Six months on: 'Bloom where you're planted'


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 scooter, we would have more flexibility and freedom. Shopmobility schemes are great - thank you Sainsbury’s, IKEA, and the two main shopping centres in Cambridge - and have given me a taste for the effort that it can save. I wish I didn’t struggle so much with sitting, and with my hips - if I could self-propel a manual wheelchair (which somehow feels so much less pathetic or embarrassing) I’d have got one months ago. We don’t, however, get on.

I am waiting for my referral to wheelchair services to make some - any - sort of headway so that I can see if they will give me any sort of voucher to help with a purchase, but nothing is happening. My sole focus is on improving my freedom - our family’s freedom - not on taking over my walking. I know only too well (from the few days that I have had to spend entirely in bed thanks to migraines or other acute illnesses) that my body needs regular (gentle) movement. But too much of that, especially once term starts and I am working full time, and things can quickly get out of hand. I may have to ask for an early Christmas present to get through the long Michaelmas term. It’s certainly expensive to live with chronic illness.

So how about I take a different approach? I’ll write about a positive little something that has come out of this whole debacle. I thought about focusing on our house, which we have now owned for four months and, even with all its faults, is the best family home that we could have hoped for. It could be time with the boys, that oh-so-precious a commodity, which was hard to come by when I was juggling a boarding house and an academic department. Except the amount of quiet rest time I need probably negates the other gains. So I shall settle on reporting my dabblings in embroidery, a skill still in its infancy, but which has brought a mindful focus - and a more fulfilling mode of distraction - to working through certain levels of pain.

I bought a few kits where the pattern was pre-printed on the fabric, and was able to sew something really personal for my Mum’s big birthday. Thanks to an idea I saw on Pinterest, I even wrapped the hoop with leftover cotton to bring it all together.

I’ve made something for myself, which will go on the wall in my new study that my darling husband is creating for me. The wording on it, 'Bloom where you're planted', represents my new-found embroidery hobby, and was therefore the perfect sentiment to attach myself to. A lot of positive statements that people bandy around are empty, or even toxic, to anyone with long term health problems. The quiet acceptance that this phrase encourages is much more gentle, while still promoting self-compassion and a focus on positive sentiments. It is a concept in which I see much merit, and which I am trying to welcome as I navigate the choppy waters of rehabilitation. Perhaps it even links to embracing the benefits of having a mobility scooter (especially if I can get it in green), even if I do have to buy it myself.

Now I am working on a little piece that has the boys fascinated, and may well end up in their playroom, for which a small sneak preview can be seen.

Given that I can’t draw, or paint, or knit, or use a sewing machine, it is nice to practice and cultivate a skill that means I can make gifts for those I love, but doesn’t aggravate my body further if I am careful. I don’t think I’d have taken this hobby up if I was still rushing around at a hundred miles an hour, and will therefore take a moment to be thankful for my new creative outlet.

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