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We want to hear from you: please tell us about your experience of the online community.

Dealing with back pain

Bloggerbar

Barbara is a successful blogger who writes about back pain, she has also released a book. Today she is giving the community tips as well as how she has benefited from writing.

Hi, I’m a 65 year old with two married children and a ‘grandog’, but hope for grandchildren at some stage. I took up blogging in 2007 and haven’t looked back since.

They say back pain affects 80% of the population at some point in their lives. Mine, started in my late 20’s with extremely debilitating low back pain. Treatment in the first few years consisted of physiotherapy and manipulation by an osteopath and chiropractor, but eventually surgery was the only option. It was my fourth operation and two life threatening incidents that soon made me realise that time is a gift.

Many a day I’ve felt despair, rage and profound disappointment that I could not do certain jobs. I looked like a question mark, bent like someone 20 years older. I felt like an object of pity, an old woman in black. Pain is introspective, it doesn’t give a damn about the rest of the world.

Then I took up writing a blog, I can escape into another world with my blogs. I write several of them, but my ‘Back Pain Blog’ is the one that I am most passionate about. I have awards for my ‘Back Pain Blog’ and I have been nominated for a Wego Health Award this year. I have made lots of friends through writing blogs and I truly think that ‘blogging’ should be included in the list of therapeutic therapies for chronic pain.

The simple act of writing my thoughts down filled me with a sense of purpose, to pursue my goals. I would read inspiring stories of people working from home and knew I had the ability to do something with my life. I have no paper qualifications, no special skills but a notion that I could write. I constantly scrutinized magazines for ideas and inspirations on what I could write about.

I love writing things down and have kept many a diary. Some diary entries would make me laugh with one such entry being this: ' Monday 21st January 01 – I really am lousy today. I don't suppose I can blame the discs in my back really, after all for the last 50 years they have been in the same place, at the bottom of my spine doing its job but today everything hurts. My chest, my neck, my arms, my bum. I hurt every inch of my body like I didn't know hurt could hurt but hey ….. the good news is I've lost half a stone. Maybe the power of positive thinking does work after all, or maybe it’s just my morphine kicking in'.

I took on numerous home-study courses on ‘pain management’ so that I could understand my body from top to toe. It has been a long, tedious and at times an expensive journey for me over the last thirty years to research and find help for my pain, but thinking positive is something I have always tried to adopt.

For me now, my pain is controlled by juggling with a gambit of drugs and injections as there is nothing else they can do (surgery wise) to help alleviate my pain so it’s down to me to pace and maintain it the best way I can. The surgeon who performed my first spinal surgery over 30 years ago said I would be in a wheelchair by the time I was in my late 50’s. I am now in my mid 60’s and nowhere near ready to end up in a wheelchair.

I must have a daily afternoon sleep to help me get through the rest of the day, but I don't mind. I've made my bedroom into a sanctuary just for me to enjoy (hubby doesn't mind) and after a couple hours of rest, I'm like a new person. I think one of the hardest things to deal with apart from the pain is the perpetual tired feeling which makes things more difficult for me, many a day I could go back to bed at 11am but I try to wait until after lunch. A healthy body is less susceptible to stress and the best treatment to help my pain is to channel my energy into my body to produce endorphins.

Why don’t you have a go at writing a blog? It’s completely free and there are numerous free online courses to explain how to get going. I personally use Wordpress for all my blogs and would highly recommend this platform.

Can you relate to Barbara's experience? What advice would you give? Let us know in the comments!

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Comments

DavidJ

Hi Barbara.
This is my first attempt at telling someone outside my immediate family what's going on with me .
I am sat outside in my pergola at 1:14am because my bungalow is too warm !
I have just clicked onto Facebook and discovered Scope and therefore yourself.
Your blog fills me with admiration at how you have managed for so many years!!!
Although I am in pain 24/7 I can think back to a time when I was very fit and healthy.
So healthy that I joined the Army and spent many years being an action man! All that fun and enjoyment and travel came to a grinding halt in June 1979 . I was on a training run with my troops when I slipped and fell and I knew something was wrong straight away . I had had an aneurysm but didn't know at the time . I was abroad and was evacuated to a UK hospital for treatment.
My career was finished and after time in hospital and recuperation I was given a desk job . (Boring)
So I left the Army after 20 years with a legacy of permanent daily headaches.
I managed to find work but it was difficult and eventually I had to leave. Fortunately at the time (1984) I was reasonably comfortable where money was concerned until my wife decided she couldn't cope and left.
I was left with 3 children to bring up which I did and I started again.
I had various jobs and managed to buy my house and had a decent job and I stayed single
One evening in October 1998 I was driving on a road I had been on many times when I was cut up at a traffic light . My car hit the other car at 30mph and I damaged my spine and neck . I was off work for 6 months .
When I returned I had been demoted!!!!
On the 16th December 2000 it happened again.This time a car hit me from behind and my driver seat snapped and pushed me under the steering wheel . Despite not breaking any bones I have never worked again . I was 6ft 3in tall and now I am 5ft 10in . I have the use of my arms and legs but walking is very restricted. I was really ill this time and during my illness I was left alone to cope. I lost my house my car and my job although I had insurance to cover it by the time I became compus mentor it was too late. I
I now live in sheltered housing . I have an EPV to get around and a motability vehicle
I live in permanent pain with several ailments but gotta keep going !!
This is the short version but the first time I have ever written in down .I hope this is acceptable for you
Kind regards
David Wrighton
Age ****

Bloggerbar

David, I am no hero in comparison to you and all you have been through. If this is the first time you have written it down I would love to know how you felt after writing it?
Writing it all down can relieve stress that you have held back for a long time and I really hope this is the case for you.
Good luck David and a massive pat on the back for being such a strong and positive person when your life has been changed completely.
Have you ever thought of writing a book or a blog on your life? I'm sure it would inspire many others. Take care and thanks for commenting. Barbara

Pippa_Alumni

Hi @DavidJ, and a warm welcome to the community! Thank you for sharing this with us- as @Bloggerbar says, writing things down can be a huge help. Do get involved with the community and if we can be of any assistance, just let us know.

elly9

I really don’t know where to begin but I will give it a try at some point

Bloggerbar

Elly, it's as easy as writing on here. There are lots of free downloads to show you how to set up a blog for free. If you get in a mess then just contact me and I will try to help you. Good luck

nattie48

I've had problems with my back since I fell in 1989 when I was 19, I was in work and I slipped on water. I was off work for 2 weeks with back pain and when I went back to work I was able to carry on but I knew there was a weakness there. I didn't have any problems with my back until 1996 when I was pregnant with my 2nd son. I was fine one minute, no pain at all, but the next minute when all I was doing was walking my legs became stiff, I was having problems walking and I began to have pains in my back. I ended up in hospital that evening and I had a few more visits as a result of my back 'going' as I say. I was taking painkillers every day for the pain and couldn't wait for the pregnancy to be over and done with. Once I had delivered my son the back pain eased off, there was always a weakness in my back because I could not carry my son in a baby carrier so one of my friends use to do it. I still had occasional pain in my back which use to result in me being off my feet until the pain eased off. In 2001 I became pregnant again and the baby was due March 2002. I was sitting down one afternoon, chilling before I got ready to go to work when I had a familiar feeling in my legs and back, the date was 11/09/01, obviously I'll always remember that date as I was watching everything that was going on in America on my tv. That was the start of the problems with my back, again I was in and out of hospital, this time though the pain was really bad, I had problems walking this time and had to finish work early. I ended up having my daughter 2 weeks early as well due to the amount of pain I was in, every time I went for antenatal appointments I would end up crying. The pain eased off again and only came back every now and again but usually once a month. I found out I had a tilted womb and that was why I was in so much pain while I was pregnant. I ended up having an hysterectomy in 2006 and it was like a miracle, the pain completely disappeared until 2012 after I slipped down the stairs. I had to have a week off work but the pain never came back until last October 2017, that was 9 months ago and the pain is getting worse and not easing off at all. This time the pain is chronic and causing me a lot of problems, I'm housebound, I had to give up driving and I'm taking morphine tablets for the pain. I'm a qualified nurse and I've had to give my nursing career up. I'm currently claiming ESA and PIP and have been classed as disabled. I use a walking stick to walk around my home and I use a wheelchair to get around outside. I've found that some of my friends think I have given up and don't bother coming to see me at all. I've found out recently that I've got fibromyalgia as well which doesn't help the pain in my back. I'm getting fed up with my friends saying that I need to push through the pain, they don't realise how much pain that I'm in and how it affects my walking and day to day living.

Natalie
( I'm sorry if it's really long and too much.)

Bloggerbar

Natalie, it's not too much or too long it's nice that you can write it all down. I related so much to when you have had your problems as mine started just before my first pregnancy then went very bad and ended up in the hospital and it was decided that I needed a hysterectomy to have my daughter then like you nature seemed to take over and it settled down for a while.

Like you I have also felt that some people don't seem to realise the sort of pain that you are in as it's not always visible. I am a true believer that if I make the effort to make myself look respectable in the morning that will make me feel better inside but then it makes others think there cannot be much wrong with you. I've always said that just because I don't walk around in a bandage doesn't mean I'm not hurting.

Why not try writing a blog? It will give you something else to focus on that you can do sitting down. It will take you away from your pain if only for a short while. How did you feel after you had written all this down? I know I feel better after I have had a bit of a vent on a bad day.

I have the most amazing pain management team who look after me which could be something you could look into. Most NHS hospitals have a pain team in situ who understand and can offer help. I hope you have some pain free time soon. Take care.

DavidJ

Some really interesting reading here.
I had never given any thought at all to writing a blog . I have good days and bad days and sleeping days and boring days too . I don’t sleep for any length of time so tiredness is just something I have to live with.
So as Bloggerbar has suggested how do I feel after writing down what’s going on with me??
Its an interesting feeling to know that through this medium more people that I have never met , nor probably likely to , know more about my ups and downs than my own family ! Not that they don’t care I think it’s better for them when they say dads not having a good day or he is having a good day because I have gone out somewhere !! So I have a bit of a fragmented family who are all in different places and my “problems “ never crop up in conversations. Living on ones own does have some advantages like not sharing the TV remote and being able to come and go when I want to.
Having said that there is the other side of the coin and that’s combatting loneliness . Sometimes I don’t see anyone for days into weeks (family) but with a military background I can live with that most of the time . I have become involved in my local community and sit on several groups within Leeds city council housing group.It gives me opportunities to travel and meet other people So this gives me things to think about and do and it keeps my brain functioning , especially through the headaches. I haven’t met any one else yet who lives with permanent headaches ! It’s just something I’ve become used to .I enjoy a little gardening too and would love to post pictures of my roses and clematis!!
I try my best but the weeds beat me every year. I lose plants for one reason or another but keep on going . I like to sit outside especially in this weather but I can’t sit in the sun like I used to. So I built a pergola with a roof on and trellis sides .I have had to line the inside with light tarps to keep the prevailing wind off!! But the covering plants give it height and take away the eyesore.
Time to lie down and take painkillers and enjoy the silence .
Thanks folks

Bloggerbar

David, thanks for commenting, but sorry to hear you suffer so much with headaches, I cannot imagine how you deal with that.
But you MUST start a garden blog, you sound inspired just reading about your roses and could inspire others in the process.
People love outdoor and garden blogs there are lots to read. Try putting 'Gardening Blogs UK' into Google and see what you find. I know one thing you would definitely make and that's friends through that sort of blog. It will take you away from it all for a while even if it's only a short time but it's something to look forward to reading and writing when you're a bit low.
Good luck and do let us know how you get on if you start a blog. Don't hesitate to ask for help if you get stuck along the way. Take care.

elly9

Your life sounds very much like mine except ive yet to find someone to build me a pergola. I need one so I can sit out in the shade even when it’s raining. I like my plants to but I don’t do so much nowadays. I have to have someone do it for me

Bloggerbar

Oh me to elly9, I would LOVE a pergola. My favourite place is sitting in a chair and watching the birds which I spoil rotten. I only sit out when then brolly is up so a pergola would make it suitable for all year round. Take care,

DavidJ

Bloggerbar
I have just discovered Scope on Facebook!
I have posted a few pics on there.
Please rest assured I didn’t build the pergola , I had it made to my specs . It’s quite simple and I will share with anyone as the plan is still in my head !! It’s basic and functional , but there are lots of ways to do it

DavidJ

Elly9
I do all that plus collect rainwater too ( when it rains !! It’s not difficult except for us . Can you get anyone to help

Topkitten

Back pain is both an elusive and emotive issue with almost everyone. Those that suffer understand up to the level at which they suffer and those that don't suffer struggle to understand it at all. There is also a large group of people that do suffer but only muscular problems and, I believe, they find it the hardest of all to comprehend those that have much more intensive issues.

Osteoporosis, Arthritis and damage are the most common of the more intensive pain but Fibromyalgia and nerve issues confuse the clarity somewhat. Then there is the rather strange fact that similar damage due to wear and tear can leave one person suffering badly and another with no problems at all. It just makes it harder to quantify and explain. Add to that that almost any continuous pain will cause further muscular pain for people to deal with. Combine all this with another fact, that of people's differing responses to medications and the whole subject becomes very murky indeed. I did find that fracturing a vertebrae was unexpectedly painful considering I have been dealing with pain for many years but that is because it is a different kind of pain in an area that usually did not hurt.

I can understand women having a problem with carrying a child causing problems as that is an awful lot of unbalancing weight carried for a long time. My sister slipped a disc with both of her children and still has problems with it sometimes. And yet, she still could not understand the Chronic Pain that I have to put up with. Oddly, in my case, I have had very little back pain and only in the last year or two as the discs in trouble rose higher up the spine. My pain is mostly confined to the hips and legs making walking progressively more difficult. I have had one thing in my favour though, I have had no really bed side effects with any of the pain medications (I've been on almost all of them at times). The biggest problem I have faced is explaining to people that spinal damage doesn't necessarily cause back pain which almost everyone assumes it does.

I am over 60 and have suffered for 13 years of increasing levels of pain which, from very early on, was explained to me is not treatable with surgery. Management and Pacing and minimalism have been my watchwords. I have not considered blogging it all but, since I find explaining it from grass roots depressing, probably never will. I am sure though that it can be, for some, a very good way of dealing with the negative thoughts that follow on from being in constant pain and becoming disabled.

The only thing I have really become sure of is that doctors in general do not understand severe pain especially back pain and really just follow guidelines set down by others and hope for the best. Even knowing some of the more common causes doesn't seem to allow them to grasp the real issues and work closely with the patient to find the best solutions. Maybe that's the time factor but I don't think so as I did have a really good doctor for 6 months and, during that period, her extra work and contact with me meant much better control and much less bothering doctors and taking up their time. If only more doctors would work the same way then I think they could actually reduce their workload rather than just following standard procedures and hoping for the best.

TK

Bloggerbar

Topkitten, I could not agree with you more on many of your comments, in particular, your last paragraph about good Doctors. I think they all differ so much in what they seem to have knowledge on with regards to chronic pain so if you find one who is better than another then stick with the Doctor that helps you most.

For years I saw different pain consultants and then about 10 years ago I went onto a pain management course which they said I would know inside out but it got me on the top of the list for pain management help and I met the most amazing consultant who seemed to understand everything I explained and does his utmost to help me if he can.

With regards to writing a blog you don't need to write about your pain but something you are interested in like David J with his gardening projects.

I hope your day has some pain free time in it. Thanks for your comment topkitten.

Bloggerbar

DavidJ - that's great - I will pop over and have a look on facebook. Have a great day.

Chloe_Alumni

Thank you everyone for all of your comments! It is so lovely to be able to have a space to share this kind of information. Also, thank you to @Bloggerbar for sharing this blog post and advising others

elly9

DavidJ said:

Some really interesting reading here.
I had never given any thought at all to writing a blog . I have good days and bad days and sleeping days and boring days too . I don’t sleep for any length of time so tiredness is just something I have to live with.
So as Bloggerbar has suggested how do I feel after writing down what’s going on with me??
Its an interesting feeling to know that through this medium more people that I have never met , nor probably likely to , know more about my ups and downs than my own family ! Not that they don’t care I think it’s better for them when they say dads not having a good day or he is having a good day because I have gone out somewhere !! So I have a bit of a fragmented family who are all in different places and my “problems “ never crop up in conversations. Living on ones own does have some advantages like not sharing the TV remote and being able to come and go when I want to.
Having said that there is the other side of the coin and that’s combatting loneliness . Sometimes I don’t see anyone for days into weeks (family) but with a military background I can live with that most of the time . I have become involved in my local community and sit on several groups within Leeds city council housing group.It gives me opportunities to travel and meet other people So this gives me things to think about and do and it keeps my brain functioning , especially through the headaches. I haven’t met any one else yet who lives with permanent headaches ! It’s just something I’ve become used to .I enjoy a little gardening too and would love to post pictures of my roses and clematis!!
I try my best but the weeds beat me every year. I lose plants for one reason or another but keep on going . I like to sit outside especially in this weather but I can’t sit in the sun like I used to. So I built a pergola with a roof on and trellis sides .I have had to line the inside with light tarps to keep the prevailing wind off!! But the covering plants give it height and take away the eyesore.
Time to lie down and take painkillers and enjoy the silence .
Thanks folks

elly9

I seem to be living the same as you. Although I have large family I often go for weeks without seeing anybody and i
have just bought a pergola and having a go with clematis etc. Just need to get somebody to put it together for me as I can’t do it

zakblood

i worked in the building trade, carry heavy weights day in day out for 30 odd years, had back ache most of my adult life, after a spinal tap for meningitis when around 14 years of age caught my spine, didn't know at the time, and wasn't until later on, much later on and too late to do anything about it, just got used to living with it, lost my first wife because of my mood swings and being unable to control myself and mouth, lack of sleep, unable to fully understand what was wrong, i just assumed i was a moody type and couldn't cope with the hard work as well as everyone else i worked with, doctor at the time said everyone gets a bad back in the building trade with hard work and damp conditions etc, try and work it off, so you keep on doing the same, until you can't any longer stand it, left work in 1999 and went to see my first real doctor, who sent me to hospital and was surprised to get seen almost straight away, over the next 2 years while in another easier and less hard job i had MRI's and XRay's etc and seen 2 consultants and a professor, all saying the same thing, spondyloarthropathy, spondylarthritis.

something you will again have to get used to, as you will get worse over the years, until you can't no longer stand straight or walk or bend etc, so heavy work was out of the question, so it seemed my days of working was going to be behind a desk, which while it was new to me, paid the bills and i got used to it, but over time, i started to have the same issues at a desk, which i have walking, so driving became quite a chore, lifting and walking became worse and a started to wonder if working was going to last, not used to having time off and being quite strong and fit on the out side, but being a mess on the in side, it started again to take it's toll, seems the body gives up over time, but the mind can go at any time.

so packed in work and went onto incapacity, where i stayed until it changed onto ESA, where i was put and have been ever since, after now 5 WCA, which i failed the last one, and was told by a nurse, i'm cured and no longer ill, which i found a bit odd, still being under the hospital at the time, and waiting on the list for more appointments and hoping to get a operation asap.

but as the DWP is never wrong, i sent in my MR which got lost, even when i sent it recorded del, so could prove i sent it, but apart from that, i'm doing ok now, have issues than i ever started with 20 years ago, as used to just have back ache, now i have problems with long term tablet use and 3 other issues relating to it, like most, have next to no bladder or bowel control. mood swings dependent on how well or not i've slept, can argue with a saint, about the shades of white, eg anything and at times feel like i could swing for almost anyone who doesn't fit into a every decreasing circle of things i like, eg most people put me off with one comment or another, as on the outside, i look quite well, but on the inside, is another matter, with no wheelchair, blind stick, i'm a work shy, dole scrounging waste of space to most, so tend to shout more than maybe i should.

pain isn't really an issue any longer, pain clinic sorted me out good and proper, so unless i have a flair up of Sciatica, is somewhat manageable most of the time, with sleep being a different story.

so with 20 years on sick, the DWP now says i'm fine, ok, makes me feel much better knowing someone who doesn't know me, doesn't understand me or medical issues, and is just a nurse who says on the form, i'm a man one min then a woman the next, gets my tablets doses and tables tbh wrong, then states i gave her no tablets either, no medical case notes, then goes on to say and write it in her report, then over the page, notes the 80 were signed and received but not read, lol i couldn't make it up if i tried, i asked for recording equipment to be there in my assessment, only to be told on the day it wasn't asked for, even when i shown her a copy of the note and where it was on the form sent in, and was told if i didn't do it now, it would be taken as a failed to attend, but all this is beside the point,

she says i sat for 5 mins without any discomfort and walked from the waiting room un aided all of 15 steps and could reach and open the door with my right hand, as my left was hanging limp and unable to be of use, so if anyone has a job for a ex builder who can no longer lift, sit or drive and is rather moody, please give me a shout, well better to just email, as shouting at me, tends to get a rather naughty reply most of the time, don't mean it, just kind of happens without the brain even starting to register it,....

hobbies are now, i'm on twitter and a few others and spend as much time as i can, sending messages to anyone in any department of the government and being a right pain, why? well why not, i'm better now, as they have told me so, job center says not, so won't let me sign on saying i'm not fit for work, so it's the long wait until either the Tribunal, or i starve, than god i have a good family and supportive friends, without i would have? well too dark a place to type either, so most would guess, but anyway, illness now free, so says the DWP, any tablet less, as no money to buy them, but tbh there's plenty worse off, so in the end, what else matters, i'm alive