One very important thing this illness has taught me is to create flexible plans and be realistic about what my body can handle. Change can be uncomfortable at first but adapting fast enough is what helps us reduce our suffering. Yes, we need to make plans, have a sense of direction and accomplishment, but we can’t allow ourselves to feel guilty or as if aren’t good enough in case we can’t keep up entirely. Remember, it’s never because we’re incapable (or lazy), it’s only because our body is different and we work on limited number of spoons.
In order to continue moving forward, we need to figure out a pace that’s manageable for us (for us!) and remember to focus our energy on what we can do instead of what we can’t. It’s okay if our plans need to change to suit our ever-changing body. That’s part of living with a rare,chronic illness, isn’t it?Keep making changes to your lifestyle and make choices that honour your body. Accept limitations and work with possibilities.Be open to new opportunities it can bring, make flexible plans (instead of stretching your hyperflexible body) and continue to work on small and achievable goals.
And please,do not ever give up on your dreams.
There’s something about November-December that always throws me off balance and drives me insaneeee! It has to be the Fall season, I bet. Alright alright, there’s no Fall out here but I’ve seen how my brain goes for a complete toss around this time.
It’s like my mind decides to have a mind of its own. This is also a period when my body gets more sensitive to slight changes in temperature. It’s one sick mess.
Well, let’s not completely blame my mind for this. That won’t be fair. Last month has been extra twisty-turny in terms of things happening around me and though I am aware I can only do so much about it, the situation sometimes really makes you think about what’s worth it and what’s not.
To be honest, it’s been five months since I probably felt my best. And because I’ve know what my personal “best” can feel like, I’m always trying to get back there one step at a time. That hasn’t been working because something pops up and there’s a sudden pause to everything! I’ve worked hard to be able to do so much that I’m capable of right now, and I do not want to do anything (anything AT ALL) that could possibly jeopardize any of the progress I’ve made. I’ve looked after my body’s needs very carefully and that’s what has helped.
A lot of times we need to look after other aspects of our health in order for our physical body to catch up. Frankly, looking after my body’s needs has allowed me to understand my, personal, deeper needs too. Ones which were pretty much muddled up for a very very very long time now. Considering the number of years that it took for my health to start deteriorating and my body to feel its effect, I’ve got a long way to go for the healing to take place – on all levels. Expecting this process to be faster or trying to rush this process is in fact only delaying it. I’m working on it and I’m going to continue to.
SO. In my attempt (yet another attempt! Wait, what else can you do right? You keep trying!) to get find that balance again….
This week I’ve managed to –
1. Cook my own meals!
2. Get back to 20-25 minutes of walking a day (survived 2km today!)
3. Make space for my quiet time
4. Start doing my usual oil massage more religiously
In terms of work, there’s so much more to consider than where it all began. I’m expecting some sort of a change soon – still weighing out options and coming to terms with the fact that sometimes you just have to take a leap of faith. I might just become an expert in taking leaps of faith. I don’t think that would hurt much because perhaps that’s better than being stuck; especially for the kind of support and guidance that comes along ONCE you muster the courage and let go.
Over the past 6 years of living with Elhers-Dalnos (3 before diagnosis and 3 after), I’ve seen how some items are of such great importance to me – almost as if they are real people who belong in my support system.
I might sound silly, but I absolutely love my ice packs, hot packs, all my ointments and rubs, every essential oil that I have, all the tablets that help me function, all the supplements, my tapes and guards, braces and slings, the mattress that I can’t sleep without, all the extra pillows that take the rest of my bed up, my foam rollers and spiked massage balls, hydrotherapy essentials and so on just to name a few. They have each played an integral role in helping me make friends with my body and learning to manage this illness to the best of my ability. I’m very grateful to have them- they make up a different sort of Medical Team for me. At least that’s how I look at it.
To suddenly find that 3 out of 4 of my hot bags are now leaking and can’t be used, was a complete nightmare. I thought it was bad enough and I wake up to 1 out of 4 of my ice packs punctured as well. All the gooey blue stuff oozing out of it. Yes, true – I’ve got 1 hot bag and 3 ice packs left, but I’ve also got 9 joints that need to be looked after, so these little angels make a huge difference.
Do I sound like a spoilt brat? I hope not. The truth is, when all the 9 joints scream all at once, so loud that you want to scream too, and you get fever from the inflammation and gastric pain and cramps, your muscles are so tight they feel like rock and even the strongest of the medicines don’t work…… It’s one hell of a difficult situation.
As in update, my lower back is as bad as it was when I first realized that I’ve got another slipped disc – this was in early July. I’m dreading even getting off bed and being in bed too long is as painful. Standing hurts too much and walking isn’t any better.
Extra care time starts now.