SURGERY! (How Sad That I’m Pleased)

I am not going to moan about how much pain I am in today, or how slow the NHS system is. I am not going to complain that I have spent 18 months banging my head against a virtual brick wall to get someone to fix me. I am not even going to gripe about having to spend all day today at hospital, after a 9am neurosurgery appointment was late by 20 mins, and then having to wait 1 hour for an unplanned x-ray, having to wait for what I was told would be 2 hours in the planned assessment team, but turned out to be 4 hours. I am certainly not going to bang on about not being to go to work at all having told them I would be in at about 10:30am, or using up all my mobile phone battery reading mumsnet posts and not being able to call my husband to get me (had to use a payphone, how old fashioned is that?).

No. Not moaning. Because, I have FINALLY been put on my neurosurgeon’s waiting list for discectomy. Finally, someone has said they can do something to fix me. YEY! Ok, he has not given me guarantees, but the odds are pretty good though I think – 80/90% chance of an 80/90% improvement in leg pain. But, only a 15% chance of any improvement in my back pain.  That’s not so good, but I was expecting him to tell me something along those lines so not a surprise. 

I liked this neurosurgeon. He was pleasing on the eye which is always helpful, and spoke to me, not at me. He was pretty honest, but was interested in my view about it all. I didn’t feel rushed and ignored like I have with so many other health professionals, a number on a list to be spoken to and ticked off/kicked out. I was expecting to be talked over and the decision already made.  Pleasantly surprised.

The recent MRI shows that the vertebrae of L5 (the top one of the L5/S1 section) is out of alignment - it’s sort of pushed forward over the top of the vertebrae below and this is probably why the disc prolapsed. He doesn’t know why this misalignment happened – could be injury, could just be the way my spine developed/a joint stopped working so well. The disc is now bulging into the nerve space, and there is still an annular tear which may well have been the shower curtain hitting my back (read my previous post about the theory of how the tear got there), but the disc would probably have already been bulging at that point and so an ‘easy’ target.

Mr Neurosurgeon said he would not normally enter into the idea of spinal fusion with a prolapse such as mine and right at this moment he is not intending to do so. He does not believe the success of fusion generally is good enough to put someone my age through that trauma, and that back pain itself can be caused by many many things and so fusing is too random. However, this vertebrae that is not in the right place, along with the fact that the entire rest of my spine is in perfect condition with little sign of degeneration, indicates that there is a large enough coincidence between me having severe localised back pain, my back ‘going’ regularly and the potential instability of the vertebrae. For that reason he is considering fusion.

So I have had some x-rays on my spine with me moving around in different positions (ouch!) to see if the segment is moving at all. Pretty undignified it was too, dressed in the silly gown with a gaping back, and having to reverse into the loo else show my butt to the very full waiting room.  If the segment moves, he will review his decision and consider fusing the vertebrae when he preforms the discectomy, if no movement, he will wait and try the discectomy first. If the back keeps going after the op and recovery (a good amount of time) he will fuse the spine. AND he told me how he would do it. OUCH again. 

Recovery is quick for the discectomy – 4 weeks if I’m lucky!  If all goes well, I could be bodyboarding within 8-10 weeks – maybe even this summer!

“Let Boys Be Girls”

I am lying in bed trying to summon the energy to do some much needed chores – calling in sick at work due to another ‘relapse’ of back pain, calling a good friend to arrange her to visit so I can countersign her passport, checking on Winter Boy who is doing goodness knows what in his bedroom, and well, er, going to the Loo. My reluctance to call people is that this involves a game called ‘Hunt the Phone Charger’, my reluctance to do that, aside from the pain this produces is also largely for the same reason as not wanting to go to the loo and not wanting to check on my boy – Every Single Room in this place looks like we have been burgled and so I cannot bear to wade through toys, clothes and other debris just to find a phone and to find my son.

And so, instead I am sitting here with the skylights open, the sun on my face, putting it all off in the name of ‘writing’.

I have been thinking, with a smile on my face, about my little boy (who has, during the time of writing this now wandered upstairs with the iPad asking me for daddy’s password so he can upload a Toy Story game) and his love of dressing up and it has got me thinking, not for the first time about our values in this family of ‘boy toys’ and ‘girl toys’ especially with campaigns around such as Let Toys Be Toys (encouraging retailers to change the way they advertise their toys to ‘boys’ and ‘girls’) and with some surprising attitudes of those around us.

LIke my daughter as a toddler (who, apart from occasionally forgetting to put knickers on before going out, has developed a sense of shyness about her body in front of friends and strangers in the last 6 months), he much prefers to be stark naked than trapped in the constraints of clothing, often discarding his clothes the moment he gets home. And even when he concedes he needs to wear clothes, getting dressed can be a battle as he changes his mind about what he wants to wear for pre-school or to the park every 30 seconds or so. When Winter Boy has clothes on, he adores dressing up. Between him and his big sister they have an ecclectic mix of princess dresses, doctors outfits, nurses uniforms and cowboy clothes, along with a few of my old clothes from when I was a size nothing (can’t believe I ever fit into some of those things).

But Winter Boy is never happier at the moment than when he is dressing as a ‘girl’. He has recently been photographed wearing his sister’s emerald-green sparkly party dress which shimmers in sunlight. Apart from being huge for him, he actually looked quite stunning in it and looked the spit of his sister at the same age. He wanted to be a princess and go to sleep as a princess that night, and so after a few sad big rolling tears of protest dropped onto the dress we let him get into his Thomas the Tank Engine covered bed as Princess Winter Boy and after a princess story, he insisted we say “goodnight princess” to him.

We have just been given a big bag of clothes from a parent at Summer Girl’s school for Winter Boy. It’s all too big, but that hasn’t stopped him insisting on wearing his new Ben 10 shirt for 4-5 year olds to pre-school and his new 5 year old ‘Cars’ PJs to bed. However, despite his love of his new ‘boy’ clothes, he insisted, at 8pm on Friday evening, after stripping out of those much-loved ‘Cars’ PJs, that he was going to bed as The Queen of Hearts. After a few attempts at refusing, by us parents, we gave in and let him dress up as the Queen of Hearts, have a story about Queens in bed and he went to bed without a fuss, tucked up in his Gruffalo duvet, with the little fluffy sleeves of the dress poking over the covers. He corrected me once again when I gave him a kiss goodnight “say ‘Goodnight Queen of Hearts’ not Winter Boy!”. About 5am when he woke proclaiming that he no longer wanted to be The Queen of Hearts. R changed him back into himself and he snuggled with us, happily announcing that he loved being a Queen, but prefers being Winter Boy before going back to sleep.

I have been shocked at some of the things people have said about these events. Seemingly intelligent friends of mine have made comments such as ‘you can’t do that to him! it’s cruel!’ and ‘he won’t forgive you for that [photo]‘. When he has had a colourful wrap in his (apparently far too long) gorgeous blonde hair, there have been cries of ‘but he’s a booooy!’ and one time a male friend actually took the hair braid out when I wasn’t there (I was a little cross about that one I can tell you). Seriously, what do those who have a problem with him twirling in a dress or having fun braids, or wanting to be called ‘Queen of Hearts’ think is going to happen to him, other than growing up to be a well-rounded, well-adjusted child, and then into a well-rounded, well-adjusted man? Wearing dresses and having long hair and hair wraps wont ‘make him gay’ or ‘transgender’. If he is ‘gay’, well, then that’s just how he is anyway and as parents, and as his peers around him, we should be supporting and developing that aspect of his character as he grows, not stifling it by providing negative labels – which could lead to issues around sexuality, and ultimately unhappiness, as he grows into a man. If his sexuality is not already defined as ‘gay’, being the Queen of Hearts is not going to change that, it will just mean he is being a child having the time of his life. And I am loving watch his fun, cheeky, happiness grow.

Interestingly, my Summer Girl has just started a football club, as a result of a local good football club bringing coaches into her school. No-one seems to bat an eyelid at the notion of her dressing in a masculine manner, having her beautiful blonde hair scraped back, wearing football boots, shin pads, and football shorts. She too is being the child she wants to be, not constrained by the expectations of adult society. And it’s fabulous.

I should probably get up now…

A Nest. One Viper.

I am in such a bad mood. Frustrated, fed up, cross, angry. GRUMPY. I don’t know if I want to hit something and scream or cry. It’s that kind of grumpiness that makes me want to petulantly shout ‘oh just fuck off’ to anyone who says anything that annoys me. And it’s that type of crossness that means anything annoys me. You see that circle there. It’s vicious alright.

It’s not proportionate to events. It’s actually quite irrational. It’s not PMT, it’s not horrendous chronic pain. It’s pent-up frustration and unspent energy. And little things irritating me that have built up through the day and exploding like a fizzy bottle shaken too much.

I wasn’t in this mood all day. I had spent a lovely morning with my Winter Boy at a softplay centre, where there was a bored looking woman doing music and dancing with the children. And, as it turns out, with me. I have no rhythm any more and I suspect this realisation that I’m no longer able to rock with the toddlers added a teensy bit of Fizz into that bottle.

I had my third Expert Patients Programme session this afternoon. R had initially asked if he could drop me off, I said I needed the car. However, while I was out shaking pompoms and I utilised my fab female skill of multitasking and mentally realised that Summer Girl finished school during this session, unlike for the last 2 sessions over Easter holidays. When I got home I agreed with R that he does in fact need the car. It was not enough that I had bowed down to his greater wisdom. No. He was now cross about having to drive me there, and pick me back up again at 4:30pm. What was he going to do while I was there, with the children? Well, the same thing you had thought of doing when you  first suggested it and it was your idea. For Fuck’s Sake. And that was another dose of fizz added.

I was late. Ok I wasn’t late, I rocked up by the skin of my teeth, but that’s not the point. Because I am on R time, not my time. That means that before we leave, he needs to make himself a cooked lunch. And I am on Winter Boy time, not my time. And this means that before we leave Winter Boy had discarded his trousers and pants never to be seen again. As R drove the car along an alternative route to try it out, which is always great when you are late, another huge dose of fizz was injected into the bottle.

The Expert Patients Programme was good. We finished early at 4:15pm. R was not on his way, he was going to be 20 mins he said. Not sure how he figured he would be picking me up at the normal finish time of 4:30pm and so, with the wind in my hair, and my bones, the fizz started to creep up towards the neck of the clearly small bottle. But as I felt it rising, rising, I made a point of not shaking it, and started to walk. R met me half way.

Now, one thing that had kept me sane all day was the prospect of going swimming. With my new goggles. and my new nose clip. I had even dug out my flip-flops for the poolside and was ultra organised. Everything was packed right down to my razor for the long hot shower afterward, everything apart from my swimming cap. That’s around somewhere right? But, as I walked to meet R, I realised I really fancy some gym time, I need to burn sweat. I have too much energy, it needs to get out. I think about music and yes, that’s what I want! Can’t wait. R has obviously picked up my iPod nano from his locker at work, where it has been living for the last 2 months, as I asked to do so this week, and he went in today for something. The fizz settled a little.

I made tea for the children, and got ready, feeling my unspent frustrations all about to be pounded away at the gym. Couldn’t find socks that match, children had been playing with my goggles and headphones and then I asked The Question. I knew the answer as the words tumbled out of my mouth and I tensed everything up waiting for the bottle to explode as the words ‘oh shit! no sorry’ left R’s lips. I cannot exercise without music. I just can’t. OK, I can, if we are going to be picky about it. But I don’t enjoy it, I can’t pace myself and it goes from being fun to being a huge chore. I spent the next hour trying desperately to download Spotify to my Smartphone, only to find it’s not that fucking smart. So, absolutely devastated, crushed, that my perfect plan fell apart, the fizz quietly spilt out of the bottle as I stopped myself from throwing the phone at the wall.

But, that wasn’t enough to ruin my plans. I would just have to  swim, with my new goggles and new nose clip. But, can I find the FUCKING SWIMMING CAP? And so my evening has actually been ruined. I can’t go swimming now. I’m too cross. The bottle has no more room, and has been shaken violently. I am so fucking cross I am not really sure what to do with myself. And because it’s not entirely rational angst, I can’t deal with it ‘sensibly’.

The best thing to do is quietly take myself off upstairs to engross myself in social media world, but as I am not rude, I tell R I am going upstairs. ‘no you’re not! Dinner is here, if you’re not going out, you got to eat, you didn’t eat lunch’. I’m not hungry, but I might be tempted ‘what is it?’ ‘fish and chips’. FISH AND FUCKING CHIPS? FFS. we had that last night! I don’t want that again. Especially as I made a special tuna with chilli and garlic, home-made chips and salad. I don’t want oven chips, spaghetti and breaded fish. Bleurgh.  And at this point, the only thing that I can do to resolve this situation is to let the fizz outa that goddamm bottle and have a full-blown Proper Strop.

The cork hit the cat, who had tried to nuzzle and suckle and irritate me, after I had stomped up the stairs, and thrown myself onto the bed in a dramatic impression of a teenager not allowed out with her friends past 9pm and so I did petulantly shout ‘oh just fuck off!’ at her.

And I am now nestled in my duvet, fluffed with pillows I still feel poisonous because things didn’t go my way. And I still haven’t got my unspent energy out.

And I’m now fucking hungry.

For My Summer Girl. “HOME”.

My flat is my favourite place to be right now, shall I tell you why and how? I don’t have too much. ok, perhaps too much clutter. but material things, well they don’t really matter. I can’t open some cupboards as the hinges are broke, the kitchen wall’s falling down and the garden (yard) is a joke. We’ve not fixed the skirting and the kids room needs some paint. But we have other priorities,  stressed? well we ain’t. So what do I love about this place that is mine? I sleep here, I love here, where I spend all my time. My children were raised here, memories were formed, it’s cosy and comfy and snug and it’s warm. We have a door with a lock to shut the world out there. We have colour and brightness and laughter and cheer. There are books everywhere, cooking smells and incense, drums and guitars, music and fun. Toys are not kept in one place hidden, there is no room to which entry’s forbidden. We have plenty of space with high ceilings, nooks and crannies, room to play hide and seek, room to put up visiting granny. Big bay windows that let me try to grow plants in pots, although if I’m honest, green-fingered, no, I’m not. I feel safe here, I belong here, I don’t want to leave this place, would not trade it in for lots more space. It’s my home, the kids’ home, R’s home, and also our cats’. There is Nowhere I want to be more than snuggled up in this flat. 

- For My Summer Girl aged 6 and a half.

Taking Control Back: The Expert Patients Programme – First Day

You might, or might not have read my post about my interest in the Expert Patients Programme. I won’t go into lots of detail about the Programme here as it’s well documented in my other post.

After a frought week due to having a sick  husband, children who needed entertaining, work and preparing for Mother In Law to visit – which of course entails making the house look beautifully tidy and pretending we live that way all the time instead of the shitpit we actually live in – I almost, almost, cancelled. “I don’t have the time” I said. “I have too much to do” I made excuses. They were all true. But also, my back pain has been under control for a few weeks, and so, well it’s not a disability any more is it? I can walk relatively normally – apart from apparently I still limp a little, have a slightly odd gait, but can’t notice myself – and so I am taking up a valuable space that other’s can use. But, none of that’s true is it? I had to remind myself that if I didn’t do this, I would relapse at some point and be devastated that I have not moved myself forward. I HAVE to recognise that a month at most without pain so bad it makes me cry does not constitute a cure.

And so I went. At 9:30am on the dot. Without my paperwork as I lost it and having confirmed so late in the day I was not sure if I was expected. I was not expected. There was no course at 9:30am. Or 10am. It was at 2pm! I just laughed it off as typical of my chaotic and unorganized week.

I went to Session One of the Expert Patients Programme with probably far less trepidation than most of the other participants as I am used to being on the other side of the desks. I could feel the fear in the room from some when there was the prospect of talking, and I could sense the keenness of others to have people listen to their conditions, to hear what they have been experiencing, and later found that some of those people hardly see anyone socially due to their conditions making them housebound.

The Expert Patients Programme is, I have learned, an accredited programme which is run across the world, and was developed as the Chronic Disease Self Management Programme at Stanford University, California, who now hold the licence which allow it to be run, and is facilitated the same way throughout the country. I like that, as it gives focus and structure to the group, where it can be possible to run away with talking about our ailments for 2.5 hours, it hones us in on the purpose of the sessions, to learn the skills to be expert managers in our own health. Now, some people prefer to have free-flowing groups, but I guess that is where my own experiences of facilitation come in. Where it originates and how it developed interests me so sorry if you have glazed over.

Any fears or anxieties were immediately quashed at the sight of the full Tupperware container full of Bourbon Biscuits. Now I am a great fan of Posh Biscuits, but there is nothing better than bourbons. I felt at ease.

I won’t bore you with the full details of the first session, and of course we all entered into agreements of confidentiality so I shan’t divulge details of the participants, but, my over-riding feeling initially was that I was somehow a fraud, that my condition did not warrant me being there. There were participants there who have to suffer with multiple conditions at once, some as a consequence of other conditions, some with  multiple un-connected ailments and my life felt like a breeze – I have periods of wellness, I can still socialise (although I do that less and less), I am managing to hang on to my job.  But, I had to once again remind myself that this was a Good Day. And on a Bad Day I would possibly not even be there. Re-enforcing that was the fact that not one person saw my condition as minor and lots of what I shared with the group about the challenges I face as a result of my condition were equally shared with other group members and I realised that it was not about who had the most serious condition to contend with, there was no competition in the room – we were all there as we all had a condition or more than one that affected our lives to the point of disability and we were all there to find ways to manage. We were all in this together and the group gelled quickly as this became clear.

We all shared some of our personal challenges as a result of our condition, as much as we felt comfortable doing so, and it became clear that, despite the individual challenges that were unique to us alone, there were common ones that affected ALL of us in the room – I expected pain to be a shared challenge, and it was, and mobility for a large group of people, again it was, and not being able to do the things we used to be able to do, but I was quite surprised that fatigue came up time and time again. Every Single Person in the room struggled with fatigue as a result of the differing reasons for bringing us into that room together and it helped me a lot to realise that the continuous and horrendous and often debilitating tiredness I experience now is not unique to me, does not mean something more sinister is wrong, but goes hand in hand with chronic illness. And, as a result some of the course is designated to managing fatigue as it is recognised as a symptom of chronic illness.

The other challenge that we all faced, despite our wide ranging disabilities that have brought us to the same place, was that we are all struggling to come to terms with our conditions, with accepting that our lives have changed forever and that we won’t wake up tomorrow with a magic cure – it won’t go back to how it was before and no-one in the room had fully grasped that yet but we have already all made big life-altering changes and today was the start of another big change – acceptance.

And all 12 of us in the room had taken a huge step in acceptance by coming to this first session.  Even if I don’t find the strategies for coping new to me, just consolidating what I know, I have already come a little bit closer to accepting I have a disability by attending this first session.

Although, I am feeling so much better, it might have all been a misdiagnosis and I am on the mend right…?

Having a Disability at Work. I Refuse to Give In.

It was a very cold crisp day, a Wednesday, at Dartmouth Zoo. As R dropped me off in the disabled parking area, I was met with the sound of African Beats. It was very early for such loud music but welcomed the entrancing sounds as I shuffled into the visitors area and stood in the long queue waiting for coffee.

I felt out of place. I felt like I didn’t know anyone, felt exposed and my (what I am now recognising as a) disability advertised as if I was shouting it out through a megaphone, people glancing in my direction as I stood in discomfort for what seemed like hours.

This was my work conference. I had been back at work for two days after a 6 week absence. I already felt alienated as I had been off so long, but I had been determined to return. 6 weeks is too long and the lack of enthusiasm, excitement or pleasure to see me demonstrated that my relationship with colleagues had shifted from me being an equal member of the team to a resource burden. And, as I stood there sandwiched between two managers and the Big Boss from out of area, I felt more alien to the group of people than I had ever felt.

I wanted to cry. I wanted to ask R to come back and take me home. I knew then that I was not ready to be back at work. Every step I took continued to shout out that I was in pain and I was met with looks of pity and sympathy, but very little actual words. People have stopped knowing what to say.

I stupidly didn’t take my crutch and regretted that almost immediately. I am not sure I know fully know why yet, but it is more than a physical crutch. It gives me a silent explanation of the pain pain on my face, it makes my hobbling and ginger steps less obvious.

Later, as I sat to eat a hastily warmed through chilli as my colleagues didn’t expect me to turn up so didn’t book me any lunch, a colleague who was sat at the front of the conference noted that he saw me walking very carefully and painfully to the toilet halfway through the conference, and what that told me was – if he saw, then everyone else saw – and not for the first time I felt like crying.

As the conference ended, I found myself walking downhill towards the work bus that would be taking me back home, my lift from the morning not available. I found myself walking slowly, alone down that hill as people rushed past me, in twos or threes. I moved to one side as more than one car full of my colleagues drove past me down the long uneven walk, not stopping to offer me a lift to the bus. And I realised that things won’t ever be the same at work again. I sat next to a colleague in silence on the way home for 20 minutes as for the final time that day I held back tears realising yet again that Equality Acts cannot make people treat others fairly.

I didn’t go to work this week. Following that horrendous experience of pain, ignorance, alienation and hostility as the Resource Burden, I realised that I simply cannot cope with being in that much pain and yet still show I am worth the wage I am being paid. I realised I cannot work while my pain is so obvious people literally cross the road from me at work.

It was with trepidation that I made the call to the GP to ask for my Drop In The Ocean dose of pregabalin, which I started weeks ago but have been to afraid to increase, be raised from 25mg to 50mg. I have kicked against the ‘zombie drug’ for such a long time as I cannot bear the feeling of sleepiness, of tongue tie and head clouds, of my eyes drooping, my appetite dropping and my energy being zapped.

But, nor can I work under the circumstances that I found myself in last week, where I felt embarrassed every time I stood up and had to walk, where my role has been pretty much decimated. Quitting work is not an option, not least because I need the money, but also because I have worked so hard to have a career which has already been thwarted and slowed down by becoming a mother. I am not prepared to allow the ignorance and resentments of others to stop me from doing my job. So I have to make sure I can do my job as well as I possibly can, and be at work for as much as I possibly can.

And that means losing a little bit of me to medication.

Vacuuming Increases Back Pain. Fact.

Yes. Vacuuming your home increases back pain significantly. You would think I knew this by now wouldn’t you, having suffered from chronic lower back pain and leg pain for such a long time. But it appears I didn’t quite grasp the fact as well as I did this afternoon when I used the new Hetty Numatic Vacuum Cleaner for the first time.

I will give this Vacuum Cleaner it’s due, it has a powerful suction. So powerful that I couldn’t actually push and pull it as it seared pain down my leg and caused serious back pain right across my lumbar spine. And so powerful it rucked up the carpet. It did get most of the cat hair up, that our last vacuum cleaner struggled to do, even after vacuuming the same spot for 10 minutes. But, as well as the great suction it is clunky, heavy to move around, and very heavy to empty.

Don’t even ask me why I tried to empty it. Foolishness is the most realistic answer, but let’s pretend I have a brain for a moment and give a different reason – I wanted to see if I could do the whole shebang, you know vacuum, empty, put away…

…the answer is, I don’t have a brain. No, I can’t do the whole shebang. I now have severe acute back pain and leg pain and my whole leg is on fire, my foot is burning and tingling and numb at the same time and my back muscles have started spasming.

I have a feeling Hetty is going back to the shops as being completely crap. Summer Girl is going to be devastated. She chose the colour, which is pink, (because there is no gender stereotyping by the Numatic company is there?) and thinks that R should do the vacuuming so that I don’t make my back pain worse, and so we can keep our Female Pink Hetty Vacuum Cleaner. That’s probably as good a reason to take it back to the shop and buy a more back pain friendly model as the real reason of me having just screwed up my back by trying to do some housework with it.

So now I know. For absolute certainty, that even if I spot crumbs and whatnot on the floor. I cannot vaccum it up. Whether the Hetty Machine stays or goes, I suspect I am going to forever be the Nagging Wife following her husband behind reminding him to use the crevice tool and get the edges not just the middle of the floor. I suspect also that soon enough R is going to prefer me with acute back pain.