Saturday, 13 June 2015

Living With a Back Condition

Woman in bed, covered with a quilt, except for the eyes. Title text overlaid. I'm contributing my own post to our Hidden Illness series today. Something I've been wondering about doing for a while. A lot of the subjects I blog about begin with the same thought; 'Do other people feel this way?' I started this blog because I wanted to offer support to other parents by not being perfect. Because, to be a parent, you don't have to be perfect, you just have to try. You won't always get it right, but you do your best, and your children exist safe in the knowledge that you love them enough to always give them your all, even if sometimes it's a bit wonky or soggy in the middle...

Which is a tenuous link to the point of this post! I once buried a sentence in a post I wrote and never mentioned it again. This was because it was about a subject that divides people. It creates suspicion and doubt and can divide even the strongest relationships. Basically, I have a back condition. Two slipped discs in the base of my spine. It hurts. All the time. The trouble is though, you can't see pain. You can't even really describe pain, and I wouldn't want to. You see, what I really want is to be normal. To get up in the morning... actually yes, I would really like that; to get up in the morning: Without pain or fear of pain, or having to manoevre myself into a position where I can actually sit up, or (and this is a big problem for me) not laying there thinking; 'I would really love to get up now, because I love being up early, especially in the summer, but it already hurts, so I'm putting it off, and I can hear my son running around with his dad and everyone getting on with their day and I already feel like I'm missing out and it's only 7.30am!!'

Person Under Duvet

What frustrates me most about my condition is that it largely depends on how much I do. I subconsciously adjust my day. For example, I avoid flights of stairs, hills, that kind of thing and I limit my physical exertion, because I know I won't be able to stand the next day if I overdo it. I'm currently trying to clear my garden and I'm doing it one shrub at a time! That's the thing you see, I just want to do the things everyone else does. I won't give up, my dream is to have a 'proper' job, go out to work every day. Impossible at the moment, because I know I wouldn't be able to either stay on my feet all day or sit at a desk for long. I went to a meeting yesterday and it over ran by nearly an hour. I can just about manage two hours sitting still, although I will be in agony by the time I get home.

you can't see it and it varies enormously from day to day. This makes it difficult for the people who care about me to know how to treat me, because sometimes, I'm ok (well not totally, but more able to manage it), I can do normal stuff, like shopping, even cycling sometimes. Then other days, I'm exhausted with the pain from the minute I wake up, because it's been bothering me all night. I am very, very lucky in that I have an understanding family. My husband puts up with a lot and manages to hold down a full time job whilst doing enough around the house to make it seem as if I'm really a domestic goddess who's just a bit modest! My daughter has always been quite intuitive and generally knows when something needs doing. She is great at looking after her brother as well and this is more of a help to me than she will ever realise. Things that might not seem like a big deal, such as finding him bathed and ready for bed, are like an oasis in the desert for a back sufferer! I think they are closer as a result of the times they've shared, which is one positive outcome at least!

So, this is me. The me you don't see and it's about time I stopped hiding the fact. I am not lazy, I am not crazy, I am just a little bit broken. This year though, I have vowed to find a way to get better. Whatever it takes

Click the link to read a previous Hidden Illness post, about Narcolepsy.


  1. Aww Lucy - I can so relate with having ME/Chronic Fatigue Syndrome - the pain, the missing out on things. I just take each day at a time, really minute by minute.

  2. Having ME, and various injuries from an accident I am having trouble recovering from, and a daughter who also has ME, I can definitely relate. I suffer from a lot of back pain and it affects almost everything you do and makes you pretty miserable to boot. So frustrating.

    And I highly recommend osteopathy for the back pain - I have had to stop going since I had 4 spinal fractures but intend to start again when my body decides it is ready.

    Have you ever read 'spoon theory'?
    both my daughter and I use it as shorthand to explain when we can't do something -'sorry no spoons today'. A lot of people with chronic ailments use it - my daughter even had a friend send her chocolate spoons and another a bracelet with spoons on it. Means a lot when someone else understands.

  3. Invisible disabilities, such as when you don't need a stick, wheelchair or other aids to get around but are absolutely excruciating to live with are often met with disbelief and contempt by people because they can't visibly see what's wrong with you, the way you can with a disfigurement, impairment or other obvious disabilities. And the opposite way around, if you use a wheelchair some days and others not, you get treated like dirt because you're not in it permanently. If you get up even with difficulty out of a wheelchair in a shop to reach something (I can't reach anything above my shoulder height) you get tuts. So, it doesn't matter if I can't get out the house by myself, can't put my own socks and shoes on, but as soon as I try to do something out of the perceived comfort zone thinking of an onlooker simply because I'm using a scooter or wheelchair, I get abused. It's NOT alright to do that! All I am trying to do is take part in that thing called life. At home, hubster does everything. I can't pick my little girl up, the things people do and take for granted. In the Spoon theory which is spot on by the way, she describes each job as being 100 little jobs for every one job you do. Any able bodied person with no pain or problems can just go and get a pair of socks and shoes, put them on, grab the keys, unlock the door, go out, lock the door, go about their day alone or with friends and family, come back, have dinner, shower or bath and go to bed.
    I have to have someone with me to either do all that for me or help me do it. I haven't been out with friends this year. I've had one friend over for half an hour a few months ago. If I want to wear socks, I have to ask for help, because I can't grip very well and I can't bend enough to reach. I have to ask the person putting them on me to take extra care because my hips and knees are sore, and sometimes the action of putting them of jerks my hip. SOmetimes my feet are too swollen to try so I have to wait half an hour before they'll go on. Same for shoes. I'm not going to describe the rest of the day but you get the idea.
    Having someone else help you is at first immensely frustrating, especially when you used to do things yourself so easily. BUT as it goes on, you are less exhausted, less frustrated and and once you start using aids such as sticks, scooters and wheelchairs you'll wonder why you didn't use them earlier. Most of the time people are nice, you do get some ignorant comments but these are people who've never experienced regular debilitating pain or other chronic illness.
    I hope these people never do, I hope they never have to give up work or have a life changing accident because they too will become targets of hate and misinformation, mistrust and hate, on top of the problems they have.
    Lucy...Just ride it out. Rest when you need to, ignore nastiness and just feel sorry for their ignorance. If ever you feel the need to explain yourself when out and about, simply say "slipped discs" and smile while you imagine a pride of lions eating their faces.

  4. I know how you feel, I've had spinal problems for years. All the time my children were growing up, I missed out on so much from playing in the park with them to sitting on the floor reading or playing. I get so frustrated with myself & yes I do say Why ME!
    but I've just had my left knee done on Friday so although its still very sore, I know, or hope I, know that I will be as I want to get rid of my crutches, even though I know I'll still have my walking stick I will have a free hand to hold my grand childrens, or even my husbands. That will be a big step forward for me. Wishing you all the best hun. x

  5. It is quite hard to do that much routine work with this condition, having plates in spine, as you did before surgery. Injury affects our routine life because we have to live our lives with prophylactic fear and this fear ruins our day before planning. It is the situation in which clinical pilates can be quite helpful for the patient to have early recovery and pain relief for longer duration.

  6. I can so relate to this. I too have variable, hidden conditions. I have to confess I'm actually my own worst enemy because I refuse to pace myself too often, and I veer from getting cross when people expect too much from me to being all gung-ho, 'course I can manage' sort of thing.

  7. Margaret Abram15 June 2015 at 18:09

    It must be so frustrating to be restricted physically. At the moment I can't use my thumbs, which is very difficult. If only all parts of our bodies worked perfectly.

  8. It must be so frustrating for you. I have had back pain on and off for most of my life as I was born with a kink at the base of my spine. Sometimes it's almost OK, other times I'm squealing with pain every time I move as it causes Sciatica. I used to really struggle at work sitting in a chair all day as it caused so much discomfort and pain. Generally I don't sit down, I lie down on the couch or my bed instead because sitting just isn't comfortable and I get in pain - even lying down I can often feel quite significant pain like right now. I regularly push myself too hard because I have to to look after the kids and I do pay for it - some days are worse than others.


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