The problem with a condition like Ehlers Danlos is that sometimes I will go weeks or months without any major issues. That is of course if we’re not counting minor dislocations, nausea, vomiting and tiredness in our major issues list and ignoring the arthritic pain and assorted aches.
This means that I get to function relatively normally for a period of time. Yes, I puke of an evening and have to manage what I eat relatively well. I also dislocate my ribs/shoulder/wrists/ankles/fingers every day, but that isn’t a huge deal. They’re all relatively easy to reduce and while painful, I don’t scream over those. This is what relatively normally means to me, but we can work with this.
The major problems appear when I’ve been running on empty for a while. The holiday season is rough on me – rich food, family commitments, later nights, excitable children – these all conspire to use my energy faster than a week, say, in the middle of winter.
So when I had a positive pregnancy test, a hospital admission for Isaac, a wedding to organise and execute, a miscarriage and a few other unbloggable things happen within a fortnight, you might not be surprised to hear that I hit a brick wall sometime on Tuesday, as my reserves of any remaining energy disappeared and I found myself pretty unable to do anything normally.
You might not be surprised, but these crashes always take me a bit by surprise (apparently, I am more determined than smart sometimes and seem to think my body should run on willpower alone) and leave me grumpy at the whole situation.
After all, there is only so much you can accomplish when the ability to walk has just about deserted you and your children are running in circles and demanding feeding.
Thank god for Nathan, anyway.
I am trying to take it easy, but you know what? I’m just pissed off. I’m pissed off that I can’t eat right now without wanting to vomit, that I can’t walk, that I can’t move without feeling like someone three times my age, constantly keeping an eye on my joints to make sure nothing breaks.
I’m pissed off, knowing that getting my boob-to-knee support wear on would help – but that I know I wouldn’t be able to get it on in the first place, without dislocating at least one major joint. And I’m too scared to do that.
I’m just pissed.
I know that this will get better. My last big crash that felt like this involved me quitting my job and spending six weeks in bed and 12 months recovering (I was pregnant with Amy during that period, which didn’t help matters) before I felt like I had a decent control over my body again (insomuch as you can control vomiting and dislocations).
Today I have at least managed to sit semi-reclined and deal with emails and write this post (we’ll ignore the dislocared thumb joints near my wrist, I don’t type with my thumb anyway), but it’s a slow process.
I used a good deal of my energy resources today just having a shower, and suspect that my entire afternoon will be spend curled in a chair with my kindle, trying to work out if my hands are stable enough to hold a cup of tea. Yesterday they weren’t, but I’m hoping for progress.
And maybe, if I’m lucky, tomorrow will be better too.
I’m so sorry you have to deal with all of this.
I wish I could wish it away for you.
hoping with all my heart,tomorrow IS a better day.
many gentle hugs
**HUGS** Seriously I wish I could send you extra spoons that dont need to be taken from somewhere else. You concentrate on getting your health back up to Vee normal and I will give your mum a HUGE hug next week to pass on ok?
I try to send you a good day my dear. Bises and love! Grit
Not sure what to say really. I don’t know how you go about every single day all dislocated and the miscarriage on top of that. You’re stronger than you think.
Rest up miss Veronica. I can’t even begin to imagine how hard this is for you. Take care :O)
chronic illness sucks. i get fed up with mine (cfs) too, and my crashes also take me by surprise sometimes. it’s easy, in retrospect, to say “oh, i see, all those social engagements, errands, and extra stresses built up to this” but at the time you’re just living your life, and you can be forgiven for not always seeing things through the lens of your illness.
i hope you’re on an upswing again soon so you can enjoy the christmas period as much as posible.
meanwhile, i came across your blog via another mummy blog, and i’d like to add you to my blogroll. i like the way you write, and i think we’ve got a lot in common!
I am not surprised you crashed.
Take the time you need to really rest and truly recover as much as possible.
🙂
I don’t know what to say here. You do so much!
After reading this, I’m ashamed of the whinging I do when my knee is clicky and my feet won’t stop hurting, when I have to spend yet another afternoon with a hot water bottle against my back.
Because for me, these things don’t happen every day, not even every week. (except the feet, they hurt all the time)
Huge hugs. I hope tomorrow is better. Take care & rest as much as you can xx
Bastard EDS. You take a back seat for now and let Nathan do the work (ie kids, house, everything that you usually do) so you can rest up.
Sending lots of love, sweety. xxx
🙁 I’m so sorry
Thank god for Nathan as you say.
The surprise crash is a bitch. Logically you know it’ll come, but you can’t live your life waiting for it or dwelling on it, or you’d go nuts. You shove it into a little corner of your mind, chain it to the wall, and forget about it so you can get on with life. And then BAM it jumps up slaps you in the face leaving you saying WTF? And it sucks. Nothing I can say can make it better, it’s just a case of riding it out until you come back out the otherside to start the cycle again. I do hope for your sake that it is more short lived than others and that your body decides to get with the program quicker than usual. You’ve had (too borrow a phrase from the magnificent Kelley) a metric shit tonne of crap on your plate, take this time to bitch and moan and swear at the moon, because frankly you’re entitled. Plus I find swearing like a sailor quite cathartic during these times. (gentle hugs and love).
I’ve been lurking for awhile. A speaker at the last EDS conference in Baltimore, MD recommended your blog and I have enjoyed reading it. I am older (57) and raised four kids not knowing I had EDS, but I knew something was not right. As I read your blog, I am taken back to those difficult days of having small children at home and feeling like I will never survive motherhood. I survived and went on to earn a Master’s Degree and teach for 20 years before EDS stopped me in my tracks at age 52. I wish I could reach out and help you like I try to help my children (who have EDS) with their children (my grandchildren). I know it doesn’t help to say “hang in there,” but savor your good days and on bad days give yourself permission to lie down as much as you can, only do absolutely necessary chores and the kids can watch videos on those days – they will be OK. The thing with EDS is that when you overdo today, that means you are using tomorrow’s energy. It’s important to try to keep it all in balance. I know, easier said than done. Just know that even though I can’t help you, I’m out here saying, “I understand, just do the best you can and that will be good enough.”
I hope this day is a good day for you! Take your time and don’t worrry for the children now, later, you wil recover your force ! Bises Grit !
you poor guys..
although we haven’t met, your words show me you are a strong person. And although I really dont have any place in giving advice, I want to at least recommend distracting yourself with things as much as possible.
I understand what losing a baby is like. I am sorry for what you’ve been through. all the best.
ps. i mentioned you in my recent post as a great writer, just fyi 😉
– tork
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