Sunday, 10 July 2011

Where to begin

Sometimes it feels like there is so much to write/say/share that I never get around to it. Posts buzz around in my brain but somehow don't make it onto the blog and of course they are then lost into the ether, no matter how much I think and strain my brain there is no way of recalling them.

Today I want to put on record the good times and the bad times. Not in a whingeing way, not in a blissfully ignorant living in denial sort of way. Just the bare basic facts.

There are days when it is all too much. Today was one, but I know that it was made worse by yesterday's trip to Alton and the memorial for our dear friend Simone's husband who died so tragically three months ago.

Setting that apart however, the pain was hideous. I tend to refer to it as "uncomfortable" but then there are times when I think to myself "for f***s sake, anyone else living with this pain would be screaming from the rooftops and taking all the drugs on offer! It is true that you become accustomed to the pain after scoliosis surgery, and apart from the comfortably numb day about six weeks ago it has been my constant companion.

I don't want to whinge, I just want you to understand.

I wake up in the morning and the first thing I notice is the pain. I reach for the paracetamol, maybe switch the heated cushion that is my night time companion back on, look to see if Ian is there and likely to be offering a cup of tea!

A shower can help, the painkillers kick in, and after a struggle with getting dressed (especially if it involves a pair of tights!), straightening my hair (raising my arms above my neck - just - hurts!) and the morning chores I set off for work.

Walking up the slight hill to the tube can feel like I am trying to conquer Everest. I make use of the breathing they teach you in antenatal classes! And the journey itself - well it all depends on a. getting a seat, and the type of train it is b. the person sat next to you and c. keeping occupied. So an ideal journey is sat on a new train with no one by my side and a paper/good book/music. A "less ideal" journey is standing on an old train being thrown around and unable to read. I often cry - the sort of tears you get when you stub a toe or hit your funny bone. Not self pity tears - just pain.

My surgeon recommended I see his colleague - a pain management specialist. Long-story-short - he didn't tell me anything I didn't know. He wrote me a script that would cost £300 to fill so I am waiting to see if my lovely GP will write me one up on the NHS. If not - no fancy fentanyl patches and lollipops for me!

Bottom line - if I have a pseudarthrosis he can do nothing for me - it is down to more surgery. More than a week off work, less than eight. I've had endless messages saying fingers crossed it isn't that then but what if it isn't....?

Pseudarthrosis - non fusion - would mean an op to insert genetically modified artificial bone. With the hope the pain would then go. No pseudarthrosis and where does that leave us...? Maybe intolerant to the titanium and surgery to remove. But I have grown attached to it - and it to me - it is a reassuring presence, keeping my spine safe and protected. I do not want it removed.

Perhaps long term pain management is the answer - get over the side effects and don't worry about withdrawals if they are a permanent fixture in my life?

Meanwhile.... there are good days too. I saw Take That - twice! I saw The Killers, Bon Jovi, Kaiser Chiefs. I met Schofe, saw The Cube recorded. Watched Bridesmaids and laughed! I have four amazing children, a lovely husband, a comfortable home. Look at East Africa - I have it made!

Glass is half full - has to be. But thanks for being there on days when it doesn't feel quite like that.



  1. Hi Linda
    I haven't commented or posted anywhere for months and months and I thought you'd like to have someone comment on your blog (I've got a blog too ;-)). I'm so sorry you are going through this, it's been going on so long now. I imagine your best case scenario (other than the pain disappearing or lessening spontaneously) would be to find evidence of some small area of pseudoarthrosis that Mr Tucker can sort out. I absolutely agree with you about not having the instrumentation removed, I can never understand why some people seem eager to do that, pain or not. What is the next step for you? Are you awaiting some diagnostic tests/scans?

    I'm 9 months post-op and I still have a LOT of pain and day to day life is difficult, especially with my little boy to look after all day every day. I could quite happily lie on the bed all day but that simply isn't me. But like you say we have so much to be grateful for when we see what others in the world have to suffer.

    Stay positive Linda, you are in my thoughts x

  2. Thank you so much Lynn - I have only just seen your post but it sounds like we have much in common. I could happily take opiates, lie in bed, read and watch tv, expect others to do everything for me and claim benefits but like you that isn't me.

    I have a CT scan on Monday - will post again when I know more. Meanwhile I'd love to chat - on the phone or over a coffee/glass of wine - if you felt like it?

    Thinking of you too and yes - lovely to have a comment - what is your blog address? xx

  3. Hi Linda
    I feel awful, I've only just realised you commented on my blog :-) thank you so much!
    I haven't really been checking much online as I feel so down, not just about my back but, well life in general :-(
    I think it would be lovely to chat over a coffee sometime (wine hasn't passed my lips since having Finn 5 years ago!!!) I'm hoping someday soon I'll feel up to travelling to London on the train.
    I hope you are doing ok?
    Lynn xxx