In recent years the word “Spoonie” has been used to describe someone like me. Someone who has a chronic health condition. For me it’s pain. I live with pain, most of the time I am the boss of it. I manage it so that it doesn’t appear to the outside world that it manages me. Sometimes the mask slips and I have to admit that I just can’t do it anymore and I need to rest up. Today, this week, is one of those times. I’m all out of spoons.
The idea of spoons – you get X number of spoons a day and you have to choose how to “spend” them. For example a shower might take three spoons, a walk to the shops 5, but you might only have 15 spoons a day, how should you use them best? I don’t always think the spoons thing is always helpful to me, like most people with chronic health problems I have good days and bad. I might have five spoons today, but tomorrow I could have 50. And yes, some days if I use too many spoons I won’t have any or many to use the next day. I feel like I’m saying the word spoons a lot here.
Anyway, long story short. I’ve hurt my back a bit, so my pain levels are high. The numbness in my legs and pelvis is distracting, but I’m trying not to worry. On top of that I’ve got a stomach bug. I’m all out of spoons.
Today I managed to sit up in bed long enough to chug down some painkillers. Then it took me two hours to get the energy together to shakily make my way downstairs to keep the dog company. Then I had to find spoons I didn’t have to clean up the little puppy gifts she’d left me, before I grabbed a drink and lay on the sofa watching TV for the afternoon. I know the boys will be home from school and work soon, so I spent my last remaining spoon on a shower so I looked less like hell for them. No more spoons.
I’ve just had a text “what’s for tea?” To which I replied “I’m too wobbly to stand, sorry”. It’s official, I am all out of spoons.
My beautiful son is making his Beavers promise tonight. I really should go and watch him and his proud moment. I will probably make myself go, using the precious spoons I’d squirreled away for tomorrow. The dog remains unwalked for now, but she’s been played with, which was all I could manage.
I’m normally on top of this. I am normally well in control of my spoons but I’m all out. I’m all out of spoons for now and I’m running up a deficit for tomorrow and the day after.
Note – I wrote this last night on my iPad but didn’t have any spoons or energy left to publish it. I didn’t have enough to get me to Beavers to watch Ben make his promise either, so now I feel like a terrible parent. So here it is, my blog post, and now I’m going back to bed.
I live with chronic back pain. Since November 2012 there hasn’t been a day I haven’t had to take painkillers. It could make me really unhappy if I let it, but I refuse to be beaten down by my chronic pain.
Specifically I had a problem with my L2/L3 disc which is in my lower back. I had a discectomy which is the surgical removal of herniated disc material that presses on a nerve root or the spinal cord, in my case it was pressing on both. I was unlucky and the disc herniated again a few months later and I needed a second surgery. Then five months after that it completely herniated, though that hasn’t been surgically removed. I now have no disc and I am always in pain.
I am used to the pain now, the creeping numbness in my lower body worries me more than the actual pain. I can’t stand for long, I can’t bend well and I can’t lift anything. I’ve not picked my son up and swung him around since he was two, and when he falls over I can’t scoop him up for a cuddle. These are the things that bother me more than my pain.
Dealing with chronic back pain means that in order to be able to have some level of functionality you need to make some changes in your life. It would be very easy for me to sit down and stuff myself with painkillers and just waste away. I could get benefits and financial support, but I’m choosing to do what I can, whilst I can and hope that the help I may need in the future is still there for me. I am unable to work in a “proper job” and so I am now a freelance copywriter working from home
These are some of the things I do to be able to function alongside my pain levels. I know that some days I just need to wave the white flag and take the pills and go to bed, but thankfully those days are few and far between.
Prescription Pain Relief
Chronic back pain needs a proper pain management plan. I have a lovely GP who listens and makes good suggestions. When I was having my surgeries I was on all the pain relief humanly possible, and having lived in that dreamy fog for nearly a year I am quite keen to be on the lowest dose of whatever I’m on. I don’t want my body to get used to the really hard stuff and then have nowhere to go if my pain increases.
Find a GP who will listen and support you and your choices. It may take a few months to get the medication and dosage right so you can find a balance between pain management and not feeling drunk all the time.
I shy away from straight codeine now, having had to go through codeine withdrawal. I take a prescription co-codamol, I also take naproxen which is like ibuprofen, and occasionally a diazepam which helps to relax me when my muscles are twitching or going into spasm. I’ve tried a lot of different medications, some worked, some didn’t. Some gave me thrush, or were too strong or not strong enough. Everyone is different, but once you find what works for you it will make a big difference to managing your pain.
I know everyone says exercise will help but a lot of the time if you’re in pain the thought of doing some exercise is the last thing you want to do. For people like me with chronic pain and mobility issues, exercise is relative. For me I can’t do the hour long Zumba class I used to love. I don’t want to go to the gym. The exercise I do must be within the limits of what I am capable of and must not leave me feeling worse off than when I started. It’s got to loosen my stiff body a bit and it’s got to throw a couple of those happy exercise endorphins at me if possible.
The thought of schlepping off to the swimming baths does make my heart sink, but once I’m in the warm water, bobbing about, having a gentle swim, feeling weightless in the water and raising my heart rate a little, it makes me feel much better.
Walking is also high on my agenda. I have been in terrible pain and not been able to put my own shoes on without help, but I’ve forced myself to go for a short walk around the block and returned home feeling a little looser and better for some fresh air and a change of scenery. I try and walk daily now, I have a Fitbit which helps to motive me. I know my limits, anything over 12,000 steps is going to hurt the next day but I aim for a daily minimum of 7,000.
Some people find Pilates or Yoga useful, find what works for you and how far you can push yourself within your limits. You don’t want to be sore the next day, that’s just counterproductive, but there will be something you can do and it does help.
Positive Mental Attitude!
A lot of people say to me that they don’t know how I cope with living with chronic pain. But what other choice do I have? I refuse to let chronic pain get the better of me, I’m still alive and I’ve still, for now at least, got working legs, a brain and importantly a sense of humour. I’m a stubborn old bean and having an attitude, though not necessarily a perky, positive attitude has for me been one of the biggest things which has got me through the last three years.
I’m a great believer in fake it till you make it, and honestly it’s working. I might turn up at the school gates with a spring in my step looking bright eyed and bushy-tailed, but that’s largely the result of a lot of carefully timed medication. Speaking to a lot of the mums, some have known me for 18 months or more and most had literally no idea about my chronic pain.
People say it must get me down, it probably does but not enough so I’d recognise it. I just know when I have to rest, take my pills and behave myself for a few days. Having a positive mental attitude about my situation has been one of the most helpful things in dealing with my chronic back pain. Like I said, it’s not about being perky, for me it’s about being resolute. I can’t change what’s happened, I can’t fix it in the future, this is how things are and I’ve got to make the best of it.
When you take pain medication you need to make sure you eat regularly and you eat well. A lot of the painkillers like codeine (which is notorious for this) will bung you right up. If I ever take codeine I always take a senna tablet to try and negate the side effects, but a high fibre diet with lots of veggies will stand you in good stead.
Keep your fluids up – drink plenty of water, this will also help with the codeine constipation problem. During the year of my operations, getting out of bed and going to the toilet was all the exercise I was getting, such were my intolerable pain levels back then.
If your general health is as good as you can get it then managing your chronic back pain is easier. I know if I’m ever ill it can throw off my medication schedule and lead to greater pain levels which can take days to correct.
When my lower back is feeling especially stiff and sore, rather than upping my medication I have found that sticking on a thermal patch for the day can really help ease the pain, and the focussed heat on the right spot helps to “fix” whatever is making my pain levels worse than usual. I have tried a few brands but I like the Deep Heat ones the best. I’ve recently tried using their cold patches too. It depends on what kind of pain you’ve got and what you feel would work best on it, but I really recommend thermal patches as a non-medicinal way to manage your pain.
Deep Heat also have other products you could try. I like the roll on muscle massage lotion which is good for a quick hit of relief instead of wearing a patch for a few hours.
Take good care of yourself. Pain is exhausting, both mentally and physically, so every day you’ve got to look after yourself. Run a nice hot bath with a drop of herbal bath oil in it, have an early night or a lie in, treat yourself to a massage or a relaxing beauty treatment.
It’s a rare day I get to have a proper treatment these days, mainly for financial reasons, so I am now the master of at home pampering. I particularly rate Nelson’s Arnicare Arnica Bath & Massage Balm which you can use as a bath oil, but I think it is rather excellent to massage in. The balm is made with Arnica combined with evening primrose, sweet almond oil, lavender and grapefruit. It’s not heavily scented, but fragrant enough to relax you. The oil sinks in beautifully and leaves no residue, I love this for soothing aches and pains and it’s excellent value for money too.
Living with chronic back pain can be all about utility, what has to be done in order to function, but you need to look after yourself. Relaxing and being pampered is for me one of the best things I can do for my back. I find that an occasional visit to the sauna or steam room can really help, the warmth penetrates my aching bones and I feel looser and much better for it. Sure, a spa day would be lovely, but your local authority swimming pool will probably have a sauna or steam room you can access for a couple of pounds.
When you’ve got chronic back pain you can feel like life is best lived wrapped up in cotton wool, I don’t hold that opinion. Ok so my trampolining days are behind me, but it’s not going to stop me living my life and enjoying myself. I know what makes me feel better and I know what makes me feel worse, so as long as I operate within those parameters I can walk the line between pain management and a normal life.
When it comes to chronic back pain there are lots of ways to manage it, these are some of the things which work for me, they may not work for you. It’s a case of trying things out and seeing how they affect you, some will make you feel worse, some will make you feel better.
For me the key has to not let my pain dominate my life. Yes I’ve had to change my job, the way I work and how I spend my days in order to live a more functional life, but I am very happy with what my life is like now. I think my chronic back pain has given me a better perspective and a greater appreciation for things. There are upsides to everything and for me it’s better to focus on the positives. Chronic pain is really bloody awful, but it doesn’t have to define you.