08 August 2010

In which I feel a bit sorry for myself

Looking back through my ManikPixi posts, I see that the last time I wrote anything for this blog was back in May last year - well over a year ago now. I started my other blog, Pretty Clever, that April and found myself a niche in blogging about, well, pretty things. My readership grew, I scored a couple of guest posts on other blogs and even got sent free stuff to review, and I started to feel that in some small way I was fulfilling my only life-long dream: to write. (Well, that and to be a laser gun-wielding, alien butt-kicking agent for a super secret government department responsible for kicking alien butt. I'm nothing if not imaginative.)

Life was looking pretty good - The Eccentric English Boyfriend and I had moved in together, my kids were growing up gorgeous, my ex-husband and I had a good (if occasionally awkward) friendship and the severe depression and anxiety disorder which I'd battled daily most of my adult life, and particularly since my separation, was mostly under control (even though an aborted attempt to lower my daily dosage of drugs reminded me that it was still there). Things really were looking the best they'd looked for a very long time.

Then one day in December last year my toes went tingly. A relatively innocuous thing at the time - I'd been wearing (very pretty) high heels quite a lot in the previous few days and put it down to the after-effects of the burning ball-of-foot pain that anyone who wears high heels will be familiar with. But then on a Wednesday morning - the day before we were due to fly down to Dunedin for my foster-brother's wedding - I was washing my, erm, delicate bits in the shower and realised that they were numb. Not good. Not good at all.

Scary thoughts pushed themselves into my head, and I pushed them back out again and flew to Dunedin with EEB and the kids.  I threw myself into preparing for the wedding, giving manicures to family members and enjoying being back in the arms of my foster family. And all the time the numbness and tingling spread. Upwards from my toes and downwards from my butt, eventually meeting at my knees, I began to have difficulty placing my feet properly when I walked and had the disturbing sensation that I constantly needed to poop when in reality I couldn't. Not that I had no need to, I just literally couldn't.

The wedding was lovely - utterly utterly lovely. The whole weekend was. But in downtime back at our motel unit I was searching the internet, listing my symptoms and reading the list of possible illnesses and all the time in the back of my mind a voice was saying "I have Multiple Sclerosis". Which of course came up in the search results, but I was determined that would not be the answer. Determined that the disease which had killed two women of my extended acquaintance at a relatively young age* was not what I had.

We returned to Auckland on the Sunday evening, and Monday I saw my GP who looked puzzled, scheduled an appointment with a Neurologist for that Wednesday and told me that if my symptoms worsened before then I was to go straight to A&E. By that night I was terrified - I'd tried as hard as I possibly could for several days to not think too much about it but I could no longer avoid it. I knew there was something wrong with me, so that night I got EEB to take me to A&E where the lovely young doctor (who later told me she'd rushed me through as an urgent case because she was worried that my symptoms indicated a fast growing tumour on my brain or spine) had the MRI machine fired up in the middle of the night. It takes an hour for it to warm up, did you know? I spent an hour and a half lying in that tiny plastic tube having my brain and spine scanned and feeling very, very glad that claustrophobia wasn't amongst my list of mental health issues!

I'd sent EEB home to bed earlier - before I found out they were going to MRI me - having been told by a nurse that I was likely to be there overnight and nothing much would happen until the next morning. So I was alone when the doctor returned with my diagnosis - two lesions on my brain and a lesion on my spine indicative of Multiple Sclerosis.

Multiple Sclerosis.

The one thing I'd wanted so desperately for it not to be.

She was lovely, the pretty young doctor. She knew she was delivering devastating news, and I felt her empathy. When I told her of my acquaintances, who'd died when they were not much older than I am now, she told me of her friend who was living a healthy and happy life despite her MS, explained that my experience of it wasn't the way it always happened and that medication was improving all the time. And she did help, bless her.

I was given a huge dose of steroid tablets to take, with a few more days' worth to take home with me - the research shows that short, high doses of steroids (rather than longer term lower doses) are most effective in treatment of MS episodes - told I could go home, and to keep my Wednesday appointment with the Neurologist. EEB was slightly irritated to be woken by my phone call in the middle of the night - not at me but at the nurse who had told him I'd be in overnight - and I think I sounded normal on the phone until I said "I've got a diagnosis". "What?" he asked. "Multiple Sclerosis" I said, and burst into tears. There was silence, what seemed like quite a long silence, and then he said - very simply "Oh crap".

By the time he came to pick me up I was a mess, eyes red-rimmed from sobbing. The guy in the cubicle next to me - who was in some serious pain trying to pass a kidney stone - had quietened his moans after hearing the doctor talking to me. Let's face it, nothing is a secret when flimsy hospital curtains are the only barrier between beds. So I guess he'd had to listen to me crying.

Back at home I curled into EEB's arms in bed and sobbed myself to sleep - overcome by grief and fear and only just beginning to grasp what this diagnosis meant.

The appointment with the Neurologist was at its best unhelpful and at its worst distressing. He was offhand with me and made vague noises about how it was most probably MS but I might never have another episode. I came away feeling somehow guilty that I'd made such a big deal about it. Later I read that it's not uncommon for newly diagnosed sufferers to receive this advice from a Neurologist - that there's a school of thought that says it's more helpful and reassuring to the sufferer to think in this manner. Which is of course utter bullshit. The MS patient who convinces themselves they'll never have another episode is only going to be more devastated when the next episode happens. Sure there's a lot to be said for optimism, but not at the expense of medical reality.

After seeing the Neurologist I almost didn't contact the local Multiple Sclerosis Society. I thought that maybe if he was right and I never had another episode I'd be wasting their time. But then I remembered the sight of those three lesions on my MRI - those three white blobs that had no right to be where they were - and I thought of the daily reality I was facing with difficulty walking and constant overwhelming fatigue, and I knew that whatever platitudes he had used I was facing something huge and I needed support right then and there. And so I rang them, and they were wonderful. They sent around the Field Worker for my area who brought me books and pamphlets about MS and sat and chatted and played with the dogs and let me know that there was so much support available. She rings me regularly to check in, and always asks after the dogs.

She also put me in touch with the MS Nurses who work in tandem with the Neurologist and are lovely - supportive and caring and not at all offhand.

The episode passed after about a month and a half. I regained feeling in all the bits where I should have feeling, the fatigue gradually passed and with the exception of some occasional blurry vision problems which have stayed on I started to get my life back.

Except it's a different life now isn't it? Because every day, in everything I do, that thought is in my head: "I have Multiple Sclerosis". I try to keep positive, to live every day to its fullest potential and to not dwell too much on what might happen, and mostly I succeed but that thought and the fear that accompanies it never really goes away. And with it my depression and anxiety returns more often, probably understandably. So I'm less motivated, and finding less joy in the world. I've been finding it hard to get the inspiration to blog over at Pretty Clever - not that I don't want to I just can't summon the creative energy to do it.

So where to from here? Well the old adage "hey I could walk out in front of a bus tomorrow" may be facetious but it is actually true. As is "well it could be worse". Yeah, it could. It could be much, much worse. Still sucks though. But, I have a passion for life that can't be kept down. Won't be kept down. I'll just keep on keeping on. And hopefully find my blogging motivation again. Maybe even start posting here more often - who knows. It's eight months since my diagnosis, and in the last couple of days I've been having some odd little symptoms which I may totally be imagining, or may actually be the onset of another episode. Time will tell, but that's obviously why it's on my mind even more right now, and what prompted this post. It can be really scary thinking about what this often invisible disease, with its wide range of possible symptoms ranging from irritating to incapacitating, could have in store for me next.

But life doesn't just have MS in store for me. My life contains an Eccentric English Boyfriend, two gorgeous children and excessively affectionate pets. And that's just in our house - I step outside our door and there's a a big wide world out there full of cool stuff. So whatever happens from here on out I should just enjoy the cool stuff.

* The lovely MS Society Field Worker who facilitates my newly diagnosed group is quick to point out that MS doesn't, as a rule, kill its sufferers - they die from complications related to MS. They become bed-ridden and develop pneumonia, and unable to move around and clear their lungs they succumb to it. Mostly that's reassuring, except if they hadn't had MS they wouldn't have developed pneumonia, would they?


  1. Oh Selina, even though I knew most of this and have talked with you about it, it brings tears to read it. You are in my thoughts often and I was delighted to read your posts about your trip.

    this is so well written you are truly an excellent writer and even though the topic is not pleasant to read about it is so well written. Lots of Love Sue xxxx

  2. What Nixxy said!

    I think you are permitted to feel sorry for yourself once in a while. Chin up, and take care xx

  3. I don't think you're feeling sorry for yourself, just an understandable reaction to an incredibly scary diagnosis (for genuine feeling sorry for yourself you should have seen me at week 4 of my chest infection!). I can only hope you are able to keep as positive as you can as much as you can, keep sharing your words and blogs with the rest of us, and remember I still have a mission to make you run :-)

  4. Hi Selina
    Kerry and I wish you well in your journey. May you be surrounded with love and good friends and family.
    (Glitter Gal)

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  6. I learned more about the reality of MS from this post than from anything else I have ever read, and it brought tears to my eyes. Thank you for sharing.

  7. I knew bits and pieces of this, but reading your whole post about it reinforces my opinion that you're one of the strongest women I know. *hugs* I'm with Nixxy, you're amazing.

  8. I echo Sue's comments Selina, tears and all. My fingernails and I only got to know you at Tim's wedding, and it doesn't take long to know what an awesome woman you are. I wish you all the best on your journey. Please know I am holding you on my heart. Much love and many hugs, Sandy xoxo

  9. Just to reiterate all the "You're amazing" comments...

    I can't even imagine how scary something like this must be, but I am, as always, impressed with your resilience. Even when it is getting you down and freaking you out you manage to write about it in such an honest and deep way. I really admire that.


  10. Hi Selina, ditto to the tears, please keep posting, there are others out here that get down, and not only does your resilience and attitude really help so do your pretty clever posts so please keep posting.

    Just keep on keeping on like you said, and find joy all the time, say hi to EEB for me, I love that he is a sidekick in your ass-kicking life, and thanks for being you and keeping your blog alive, I too think you are a great writer, I don't keep up with much but for some reason I keep coming back to your stuff... :)

  11. Selina this makes amazing and very emotional reading and I have tears in my eyes as I read it. You know that we love you and think you are an amazing woman and we are so privileged to have to in our lives. What an amazing moment when someone said we have someone who needs a foster family and the minute we saw you we knew you had to be in our family. Stay strong and know that your extended family love you to bits. Susan and Phil xxxxx

  12. wow, one of the most engaging posts I have ever read on a blog. I agree with the other comments, your an amazing women