A Little Bit of Positive

After my miserable ramblings last night I have some good news. Well, I had that news yesterday but it did not feel so great at the time of my posting as I was wallowing!

Yesterday morning I got a call from the hospital, or rather their outsourced team, to offer me a short notice MRI on saturday (tomorrow). How about that! So, 9:20am and I will be thrust into a huge metal tunnel for 20 mins. I quite enjoyed it last time, gave me a chance to relax without children jumping on me!

It will take about 10 days or so to get the results in, and Mr P the Spinal Pathway practitioner has to then speak to the neurosurgeon and spinal orthopaedic surgeon about the results, so I am not expecting any appointments for at least a month. But, it’s closer than it was last week.

I am in a strange way, pleased that I am in the middle of an acute phase of pain as maybe it will show more than last time. I have been so concerned that they will do the MRI when things are more settled and it won’t show the severity of what I am experiencing. Mr P himself said it is better to do an MRI in the acute phase but due to waiting times it doesn’t often happen. He said the ideal was, an MRI immediately before it ‘goes’ and then an MRI in the middle of it all, and then one when it has improved, to get a good idea of what happens inside the spine area so, I guess this is as close to that happening as it will ever be.

I still don’t understand why no x-rays are being done, or CAT scans, as these show the facet joints and any damage there more clearly than an MRI and he has said there is some chance it is facet joint  related. If the MRI shows less than the pain suggests is going on I will insist on a CAT scan/X-ray. But, we are moving forward, even if it is at a snail’s pace.

Ode to Kicking This Shit

I wish I did not have back pain

I wish it went away

But it’s not going anywhere

It’s certainly here to stay

I think I’m finding ways to cope

and then it all goes wrong

I get respite but spend that time

waiting for it to all go wrong

I’ve had the most amazing christmas

despite enduring pain

but each morning I wake and fear

what that day will bring again

my days are getting harder

my world has changed and so

my life is never again going to be

the one I used to know

I have never had a year

with so many tears to fight

but I will keep going, I have no choice

but to fight this with all my might.

Why My Winter Boy Can’t Hug Me Right Now

My back has ‘gone’ for the millionth time. I am moving, but it is painful. R has just gone to do the rest of the Christmas shopping. My Summer Girl is happily colouring.

My Just 3 Winter Boy is in a happy, lovely, cuddly mood. But, he is not in a still, quiet, calm, cuddly mood, but the type that has him climbing all over me being a cat – he is twisting over my back, hanging off my neck and laying across me – normally it would be wonderful. But, right now I am having to keep asking him to stop and be still, and as he can’t, to sit next to me. He simply won’t stop.

I remind myself that this will not affect him negatively in the long term, but how can it not? How can he possibly understand that sometimes mummy loves snuggles and a little rough and tumble love, but sometimes not? It’s inconsistent. And yes I tell him it is because my back is feeling poorly, but he just does not understand that, or rather, yes he understands I have a painful back, but does not make the connection between that and jumping on me.

And it hurts me so much.

Two Steps Forward, One Step Back

I had an amazing Center Parcs Winter Wonderland Holiday last week with my family. It was just what I needed. I went down slides, ignoring the ‘do not go down this very fast slide if you have back problems’ signs, I rode a bike, I walked, I skipped, I felt better than I have for a Very Long Time. We ate lots of food, drank only a little wine (have gone right off it, oddly) sat in front of a wonderful open fire. The weather was freezing, producing a lovely glistening coating of frost over everything – very magical. We swam outside in the dark and fed ducks bread in the mornings on our patio.

I returned relaxed, walking normally, and everyone has commented at work how much better I look, how freely I am walking. I have been smiling, beaming ‘yes, I just needed to let go, I needed to stop worrying and just enjoy life!’.

So, with my upward positive attitude in tact, I headed off for a swim last night, and did 20 lengths, followed by the spa and a quick turn in the sauna. Brilliant, felt great.

At lunch time today I left work due to increasing back pain, and  the now regular flu like feeling that I get when my back is about to ‘go’. My boss agreed to get home and take meds to avert any major disaster.

I am now in bed, unable to stand straight. I just know that as soon as I stand straight, the searing pain will go through my back and legs and my back will, once again, be fucked. Excuse my language but that is the best word I can find to describe it right now. I now know the signs, and the tight deep pain along with the flu symptoms (my blood hurts) which seem to start in my back means only one thing.

I took my normal dose of 100mg slow release tramadol this morning but I don’t want to take another Tramadol through the night as I will be wired and won’t sleep so I have taken the dreaded 60mg Co-Codemol. Shame I have no diazepam left, which is what I ideally should take to stop the muscle spams in their tracks before they start.

Only yesterday I was skipping into work. I only had to do tomorrow before christmas leave, I am not sure I can make it to work for that final day

is this ever going to end? But on a good note, I have gone almost 6 weeks without a proper relapse, which is a good amount of time.

Spinal Surgery Update

That is an exceptionally boring title isn’t it? I will change it when I think of something dazzling.

I had my Spinal Pathway appointment yesterday. This is an assessment appointment to determine if spinal surgery is an option. I saw this same man, Mr P (he is a senior practitioner physio something or other)  in early August this year, and at that appointment he was clear that surgery was not an option based on my MRI results from May 2012. His view was that a discectomy (where the offending bit of disc is removed to free the nerve) would not help as the prolapsed disc didn’t appear to be touching a nerve, and that spinal fusion is a last resort, end game situation, where I am nowhere near yet. However, he also agreed things were not right, which suggested that the MRI is now out of date and things have moved on somewhat since May, and he would review this decision in two months (yeah right!). The deal was I did aggressive physio first to get me standing upright. So, I completed physio which indeed saw me standing straight again after much pain, but the result was also an sharp increase in sciatic pain and numbness and transferred largely from my right to my left leg.

After much drama with nerve blocking painkillers, getting past a GP who felt I should be able to continue as a Zombie for the rest of my life over spinal surgery, and over 4 months later, I was back where he promised I would be, in his Office, discussing my continued and worsened condition. And this time he had a completely different opinion, following intense examination and concluding I have calf muscle wastage and significant leg weakness due to what appears to be nerve damage. No Shit Sherlock! He is not exactly telling me something I didn’t know. But, I didn’t realise I had such issues with standing on tiptoes using my left leg – that explains I fall flat on my face when doing aeroplane pose after wobbling all over the studio first in Body Balance.

A full and frank conversation ensued, and some tears from me, him telling me that if sometimes peoplg go through a few years of debiliating pain and the good news is that by the time they 50, the disc will be so disintegrated there is no more pain and the vertebrae will (sort of) fuse on their own (I have heard differently but hey ho). But, Hang On a Minute I said. My daughter will not need to be taught how to ride her bike when I am 50. My son won’t need comforting with cuddles in the middle of the night when I am 50. If I carry on like this I won’t have a career left when I am 50, and maybe not even my lover to please.  I don’t want to wait until I am 50. I want to live my life NOW. Cue more tears.

So after dangling the carrot there and baiting me with my potential fate, he finally informed me that I am now a suitable candidate for spinal surgery, and following a new MRI, I should expect several different surgical options to be discussed, as there are two different factors to my back problem, one is neurological (nerve related) and the other is orthopaedic (bone related, or ‘mechanical’ as they refer to it):

1. Discectomy – to remove the prolapsed (sticking out bit) part of the L5/S1 lumbar disc, if it is indeed prolapsed (it could still be ‘chemical pain’ causing the sciatic pain and back spasms, but chemical pain is less likely to cause numbness).

2. Spinal fusion – to stabilise the vertebrae which keeps ‘popping’ in a similar way that a knee with damaged cruciate ligament gives way. He admits he cannot see another alternative to spinal fusion to fix this problem. Except. Oh Hang on! There is! After I questioned why we can get a man on the moon but cannot replace a vertebral lumbar disc, he announces that this can be done, and is being done, and on the NHS. But not at that hospital. He was extraordinarily reluctant to discuss this in detail, only saying it is as risky as spinal fusion in terms of success and complications. But, this is a whole other blog post that will be written.

3. Possibly (probably) both the discectomy and spinal fusion. As the problems with my back are two fold, one is unlikely to fix the other.

So I now need to wait for another MRI, sometime after Christmas, probably 5-6 weeks away, followed by 10 days for the results, plus another 2 weeks for the results to be discussed with neurosurgeon and orthopaedic surgeon. So, despite this progress, it will be another few months before I can even discuss spinal surgery, let alone be put on any kind of waiting list.

And the advice on how to manage my condition until then? Don’t Give Up. This man is wise.

Lost. Series 1 Million.

I have been lost with the direction of my blog for a little while. Coinciding with the whole ‘why do you blog?’ discussion which has generated a lot of thought-provoking posts, and the revelation of how my lumbar disc came to be in such poor shape, I saw myself plummet into a vicious cycle of back pain and puking which I struggled to break. Hovering on the brink of hospitalisation and continued dilemma about whether to take yet more nerve blocking, brain numbing medicine, I have gone through turmoil mentally and physically and found myself with so much I wanted to talk about on my blog, yet struggled with words to write it all down. I think this may a classic case of Writer’s Block, although possibly Writer’s Overload is more accurate. So, I said nothing. I could not even find the words to respond to the great Blog Hops and Memes I have been asked to contribute to.  I have broken the cycle and am back on track, but my blog has been neglected.

What is the point of my blog? Honestly, I am no longer sure. I had wanted it to be an outlet for my thoughts, fears, pain, struggles with parenting. But also to maybe be a place of sanctuary for others who suffer with chronic pain, to reach out and know I am not alone, and to tell others they are not alone. To provide useful information that may help others who are starting to bang their heads against the colossal brick wall that is the medical world, the brick wall of ignorance and confusion that is spinal care. To drink wine and vent my frustrations with this horrendous place I continue to find myself locked within.

Have I achieved any of it? My first response is ‘No’.  But then, thinking about some of the things I want to achieve, actually, yes. I have met with some fabulous people, some who have never experienced chronic pain yet place themselves in my shoes and offer support and encouragement. I have met some brave, courageous people who have been in my shoes and are coming out the other side, and have been willing to share their stories with me and give me hope for my own future. I have gained a huge amount from it.  However, I am not sure that I have offered anything back, I have taken, but not given. And that feels very one-sided. It is not what my purpose was, I know that much.

The purpose now? I need to think. I am Lost. Once I find some order to my thoughts, maybe I can start to write them down again. I am going to write less, and read more.

 

Maybe Wine CAN Cure Back Pain…

I am often described as forthright, activist minded, quick acting, decisive. I am also sometimes described as impulsive, hotheaded, impatient, bull-at-a-gate-post (my mum loved that expression). I am all of those things. Often, they get great results, but sometimes you can’t sit around having committee meetings to make decisions. Sometimes, you need to be decisive and just get on with it. R and I are quite different in this respect. He likes to chill out, have a cup of coffee and a chat, forget about, return at a later date, and talk some more, but when it comes right down to it, struggles to make the decision. This is one of the ways we are very compatible. He helps me slow down a little and encourages me to take time and think, I speed his actions up and encourage him to make decisions (or, make them for him).

I have felt uneasy about how much medication is running through me and for how long and continually seek alternative ways to deal with my pain. I worry about how much damage diclofenac is doing to my insides and my joints. I worry that my emotional wellbeing is being eroded away by artificial chemicals that have forcibly increased my ‘happy chemicals’.

I have never been an adrenaline junkie or a seeker of drug highs. I like to be in control of myself, of how I feel, how I act. This has become more and more noticeable as I have grown older. I don’t like things being ‘done to’ me, I need to be the person at the steering wheel of my life. I am happy to have some-one map reading, but I have found, in relation to pain medication, the medical profession are pretty hopeless map-readers, they can have people driving around in circles.

In this decision I have just taken, my cautious considering husband is fretting, as my impulsive (decisive) mode had engaged. Although in agreement it needs to be done, it does not sit well with him, but even he knows that these chemicals cannot be good for me for this long.

So In the midst of a reoccurrence of back pain I have stopped both amitriptyline and tramadol.  It was not a deliberate act. well, not completely. Last week I stopped the nerve blocker so I could drive and stop walking into things, this week I threw up for so many days I could not take my tramadol doses and chose not to start it again.

My GP sort of knows I have stopped the tramadol, but, temporarily only. She has prescribed me codeine instead as I prefer this for acute pain, but hoping it will help with the withdrawal of the opiate side of the tramadol at least and I can reduce this easily (i hope). Just not the double serotonin drop. I have been reading about the experience of others in withdrawing from Tramadol and it takes me right back to my whole reason for not wanting to start it.

To say I am not scared would be a lie. The next few weeks I suspect are going to be very tough. I am actually now just waiting for the withdrawal anxiety and restlessness and angst to kick in. I have not read One Single positive story about withdrawing. There is Not One Person in the ‘net who has got away with it lightly. So there is absolutely no reason I will escape it.

Crazy I hear you say. And you are probably right. And, if you are in my position, please please don’t copy me. See your GP and do it properly. Like I explained at the beginning, I am hotheaded. I don’t want to be persuaded out of it by the GP, or have to titrate down and just prolong the inevitable agony. Now I have made my mind up. I am going to do it. I have to do it. I cannot be a prisoner to this awful medication any longer.

I will manage by exercising (when I am over this acute phase) I will have saunas at the gym to help me detox. And by eating. I have lost my appetite for so long I have lost just over 1 stone in weight. YEY! some might say, but I only weigh 8st now. I miss food, especially as R is a trainee chef, that is Not Good.

And, I will always have a bottle or two of Pinot Noir waiting to help. I think I am going to need it.

Blown Away by Hope and Pain.

There are two parts to this blog, as technically this computer has been confiscated by my husband so that I can listen to the audio book he has downloaded for me, and so I can fully rest my back.

Firstly, Wow. The power of Mumsnet is two fold! Not only has ‘Doogie Hower’ in disguise found the cause of my back problems but, how many people have come to check out my post! and have left me some amazing supportive messages. And yes, the more I think about it, the more I can feel the place where that oddly large and painful but quick to disappear from my memory bruise was. It was right in-between my vertebrae at the base of my spine. Now I remember, and have discussed with R, neither of us have any idea how it escaped our memories. It just demonstrates how easy it is to block very important details from our minds.

There is no doubt in my mind  now that the unfortunate event of the shower curtain caused my slipped disc. But, I know many people are thinking, as R did, ‘so what?’ and as someone commented on my last post ‘you can’t un-salt the soup’. That is true. This revelation does not fix my back. It won’t change the treatment offered. The damage is done and it is going to take a long time to fix, whatever the cause. Perhaps had I linked it at the time it might be a different story, but probably not.

What this does change is how I deal with it, emotionally, in the long-term. It gives me hope. I was told by several medical professionals that this is likely degenerative. It has happened over a period of time and the disc is disintegrating. This has put a little pressure on the discs above. And, as it is degenerative, it is likely this will progress upwards in time. This has been the source of great angst for me, as many of those who have journeyed with me over this last almost-year know. Coming to terms with the loss of so many things in my future. Having to find a way to parent so this debilitating condition does not hugely and negatively impact on my children’s upbringing. I have had so many tears of worry that this might end up crippling me. I have seen my career disappear in front of me and seen my relationship change and become damaged in front of my eyes.

This means, that maybe there is a chance that won’t happen. This means that if I can get this disc fixed, that it might not spread upwards, that it is not degenerative, that it is not inevitable that my life will be a continued cycle of pain and medication. Hope.

Alas this leads to the second part of my post. At the time I should be revelling in this fabulous news (and believe me I have been blown away by it) and seeing this as a new episode in my life, where I can go to work with little pain feeling this is actually progress that might stay, instead of walking with a swing in my step, I am in bed in pain as my back has gone again and I can’t stand or walk.

I have been throwing up since sunday, (for those who have an aversion to vomiting stories, read on, there will be no details) and now I am unable to walk for pain and muscle spasms. I have a theory about this, about the links between my pain and being sick, but that is for another time. For now, having had to crawl to the toilet on my hands and knees I am in so much pain I am going to return to the excellent audio book The Name of the Wind by Patrick Rothfuss for those who want something cool to listen to.

But, this is not going to beat me now. Not anymore. I am not going to just accept my fate is out of my control, this is not my destiny to have a back problem, it is not genetic, or degenerative. So I can overcome it. After some sleep.

(ps Thank you everyone for reading my blogs and for ‘liking’ and for the lovely comments. It means a lot. Even with a little nudge from those at the top.

My ‘Slipped Disc’ Cause was Discovered by a Mumsnetter.

I have been a ‘Mumsnetter‘ for many years. There. I have said it aloud. I don’t normally advertise it by shouting from the rooftops but there are probably certain behaviours that might give it away. You will find me charging across the busy supermarket to retrieve the BOGOF Fruitshoots that R has put in the trolley, I was an avid breastfeeder and yes I would get my norks out in public to feed my baby (and, shock horror! toddler), and no I wouldn’t cover myself in a huge shroud to hide it, I am proud of being a woman and a supporter of girls being girls not sexualised mini-adults. Now I suspect that those traits along with my other ‘mumsnet outing’ traits were always there and that is why I am a mumsnetter, although to some extent I probably have a little more confidence to voice some of my longstanding views than before. Some people might argue those traits exists simply because Mumsnet has influenced me.  Of course there are some things I do which are directly as a result of my membership of the Clan of Witches as my husband calls it (or ‘The Oracle’ when he is being nice) such as being so bold as to say ‘did you really mean to be so rude?’ to someone who has upset me, or ‘accidentally’ leaving my shopping list in the trolley at the end of my shopping, with items such as Naice Ham, Pombears and Grapes on it.

But, regardless of how much influence and when, there are some times when credit has to be given completely and utterly to the women (ok so there are some male wannabes but it is MUMsnet and not PARENTsnet) of this outspoken and sometimes controversial network. And this is one of those times. And there is one particular Mumsnetter and well-loved blogger who has my thanks today and possibly for a long time to come – DILLYTANTE.

She casually asked me today if I was the person who had an accident involving a shower screen. And yes, that was me. I kid you not – a couple of years ago I was kneeling under the bathroom shower screen as the bath was filling with bubbles for the children. My daughter had unknowingly pushed it across so she could lean over to swirl the bubbles. My son was standing to the right of me, I was undressing him. I stood and lifted my head, full force up into the shower screen, the force so hard it pulled it out of its brackets, the corner of it cutting into my scalp. It toppled forwards, edge hitting the sink in front which broke into several large pieces, one of which flew and hit me in the face, breaking my nose and cutting above my eyebrow. I did not feel the warmth of the blood trickling down my face or the throbbing of my now slightly more crooked nose. I was terrified that my son or daughter was hurt. Bella was screaming (because she could see the blood) and I was screaming because my son lay on the floor. Luckily, that was because I had pushed him and he was completely unharmed. Bella had a small cut on her little toe and apart from being shaken was otherwise unharmed. I have no idea how this very odd and scary turn of events did not hurt my children, but I know as I got them out of the bathroom to tend to my bloody face that it was not short of a miracle that it had missed Roo by a whisper as he was so close to me. I dread to think what it would have done to him. And so I was thankful for my broken nose.

Two years and one month on, and DillyTante has reminded me of something. Yes, I said, that was me. Was that the cause of your back problems?  No, I said, not related to my back. And then I remembered. I thought about that event, and I remembered. As I remembered part of the event that had slipped from my memory, the jigsaw pieces fit into place. As the shower screen slid down me after hitting the sink, I was still bent over, the sharp corner of it landed on the base of my spine, leaving a small cut and an enormous painful bruise. I was so caught up with the overwhelming relief that my children were ok that I did not think about it again. Nor did I remember mentioning it to the doctor at A&E when I had my wounds seen to, worried about my broken nose, although R was certain I did, and as with most other discussions with professionals, not taking seriously.

And nor did I think about it again 8 days later and 2 days before I was due in hospital to have my broken nose straightened, when I picked my 10 month old son up from my bed and the first wave of searing agonising pain shot through my back and legs. This was the start of two years of regular bouts of debilitating back pain. I did not link this completely devastating pain to the healing bruise and cut on my back, as I dragged myself through the corridors of the hospital on the day of my nose operation, stooped in pain and high as a kite on valium and codeine that had been prescribed over the ‘phone by emergency doctor (when I told him I was having to try and wee in a potty as I could not get to the toilet).  The hospital gave me a reclining chair to sit on and gave me my 4 hourly doses of this medication to help me cope with the pain while I waited for hours in agony from my back muscle spasm, so that I could actually make it until my operation.  I had my nose straightened and home for several more days in bed, battered, bruised and in pain. I did not put those two events together as I did not know then what a slipped disc really was, or that I had one and did not link the pain I was now experiencing with the isolated pain of a bruise.

And this bruising and cut on my back was never thought of again. Until DillyTante made the connection with her clearly amazing memory. How could have I forgotten it? I ran downstairs to gush this revelation to my husband. ‘ok’ he said ‘does it really change anything?’ Helllooo! Not only do I now remember what has triggered it, but it has always been assumed that this back condition of mine is degenerative, as there has been no known injury that could have triggered this. Except. Now there is a very likely injury. Central annular tears (where the outer disc crust has torn dead centre rather than to one or other side)  are not very common, unless by trauma force injury, so it is entirely probable that this was caused by the shower screen hitting my lower spine with force.

That means DillyTante that this might not be degenerative. And it changes a lot! And, once again it re-enforces the power of people who come together across the miles through forums and blogs. A blogger and Mumsnetter can remember something I have long forgotten, that is pretty incredible, and may well change the fate of my future.

What Am I Doing Here?!!

Honestly? I am wondering why I am here. And how the hell do I actually do this? I have a lot of words to write down but I have no clue about blogging, the format, how to make it took pretty, how to get people to come and read my blog, how on earth to make it not look childish and messy. There are so many talented women out there. How can I be even vaguely like them?

I came into the world of writing and blogging by accident, to talk about the pain and frustrations of a torn lumbar disc and other issues relating to long term back problems, to cure boredom in the lonely evenings while my husband works unsociable hours and my friends have other things to do that listen to my durge. I thought ‘I can do that if others can’. I  had an air of grandeur about me then, I felt great, I was going to be amazing. I was flying!

And then I crash-landed. I am now doubting myself,  feeling foolish, feeling dumb. Every time I see other blogs, I don’t see inspiration. I see things I can’t ever do. I look at my musings and it seems silly, ridiculous, a non-starter.

Perhaps this is the frame of mind that suits today. I will try again tomorrow.