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.

My Letter to Father Christmas

Dear Father Christmas.

I have not kept my room tidy and have not always taken my medicine when I should, and have not always done what I have been told – sometimes I have carried heavy things, including my children, and last week I went down some water slides – and sometimes I have been angry and not controlled my emotions well.

But, mostly I have Been Good. I have been a Loving Mother, even if I have not done my share of the School Run. I have been a Loving Wife, even if I have not always shown it as well as I should have. Ok, I have been an appalling employee but I have tried my hardest to get there.

In fact, I have tried hard this year to be as good as I can be at everything I do and I have tried really hard to find a way to manage my back problems.

So, I only have one thing I would like this Christmas, please, if you can find it in that massive warehouse of yours:

Can I please have some respite from this back pain that means I cannot walk, or play, or help with anything, for Christmas Day? Just that one day would be fabulous. Right until Boxing Day Morning.

Many Thanks

Wine.

Disability Living Allowance – Biting the Bullet

I have avoided applying for Disability Living Allowance for a while, despite many people saying that as my lumbar disc problem is so debilitating I should do it. There are a few reasons – I have felt a lot like a fraud, as although a lot of the time I am in so much pain I can’t function, I also have lots of days where I can. There are people in a worse position than me. I have also felt I would probably not get it, as so many people worse than me struggle to be awarded it. I have been aware of the negative press that people who receive benefits get, and know some people around me who might scorn at me claiming financial help from the government they might not perceive I need, as well, I have a job don’t I? The form is long and I have been worried I will get it wrong, not be taken seriously, and now, with the new changes next year wondered if it was even worth it, I am nervous about having a medical, as it will typically be on a day I can walk fine. The biggest deterrent for me has probably been, if I am honest, the continued refusal to accept this as a disability, and continued thinking it will go away soon.

But, it is clear now that it won’t go away, certainly not any time soon. It is clear that I am entitled to it, that I need it now and that I may actually be awarded something. Financially we manage ok. We are not wealthy by any stretch of the imagination, we have no savings, but we can survive on our income ok. However, my disability has started incurring financial costs, and there are many things that we can do/get paid for that would make our lives so much less of a struggle when I am debilitated like I am right now. And if we actually have to face the worst case scenario, my husband’s job could be at risk if he continues having to take time off work to care for and the children. Oddly, his employment is more at risk than mine right now.

So, how will Disability Living Allowance help me? It will pay for a cleaner to come in twice a week when I am unable to do anything, such as this week, when R is at work.  It will pay for take-aways or meals in a cafe, which I did on Tuesday as I could not cook or clean up afterwards, and for the children’s school meals when there is no time for R to make packed lunches and I can’t do it. It will pay for taxi’s to do the school run when R works and I can’t drive and for after-school club costs when I can’t collect them. It will pay for our laundry when I cannot use the washing machine. It will pay for some additional therapy for me such as the Alexander Technique, Bowen Therapy. Apart from these last two ‘luxuries’ we are now having to do, or should be doing all of those other things as well as paying for my gym membership which I have to keep going to keep moving in the swimming pool (some people might see that as luxury, but without out, I would probably not be walking at all now). I could actually also do with putting a handrail up the stairs and a chair/rail in the bath (can you buy tasteful ones?!) It is taking it’s toll financially now, not hugely, but enough to notice.

I had a good chat with the School Liaison Officer yesterday about Bella, my fears of how this affects her, what support is, or could be available and she talked at length with me about applying for DLA. She said I absolutely must apply and that I must not talk about how I am on good days, but put my worst days down. I said I would be happy with just the basic level and she thinks I might actually get a higher level than that because on my bad days I can’t even get to the toilet on my own, and that this is a real disability, and this is now really seriously impacting on our lives, to the point it is now affecting R’s job.

I really don’t know what I’ll be entitled to, if anything – care element? mobility element? who knows, but, what I do know now, is, I have to give it a try, as it is there to help people who are feeling the financial burden of disability.If anyone has any advice on how to complete the form, please let me know! key words to use, things to remember to include, what is not important, and any websites that can guide me, that would be so gratefully appreciated.

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.

Thank you runawaycerbera…

I am writing in response to the fabulous post in ‘comments’ by runawaycerbera on my last post ‘my husband stabbed my leg!’ She has spoken about her own experiences with backpain in such detail, I felt my answer to her was so long and in turn detailed that it should be written for people to easily read. Maybe they will be more aware of how serious a lumbar disc prolapse can be, and what backpain and nerve pain might mean long term if we don’t address it, which neither of us knew before.  Luckily in runawaycerbera’s case it was not too late but for many people it is especially if they experience Cauda Equina Syndrome which is a serious form of nerve damage that can leave you with permanent parasthesia if you don’t get it treated straight away. Check out the NHS website for details if you need more info, it is a really helpful site.

I read everything runawaycerbera has said about the debilitating back pain and the fog it creates and it sounds just like me! I had the caudal injection into my epidural region of the lumbar spine in March, to stop sciatic nerve pain, which luckily for me worked, altough for only or two weeks and was very painful for days afterwards but at least it was not excruciating to go in, just a bit humilating with butt in the air (not even a friday ;-). I was told by neurosurgery team this injection is too random and often goes wrong and is rarely accurate enough to do good. Too late after it was done, although the osteo/gp who administered it advised it was 50/50 success. Funnily the numbness and pain I now have down my left leg is different to the pain I had in my right. The pain shifted once I started physio in August (yes it took that long to get a referral to physio) and started the intense exercises recommended by the spinal pathyway physiotherapist. I went from stooping badly and pain in the right leg, to standing straight with intense pain in my buttocks, thigh, hip, leg, foot. The prolapse is central so I suspect it has shifted in it’s prominence/increased it’s prolapse, as does the spinal pathway team. Or maybe another disc has prolapsed, that is quite common once one goes I have heard.

I so hope I don’t suffer as runawaycerbera  has done, with the bladder problems and in agony for so long, but I have had issues with ‘other areas’ that has been ignored and I am not hopeful I will be spared any of the anguish she has experienced. I was told by many people in the last few months, that I should have gone to A&E at christmas and again in June, instead of accepting that any movement would make me cry and that was ok. The emergency GPs felt it was not that bad, but they didn’t physically see me. If/when it happens again (it is very likely I have been told by the spinal pathway team) R and I have agreed, no calling out of hours doctors for more diazepam and extra tramadol or codeine, I will go straight to A&E.

I just feel that as I am walking and not in the serious acute phase, the medical teams seem happy that there is no longstanding damage. I worry that they will wait untll it is too late before it is sorted. It is not healing itself. It is not getting better. I am just managing the pain better by avoiding living my life how I want, and by taking a lot of drugs. I agree with runawaycerbera that I am not sure how much of my tiredness is drug related and how much is that I am so ground down, yes a lot of it is the drugs, but much of it is not. Like she said, I hurt so often, I don’t think I realise how much anymore.

I am very scared that I am never going to be me again, that I am never ever going to see an end, and that even the brief periods of relative pain-free existance is just a short term until it goes again and this is how I am going to live my life, in fear of the most horrendous agony I have ever experiened returning. It is worse than my experiences of childbirth and I say that having given birth to my son with only entinox as relief and having had a ventouse delivery with my daughter. I simply cannot bear the prospect that my once active life has disappeared forever, that my children see this shell of who I really am, that this is their mother. This is not who I want them to see as their mother, it is not meant to be this way for them.

But runawaycerbera you have given me some encouragement that it won’t be forever, that one day I may find someone will listen and remove the fucking thing. I will, without a doubt being making a trip to A&E at some point in the future. I hope like you, it is not too late when that happens, and the nerves has not been permanently damaged.

ok, that was a lot of me there. an outpouring shall we say! phew. thanks !

Something is Worrying Me.

Well, I never intended this blog to be so dam miserable. I do apologise. R said I should be careful not to be so bloody miserable people or else people will stop reading. I agree. But seeing as this is also a cathartic process for me. I need to get it all out. R is at work/buries his head in the sand when it comes to talking of the future. No-one in my entire world can probably bear to listen to me bang on about my back pain, and anyway ‘oh dear, poor you’ is Not Helpful. So I am going to moan away in my own words, in my own time to the www.

I am taking a ridiculous amount of medication. One of which is turning me into a goofball at night/in the morning. Despite being a walking pharmacy, my pain levels increase as the day wears on and by 5pm, I find walking too painful. My back, left leg/hip down to my feet, and both my calves and feet scream with hot pain, pins and needles when I sit from standing, stand from sitting. And I have not been being hugely active. I am not running a marathon. In fact for the last two days I have bee child free thanks to school and nursery. I have been careful but kept moving.

I am not at work. I have been off sick for almost 3 weeks struggling get my sciatic pain under control. Hence the nerve blockers. Since June I have been off sick more than I have been at work -when I was there I was mostly on reduced hours. My Boss is supportive. My colleagues are Fed up.

I am worried I will lose my job in the long-term, worried the long-term might be closer than I think, worried that if I can work will I have to reduce my hours for ever?  Can I work when I am a goofball? Will my colleagues now resent me? See me as unreliable, flakey, thinking about how much work I am causing rather than how I am? I have got no Get well card that is for sure. No kind messages of wellness. And we all know what lots of people think about colleagues with ‘back ache’ right? I have already seen my career damaged, having to put on hold a Diploma course that would eventually see a rise on the ladder. Is this going to ruin me completely?

So, I’m worried about Monday. I should be returning to work. I want to return.  I am scared of going back only to leave again because I can’t manage it, or do two weeks then it all goes wrong again. I am worried I won’t be able to get out of bed, and if I do I will be out of it on pain meds? I am worried I will just stare wildly at my colleagues, a dribbling mess while they make me a coffee. And then, I am worried my GP will sign me off again, and say I am not ready. I am worried I will tell her I am not ready. Because. Lets face it. If I go to work my day is going to be, wake up, zillion coffees, no conversation as I am too out of it. work, badly, home, lots of pain and somehow I need to be a mum then, sometimes on my own if R is working late shift. Can I even do that? Really?

I am scared of my future. I am a crap mum and I can’t do the job I have done for 10 years. The sadness I felt after being told I should avoid kayaking was nothing compared to the fear I have now of losing more than a hobby.

Tomorrow, I’m going to post something positive.

I Really Don’t Like Celery

I hate celery

I bought some frozen casserole mix, unaware that it contained, mostly, the most useless and vile tasting vegetable ever. Celery. Which is very unpleasant to eat, but which I could not bear to throw out ‘in case I ever found a use for it. And then, after a particularly cruel flare-up I Found a use. The frozen casserole mix became the perfect treatment for the inevitable ‘flare-up’ after stupidly pushing my daughter downhill on her bike or such foolish antics, the cheap equivalent of an ice pack, the new ‘bag of peas’.

And then disaster struck. After being used so many times and partially defrosting and freezing it again, it turned into one solid lump of mostly celery and is rather uncomfortable to lay on, thus rendering it entirely useless and consigned to the bin. I found this out today, after doing said foolishness, followed by hobbling around a supermarket a 4pm with hungry children and husband, then collapsing onto the sofa with the Mostly Made of Celery Casserole Mix, only to find I was akin to the Princess and the Pea. This Will Not Do. Unfortunately there is no other food in the freezer which we can sacrifice – we are using the baby corn tonight for the kids tea, and I am certain that Quorn sausages won’t be particularly comfortable to lay on either. Now I am laying on the cold space where the casserole mix once was, in pain and watching Abney and Teal thinking how useless celery really is. Contemplating not for the first time this week whether I should self medicate with a glass of Pinot Noir.