Thankful Thursday: At Least I Can Walk

I can walk, despite my pain being quite high today. My left leg, from buttock to hip to calf, ankle and foot is a combination of ‘on fire’ a cracking snapping pain, a deep hard pain, pins and needles, numbness and tingling. All at once. My back, which has improved is now hurting again, and I have upped my tramadol dose despite having cut down to 50mg per day. It’s not doing a huge amount for the pain.

I have been to town with my friend, and tried to walk the pain off. And although it made it worse,  I have seen people in wheelchairs, and a person with a leg missing, several people struggling on crutches. I am reminding myself today that despite my pain and feeling sorry for myself, it is all relative and there are so many people worse off than me.

I am lucky that I am able to walk, that I can move independently, even if it is slow and laborious it is still movement that is my own. I have all my limbs and they are all working, even if not all correctly. I need to stop looking back at what I did have, and concentrate on what I have right now.

So today I am thankful that I can walk. As this is more than many people can do.

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.

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.

 

“They Fuck You Up, Your Mum and Dad…”

“…they may not mean to, but they do.”  This Be The Verse – Larkin.

I worry a lot about how my chronic pain is affecting the children and how it will in the future. R and I try to keep the day to day stuff discrete – I don’t advertise taking my medicine and R and I discuss serious stuff, complication, future plans, possible surgery/not surgery and my fears in private, I try not to show when I am very upset. But this pain is all-encompassing. It is ever-present no matter what ‘phase’ I am in. At best, I am cautious in what I do, how and when in case I relapse, at worst I can’t do anything because I have relapsed and am in pain. And there is no way of hiding this from my babies.

It breaks my heart when I cannot get up off the floor due to a back spasm and Summer Girl helps scoop me up. When she strokes my hair after I have been sick and asks me what I need. Admittedly she has always been a compassionate and empathic girl. I suffered from Hyperemesis Gravidarum with both my pregnancies, and more so with my Winter Boy. My Summer Girl was just 3 years old, and would be rubbing my back as I hurled into the Great White Telephone. I would be unable to stop her as I was ‘busy’ and she was soothing and reassuring even then. But then it was different, it was always going to pass, there was always going to be an end to that difficult patch (and it ended literally the moment the placenta was ‘born’ I almost immediately asked for coffee and toast having not really eaten for 9 months) and I could explain that to her with certainty. I can’t do that now, although I lie and tell her it will most definitely get better, just in a little while.

I am less concerned about Winter Boy. I mean yes it does affect him, he can’t always have cuddles and sometimes I get cross when he jumps on me from the top of the sofa, or bounces on my stomach and I have to stop him. He understands that if he kisses my back it will make it all better, and tells me he is going to look after me. But in time, should this situation ever resolve, it will hopefully leave his memories for better times.

But Summer Girl, she is 6. She understands so much more. She as memories already and this is forming a huge chunk of them right now. Last week she went to school in tears on several mornings, in particular on Wednesday, my Dark Day when I had to crawl to the toilet and cried from pain and vomiting. She did not want to go because she was scared to leave me. And this evening, having again witnessed me vomiting she was hushed away from me by R while crying hysterically ‘mama! mama! I want mama!’ and crying that she does not want me to be sick and have a bad back any more, and even as I threw up I cried at not being able to stop it coming up, so that I could go and hug her and tell her it will be ok.

I cannot make this go away for her. And It might not go away at all, if surgery is not viable this could remain for a long time. Years. And what memories will they have? of a sick mummy, who they had to be careful around, who had mood swings and who did not do what other mummies do? I cannot bear that their childhood is being clouded by this. It dominates everything at the moment. It was never meant to be like this for them. This is not their future. No. I am not going to let that happen. I have to change it.

So, having been torn in many directions regarding medication, and pressure from my GP to take it, I am not going to take the Pregabalin prescribed today, the nerve blocker that is just as likely to send me into a zombie like state and struggle to function any day of the week as the other never blockers. I am not willing to put my children through another 4-6 weeks of me trying adjusting to it, and for the side effects to mess us up even more than we are now, and I am going to find a way to accept some level of pain, manage the ups and downs differently and Get The Fuck Over It. Somehow. I will resolve myself to adjust to this properly, emotionally. For the sake of my children. I will still have good days and bad days, but if I am not high on medication every single waking hour, then I stand a chance of the good days being really good.

And then maybe the children will have memories of their mummy sometimes not being well but always happy and smiling, determined and fun, memories of their mummy being who she should be, not this shell of a woman who is here right now. And maybe I won’t fuck them up too much.

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.