Spreading Awareness & Helping Others with EDS & POTS
Nothing is so painful to the human mind as a great and sudden change.
-Mary Shelley
Change usually ends up being a positive thing, after all, I always say that everything happens for a reason. But as I started talking about the last 12 months of my life in my year follow up appointment from the RNOH pain management rehab programme, the pain of the great and sudden change of the last few months hit me like a double-decker bus.
I don’t know why this wave of emotion was so unexpected. If you’re anything like me, change will mostly fill you with fear. Some of this fear is reasonable, but mostly it’s proven to be totally pointless. For example, I was terrified to go back to university after having been away from it for almost 2 years, living & working with new people who had no idea about my conditions. Of course, my pal anxiety was proven completely wrong and I’ve had 2 of the best years of my life with the very people who terrified me before I’d even met them. So why now, as I have to reflect on some of the more difficult stuff from the last year, does it bring back the same dread about what’s to come?
Plus this isn’t even the first time this week I’ve broken down in tears to a health professional I’ve never met before. On Wednesday, I went to a Neurology Clinic only to have the Occupational Therapist tell me how high my pain and anxiety levels were from the forms they’d given me to fill in. She was lovely and has booked me in to see her in a few months. I wasn’t worried about that, thinking I might get some problem-solving help from today’s appointment, but that wasn’t the case, and now I wish these appointments were sooner.
The realisation that I’m not going back to Norwich has hit me hard. I’d finally built up a beautiful safe, supportive environment which I called home and suddenly it’s all gone. With what’s felt like barely anytime to process that strange sense of loss. Of course, my friends are still amazing, but it’s so much harder when they are dotted around the country and the world. So I think that being discharged from rehab today was another blow to my ongoing support, even if the door isn’t firmly closed.
So now I’m on my own to find the changes I need for my health and for myself. I have to make change, within the change. A messy situation. Making change is fairly easy, especially when I was in rehab. For 3 weeks, away from work, in a nice hotel with maids and cooks and a team of health professionals, it’s quite easy to focus on all the things you can do to manage your pain. This is not to say that the programme was easy; I had my fair share of flares but at least you didn’t have to think about writing an essay or cooking dinner afterward. So the first 3 steps of change are achieved pretty quickly: Contemplation (i.e ‘I think I’ll take up running’), Preparation (i.e Planning on a day and time to run) and Action (going for a run).
It’s maintaining change (which feels like an oxymoron to me) that’s difficult. I’ve had so many lapses in the positive changes I made; mostly through stress and the competing demands of life in the ‘real world’. I kept my gym and eating goals up for a good month or so then it was back to uni and a very stressful first semester of third year and, BAM, it was suddenly February before I managed to get back on the wagon. Chest infections, flare-ups and Easter break and, before I knew it, another 2 months out of the gym. 6 more weeks of my amazing class in Norwich and then it’s another 2 months which have disappeared in a blur and I’m back home, having barely unpacked, with a much smaller support system, starting from scratch again. I spent last night in screaming agony as the muscles in my legs are confused by a few supported squats which my old trainer would be so disappointed in. But this is where we have to start again. You can’t go in expecting to be right back where you were, you have to go back to baselines and not get frustrated at what we perceive as backwards steps. Maintaining change takes motivation, whether that’s through goals or rewards or the support from/ accountability to friends, family and followers. Having set goals on my new gym app and getting my boyfriend to take me to the gym on the way to work means I can’t get away with staying in bed. It’s not easy to make change but we’ve done it before, so we know that, even if it takes times, we can do it again.
And having finally calmed down after the neverending waterfall of tears (mostly because I’d called my mum), I realised that although I might not have achieved the goals I’d set 3 weeks before a major crisis point in my degree, I have made progress. And I strive for progress, not perfection. I’ve recognised things earlier and taken a back seat when I can. I’m pacing better, exercising much more and trying to communicate better, educate, advocate and be assertive. So, the moral of my story is, It’s okay to feel overwhelmed and scared when things are changing around you, but you’ve also probably made way more positive change than you think.
Onwards <3
Be the change that you wish to see in the world
-Mahatma Gandhi
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What a great quote: “And I strive for progress, not perfection.”
I’m in the middle of a flare and really appreciated the positive perspective of this post!
Thank you Cassie. Definitely a quote I try and live by. Hope your flare calms down soon! Spoons & Love xxx
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