot get up in the mornings in time to be of any use. My darling husband does not complain at me - he know that it isn’t my choice, and it isn’t laziness - but I wish that it were a bit easier to get going so that I can support him. I could also focus on the evening routine, with meal preparation and bathtime a significant struggle, not to mention my utter inability to contribute t...
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Pain

Pain. You make me choose today or tomorrow.  Pain. To function tomorrow, today I must pace  each step,  each stair,  each standing moment. Pain.  You make me choose my job or my family.  Say no to my big boy  as he struggles with a new piece  or holds his bow wrong  or just wants to find the right piece of Lego.  Say no to my little boy who misses being carried who has lost his favourite helicopter  who just wants to play a game.  Fail to send a birthday card Fail to do the dishes Fail to be grateful for the sunshine Fail to enjoy small boy moments  when they deserve so much more  when it will make their day  when it may have made mine But would certainly break my tomorrow.
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