I started this year with all the good intentions of posting regularly on the blog. Keeping to a schedule. We’re not even out of the first month and I failed. I thought I would tell you a little bit about the why.
On my “About Me” page and my Twitter profile, I say I have Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. I talk about what I’m doing to counter the effects of these by attending acupuncture, but I’m not sure I’ve ever really said what it is I live with, and why, at times, I may dip in and out of the blog. This isn’t meant as a poor me post, it’s simply meant to be in line with being honest and explaining what has been happening lately.
Ehlers Danlos syndrome is a connective tissue disorder that means my body doesn’t make collagen properly. Collagen is what keeps us together, it’s a building block of the body. It affects everything. For me, it means I’m a little bit more flexible than you may be. I suffer with migraines, chronic insomnia, fatigue and pain. Everywhere. I suffer constantly with my hips and this past two weeks, I have had a lot of pain in my back, in the area of my spine that joins up with my pelvis. I thought having hip pain was bad, but it was nothing compared to the pain in my back. It radiates out with a sickening persistence. It overwhelms. It’s why I haven’t been blogging. It’s nauseating, but it’s also mind numbing with it’s perseverance. I’m popping my painkillers with a begrudging regularity, and they in turn effect output capability.
I refuse to lie down and give in to both of these conditions. It would be incredibly easy to do. On my days off work, I’m quite guilty of doing just that. But generally, I don’t. I won’t do it on a permanent basis. I actually want to enjoy my life, I still have aspirations and intend to attempt to achieve them. What it means living with two completely invisible illnesses is that if you see me in the day job, you’d never guess there was anything wrong. I’m alert, active, rushed off my feet, generally happy and part of a team. I put everything into it. But when I get home, it’s a different story. It has taken everything I have to keep that level of energy going through the day and I have no energy reserves left. My work/life balance is completely off balance now. As I’m aging, it’s becoming more of a problem.
Writing gives me hope though. I don’t need to get up at the crack of dawn to work on it, the stories just tick away in my head. I don’t need to be punctual or energetic. I don’t even need to get dressed! Writing and creating makes me feel alive, more so than my decrepit old body generally allows.
Today I’m fighting a low mood which I know is caused by fatigue. But underneath, I can feel the undercurrent of a quiet determination. There’s no choice really, but it needs to be on my terms.
Alex J. Cavanaugh says
Rebecca, what a great attitude! I had no idea what you endured. Keep fighting – life is worth enjoying and living to the fullest.
Rebecca Bradley says
Thanks Alex. I intend to keep fighting. The days and weeks that are harder, are the ones you find me here moaning 🙂
Margot Kinberg says
Rebecca – I give you a lot of credit for keeping your focus on your goals instead of pitying yourself. Pain can truly be debilitating and I respect the fact that you don’t let it take over more than it has to do. And I’m very glad you are still tapping that wonderful resource that is your imagination. You can record your thoughts when you need to rest and write them when you have the strength. That’s a great way to share what you have to offer. Good on you {{Hugs}}
Rebecca Bradley says
Thank you Margot. It’s not easy, but I don’t want the easy option of giving my mind as well as my body to this. I’ll fight it out. Some times slower than others 🙂
Effie says
I know. Something will inevitably have to give, like it did for me, but your attitude will make it all right. It will. I can’t bear to give into EDS and it’s so different for all of us. The thing that’s the same is that nobody sees it. Even the people you live with don’t always see it and naturally don’t have an endless supply of patience. Like you, I go to work, put on a face and a front. At home it’s very different. But still the stories tick inside my head.
I’m juggling with you and when a ball drops, if you can’t bend down to pick it up, I’ll do it for you. And I’m sure you’ll do the same for me.
Good luck with it all. xx
Rebecca Bradley says
I would definitely pick your ball up for you Effie as you would for me. The work this is more of a drain daily, but I’m also wondering if its winter making me feel like that. I need to get winter out the way before I get fully gloomy 🙂
Keith B Walters (@keithbwalters) says
You keep that positive attitude – nothing or nobody can take that away from you.
Oh, and keep keep keep writing – I’m sure it helps you in all the ways you realise it does and others that you’ve yet to happily discover too.
Rebecca Bradley says
Thanks Keith. Writing is an amazing uplift for me. I’m never letting go 🙂
Donna D says
I really relate to your words, especially about living on your terms. I posted yesterday my thoughts in a similar vein – it is really easy when living with this stuff to go into the dismal rabbit hole, to see no way out – but there is a way out and it is our attitude. Even if we are slowed down and need to rest and recharge (often, a lot, way more than others), even when we feel pain, it is our spirit that helps us to live happy fulfilled positive lives. Thank you – I really appreciate the light of positivity in the face of adversity that you have shared.
Rebecca Bradley says
You are an inspiration to me Donna. You really run at your limitations head on and I admire that. Thank you for seeing positivity within my post. It’s hard work keeping it there at the minute, but it’s vital. Especially in getting through. Thank you.
sharonsant says
You are one truly amazing person and I can’t tell you how desperately I want you to succeed in your writing career. I love that you feel able to share your illnesses with us and talk about them so pragmatically with not a hint of self pity. I feel inspired!
Rebecca Bradley says
Thank Sharon xx
LM Milford says
Hi Rebecca, I think you need to give yourself more credit for just getting through the day! Anything more than that, such as updating the blog or writing anything, is a bonus. I have an invisible condition too (well, mostly invisible) and find I’m often completely exhausted by the end of the day. But don’t give up – simply reset your goals making them more do-able and start again. Keep us posted on how you’re doing. Good luck!
Rebecca Bradley says
Thank you Lynne. I’m sorry to hear you also live with a condition. For me, I think it’s the invisible part / lack of understanding, which makes it more exhausting, because I push harder not to stand out. I should just try to rest when I need to. I just get overwhelmed with guilt when I do!
MarinaSofia says
You are very brave and well done for staying so positive, when many other people would have sunk into despondency. Hope you soon regain your va-va-voom again, take it easy in the meantime and give yourself lots of nice reading treats.
Rebecca Bradley says
Thank you Marina. I’ve read quite a lot this month. It’s been lovely 🙂
melsherratt says
Rebecca, you are my inspiration as much as I am yours lately. Having just been diagnosed after four years of pain in the ass illness, I literally feel your pain and in the very same place! 😉 You amaze me with the strength you find to keep a home and a family together, and then you work full time AND then you find time to write some cracking stuff that I’ve been priviledged to read. You’re doing marvellous, chick, and don’t you ever forget that x
Rebecca Bradley says
Thanks Mel. I know you’re struggling too. Damn bodies. I wish they’d keep up with our minds! X
Vikki (The View Outside) says
(((((hugs))))) honey.
What a great attitude you have!
Xx
Rebecca Bradley says
Thanks Vikki. It’s either that or fall into a dark hole x
Jane Isaac says
Rebecca, Your positivity in the face of adversity is inspirational. I wish you well my friend & hope you find some comfort in your writing. * hugs *
Rebecca Bradley says
Thank you Jane xx
jamieayres says
This is was such a touching blog post! You are an inspiration to me. I can’t even imagine what it must feel like to be in your body–I am the world’s biggest wimp when it comes to pain. But I just read this verse in my devotional and I pray it over you tonight: “Be merciful to me, O God . . . in the shadow of your wings I take refuge, until the destroying storms pass by.” Psalm 57:1 ~HUGS
Rebecca Bradley says
Thank you Jamie. That was a lovely, thoughtful thing to do and appreciated x
Joanne Phillips says
You’ve got a fantastic attitude, Rebecca, and I really sympathise. You are an inspiration to all of us. We miss you when you can’t blog, but totally understand why. And I know I’m not alone in hoping you feel 100% better soon and back to full strength. Whenever I got through a bad patch with my thyroid illness I just have to try and keep reminding myself that it gets better … there are ups and downs, and it’s in the downs you have to remember the ups. Easier said than done, of course! Thinking of you, Jo x
Rebecca Bradley says
Thanks Jo. I’m missing the regular blogging and keeping up with everyone.
I do try and hold on to the knowledge that I don’t always feel this bad. I can push through it. I know you understand that feeling. Thank you for being there x
Annalisa Crawford says
You have a great attitude. There are lots of people who would completely adopt a ‘poor me’ attitude and expect help with everything they do. You’ve mentioned both of these conditions before, and I think it’s really important you continue to do so, just to raise awareness of something that a lot of people wouldn’t recognise.
Rebecca Bradley says
Thanks Annalisa. Don’t get me wrong, it would be so so easy to slip into that way of things, but I recognise I’d be missing out on a lot, and in fact, just typing that, reminds me of that fact. I’ll keep pushing forward. It may just be incredibly slowly!
nancyrae4 says
I so admire your courage. Many of us suffer serious illnesses people never see or know about. Your blog reminded me to stand up to pain and not let it back me in a corner. You are my hero. Keep writing, baby! It’s the best medicine.
Rebecca Bradley says
It’s not an easy thing to do though is it? But small steps in that forward motion just reminds us we still have a life. Wishing you all the best as you fight your own illness x
Elle Turner says
Your fantastic attitude is an inspiration, Rebecca. Sending you very best wishes xx
Rebecca Bradley says
Thank you Elle x
Barbara says
As I’m living with painful chronic invisible illnesses myself I can relate to what you write. Not giving in to pain and doing your best to enjoy life is the only right thing to do in such a situation 🙂
Rebecca Bradley says
I’m sorry to hear you also live with invisible and painful illness. Some days for me are ok. Some feel like there’s a mountain to climb. I hope there are fewer mountain climbing days for you.
Barbara says
There are good and bad days for me, too. Still more good than bad days, thank God, even though I feel some pain every day, but got used to it.
Miles. says
What a terrifically positive and uplifting post. You are an amazing and strong willed person who is capable of anything and everything. Stay strong, stay positive – you are wonderful 😉 hugs x
test says
Apple now has Rhapsody as an app, which is a great start, but it is currently hampered by the inability to store locally on your iPod, and has a dismal 64kbps bit rate. If this changes, then it will somewhat negate this advantage for the Zune, but the 10 songs per month will still be a big plus in Zune Pass’ favor