~ Join us on a journey of passion and adventure ~

Thursday, August 20, 2009

Treading Treacle

I'm getting a teensy bit fed-up now. I seem to go two steps forward and four steps back in my recovery from this latest ms health blip. I'm probably trying too hard, but how can I not? I'm b-o-r-e-d, and I don't agree with getting bored, which makes it all the more awful. There are so many things I want to be doing and life's too short!

Okay, rant over. Here's the plan:

I'm looking forward to receiving Gray's FINAL chapter on his historical - should be ready to be posted by Monday - YAYY! The only stress will then be hoping that the postal system doesn't let him down and meets the NWS deadline - but I'm not allowed to worry, so I'm not (well, I'm trying not to, anyway...)

Daughter is raring to go from being a 'live-in' guest to a visiting one. Three days and counting...

Son is...well, least said the better really. I have a mantra that I must remember to say more often (like every two minutes!) I shall not worry. I shall not worry. I WILL NOT worry. I'm still waiting for its effect to kick in.

I'm now off to make the most of my enforced 'rest' and dive back into my latest read: Jill Mansell's Rumour Has It which I have to say is helping me loads - it's laugh-out-loud funny and I'm loving it.

What's everyone else reading?

Saturday, August 15, 2009

Looking forward

Firstly, many thanks to everybody for all the hugs and support. I've learned so much these past weeks and I've been relieved to discover that I do have the coping mechanisms to get through a dreaded R without steroids. I feel a little more in control of an uncontrollable situation, if you know what I mean?

I'm not completely out of the woods but there's plenty of sunshine peeping through the branches to remind myself that I will be soon. :)

We have an exciting week ahead: My dd is flying the nest [for real this time]. I'm very excited for her because she is moving somewhere beautiful and peaceful and she'll finally be able to focus on her studies without any interruptions (namely from those who are at university for the 'good' times and not the study).

Gray will have finished his NWS submission in six days. I'll be so relieved and happy for him. He prioritised helping me get mine finished, printed and sent off, and without him I'd never have done it. I'm really proud that despite difficult times he's still made his daily word count.

Gray and I celebrated our 4th wedding anniversary this week. The 'real' celebrations will come later in September when he whisks me away for a gorgeous weekend somewhere I've always wanted to visit. More will be revealed later next month.

I'm hoping that another week and I'll be back to blogging regularly. Incidentally, what do you think of my new backgrounds on here, the review blog and twitter?

Tuesday, August 11, 2009

MS health blip and not taking steroids

I’ve had multiple sclerosis for nine years now and not a day goes by when I don’t learn a little more about my journey with it.

There are a few reasons why I've decided not to take steroids this time around and they are all related to the side effects:

  1. I loathe the weight gain but even worse is the moon-shaped face. Seriously, over the course of the years I’ve ‘lost’ me, and trust me, it’s a weird feeling.
  2. The primary reason is how ‘out-of-it’ steroids make me – especially in the week following the short, sharp course. Withdrawal is horrendous.
Yes, steroids can and do help get me through whatever loss I’m experiencing at the time – for me that’s often been my legs and/or vision. I thank God that these body parts eventually return albeit not to their former glory. This time I've been luckier - it's primarily an exacerbation of the dizziness/vertigo and chronic fatigue.

So, what have I learned during this episode?

  • I always assumed that it’s the steroids that make me so ill especially during the second or third week of a relapse. Now, I’m not so sure.

Sunday was my worst day yet. I felt like I was recovering and then, BANG, I’m worse than ever.
  • So, I’m now wondering whether that’s the relapse per se and *not* a side effect from the steroids.

I’m finally learning that I can’t rush a recovery no matter how hard I try. In fact, I’m thinking the harder I try the longer it’ll take.

  • So, I’m learning to be kinder to myself.
I’ve also discovered that with the exception of my hubby, *nobody*, be they friend or family, truly ‘gets’ what MS actually does to a body. Some people assume that because I ‘give in’ and spend times in bed aka ‘duvet’ days that I must be depressed. Not so. A relapse is the one time that for the most part, I accept things are what they are. It’s a necessary means to give me the strength to cope with the many symptoms that I experience every day once I’m back to my ‘normal’ self.

Yes, I get frustrated. Yes, I get fed-up. Yes, I also have the occasional angry moments. But, no, I’m not in bed because I’m depressed. I’m in bed because I’m going through an intensive blip of the multiple sclerosis. The symptoms are the same as those I’m used to coping with on a normal, day to day basis. It’s just that they’re more intense and literally stop me in my tracks.

I believe that this intensity is my body’s way of enforcing a period of rest – so I can resume daily life stronger than before.

I guess the main learning curve for me is:
  • Respecting my body *with* the MS
  • Pleasing myself and not other people’s expectations.
and the hardest one of all is:
  • Being kind to myself because I deserve it!

Thanks for listening.

Monday, August 10, 2009

True to the reader and true to myself?

I’ve tried many times to keep this blog about writing and my journey to publication separate from my personal life. However, I’ve been asking myself many questions these past couple of weeks, including, am I being true to my readers and true to myself?


I’ve come to the conclusion that no, I don’t think I am. Yes, this blog is about my (and Gray’s) writing journey. BUT, I/we can’t escape from the simple fact that our journey goes hand in hand in the company of living with multiple sclerosis. Therefore I should include these difficulties and acknowledge the effect they sometimes have on my road to publication. After all, if I hide this major part of my life doesn’t it mean that I’m pretending to be somebody I’m not?


I’ve worried in the past that my health difficulties could go against me in the publishing industry. But I’m not comfortable hiding these important factors from editors/agents. Surely, pretence isn’t the right basis on which to build a professional relationship?


The fact is that I’ve been a writer far longer than I’ve lived with my neurological condition. I never want the MS to control my life to the degree that I get scared of being found out. Integrity means the world to me. Anybody who matters will know that I am *not* the multiple sclerosis; I am Sue, the writer (mother, wife, etc.) who also happens to have multiple sclerosis.


I also respect that I’m not the only writer out there living with the difficulties that a health condition brings. I want to inspire other writers to never give up on their publishing dreams no matter what curve balls life throws.


So, the upshot of this post is to say that I’m still here and I’m still blogging albeit with a difference: I’m no longer hiding the ‘real’ me.


Monday, August 03, 2009

I *did* say hopefully...

in the last post, didn't I?

Well, I should have recognised the signs - there's been enough of them.

I haven't had an MS Relapse for nearly 2 years but it seems that's changing. With the agreement of my lovely doctor I'm going to try to ride out this latest health blip without the dreaded steroids. Thankfully, so far, my legs and vision haven't been affected, it's just balance problems due to exacerbated dizziness/vertigo compared to what I usually experience on a 'normal' (for me) day-to-day basis.

I'm very fortunate to have the support of friends and family around me - especially my wonderful hubby. The forseeable future will be frustrating for me having to give in to not being able to help those I love. There's never a good time for anybody to be ill but I'm going to (try) to accept the inevitable gracefully. After all, I have so much to be thankful for. Namely:

  • My wonderful hubby
  • Finally having experienced an RNA conference
  • Making new friends at conference - and one who's become a very special friend.
  • Making the NWS deadline (my completed Romance is being sent off this week)
I plan to spend my enforced 'break':
  • Editing/proofing Gray's Historical so he too will make the NWS deadline
  • Reading lots of FAB books
  • Enjoying quality time with my daughter before she moves into her first home later this month
  • Meeting up with my mum occasionally in the virtual world of Pogo and no doubt losing my intermediate rating (again!) on Canasta.
  • Revising my Romance with NWS critique and submitting the partial to Mills & Boon.
I may be visible via twitter and my review blog but that's because I often cheat and pre-program the posts.

Hope to be back to my 'normal' self sooner rather later. :)