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.

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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.

News Just In: Jägerbomb Cures Back Pain

Last night I Went Out. I didn’t go to Sainsburys without the children, or to Toys R Us for last minute birthday treats, or to fill the car up with fuel, or to a friend’s house for tea to socialise our children with their children. Nope. I Went Out To a Pub. And THEN I Went To a Club. I Got Too Drunk. I Danced (ok, I sort of shuffled like, well like a 30 something pissed woman with a bad back). I Got Home Too Late. And Today I Am Hungover.

It has been so long since I have been out for a dance. Certainly not with a bad back that’s for sure. I knew it would be painful today, but actually, I cared very little. Jagerbomb anyone? I suspect there is always going to be a pay-off when I go out as today my back is a bit delicate, and my left leg is firing pins and needles like crazy and my numb patches have increased. But, it’s not like I am going to do this every week so I can cope with that sacrifice, because for a tiny little bit of time it felt like I didn’t have a bad back.

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.

Medicinal Spa Pool Recommended by GP

I have had a very unpleasant week. My back went into spasm again last week and coupled with significant vomitting for much of the week I was quite a mess – in pain, could not eat or drink anything, couldn’t take my medication of any kind for much of the week. Let’s not do details, but the short of it is, as well as being in horrendous pain and unable to stand straight, I also struggled to <ahem> take a shit. The medication, along with pain, and not eating much had basically stopped my digestive system from working. It is all sorted now but the week and in particular the end of it was actually quite traumatic. My GP said taking a laxative was like taking a sledgehammer to fix the problem. And she was right.

Today, post traumatic stress induced me has been signed off work for a further two weeks. Again. After managing a wonderful 2 weeks at work. My GP told me to ‘forget about work’ for the time being (not for the first time) concentrate on myself. Luckily I get paid full sick pay but that is not the point, I want to and need to be working.

So, I am going to the gym, to walk the pool and keep active, and then to sit in the Jacuzzi until I am wrinkly. I told my GP this and she said this was entirely recommended that I need more than anything to relax myself and that will help with the pain. She suggested doing it daily. I wonder if I can get it on prescription?

I had a conversation with some lovely people on Mumsnet yesterday about keeping reserves so that I have something to fall back on when things get bad. I was given a link by one of those people who herself suffers from chronic debilitating back pain about the Spoon Theory. If you have not heard of it, take a look. Work is a task that cannot take one of my spoons at the moment as I don’t have that many in my hands, but the spa, right now can take that spoon.