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.

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Taking Control Back: The Expert Patients Programme

This week I have been pointed in the direction of the Expert Patients Programme which is a free self-management course run by volunteers who all have a chronic condition of some kind, for patients who have a chronic condition of any kind. It is a 6 week course of 2.5 hours per week in a group setting and provides structured support and real strategies for coping with the impact of chronic conditions, increasing confidence, learning coping strategies, dealing with relationships as well as meeting other people with chronic conditions.

The first person to tell me about the Expert Patients Programme was a friend via Facebook as I moaned about the length of wait for my various hospital appointments. Because I have moaned to everyone about it. A friend who has a chronic condition and said despite not completing the whole course, he found the sessions he attended useful in managing how he coped with coming to terms with his condition.

Almost immediately after, and completely separately, a very close friend of mine emailed me to say she had actually spoken to the manager of the local Expert Patients Programme which is run from the local voluntary guild (of which my friend is the ACO), about my condition and also that I am a trained group facilitator myself. The coordinator has lent me the workbook so I could take a look at the course structure before deciding whether to do it or not and it looks well structured, thorough, and informative.

One of the things that appeals to me about the course is that it is run by fully trained volunteers with their own chronic conditions, and thus able to support from a personal understanding as well as being trained to facilitate learning in a group setting. I also like that it is in a group setting. There is going to be a wealth of knowledge, experience, information and support from this type of group, with people who know, who are there, who understand what it is like to never take a break from pain and who want to take control of their lives once again. I am already, ironically, a group facilitator in a cognitive psychology based area, which in essence is what self-management is but I work with people who are largely not ready to take control of their lives, and so know how important it is to be ready to do courses like this for them to succeed and the idea of being able to use my own experiences to share with others and help others has piqued my interest.

I am quite a thorough person when finding out about informative aspects of my condition – ways of coping, medical information about what is going on in my back, practical techniques, and medicines, but, what I am not so great at right now is emotionally coming to terms with the impact of chronic back pain so the support that a group like this can bring, and that I can bring to others appeals to me.

It’s funny because when I was first struggling with the pain and devastating impact of this condition, namely being told by an osteopath that I should not kayak again, he suggested cognitive therapy. But, he talked it up (or down) as being that much of my pain was psychological and that I needed to get to grips with it emotionally. My instant reaction was ‘fuck you I am not struggling emotionally’ and I walked about, did not return to see him again. To be fair, he was a tosser of the first order and did nothing practical after his initial correct diagnosis other than delay my treatment and make me feel like I should Just Get On with It.

I am not sure if it is me that has changed my own perspective in the last year, or that this course has been presented in a much better way, but, I like the idea of seeing myself as an Expert of my own condition, of taking control back, and so I am not seeing this like some counselling session to ‘come to terms’ with my condition, but one where I become myself again. Unlike those I work with, I am now ready to take control of my own destiny.

I have also read about being a volunteer myself, and yes I know, got to do the course first and learn to be that Expert myself before teaching others, but, I already want to be a volunteer. My friend clearly knows me well as she has already told the manager to expect me to end up as a volunteer!

So, I am going to find out when and where the next Expert Patients Programme is, sign myself up for it and I will post my progress on the course and any useful tips I learn on the way.

If you are interested in finding out about an Expert Patients Programme in your local area, you can either contact them via telephone or email, details on their website, or you can read more about it on the NHS website detailing specialist services available. 

It’s worth mentioning that there is also a specific Back Pain Management course run by the NHS, which I may be offered through the NHS hospital lead Pain Clinic, which will teaches specific skills relating to my back condition, but to use this as a tool alongside other treatment, and when I have more information about that I will post details. In addition to these courses there are other courses available for specific chronic conditions such as diabetes and arthritis.

“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.

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.