Crash and reboot, the chronic back pain tales

Making notes for this post I wasn’t even sure if I would ever publish it…it’s not a ‘happy’ topic, but it’s part of who I am, right, so why not?! I promise it will not be a depressive or even too long post!

Just to fill in the blanks for those who do not know me, or those who didn’t know that part of me yet: I have been a chronic back pain sufferer for more than thirty years now after several surgeries between the age of 14 and 19. I take tons of medication daily, have regular treatments in pain clinic and stopped working years ago as physically no longer manageable though I left many tears for giving up my job, and still do.

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Daily meds

End of story right, take your meds, physio once in a while, lots of resting, respecting the boundaries…oooh I wish it was that simple!

I have a lot of radiating pains, to my legs, to my arms and neck and sometimes to my head leading to migraine. I call them my ‘attacks’: they vary in severeness and in duration, from a few hours to two days. They come on top of the usual daily pains I have and to which I have grown accustomed. They start at random, not triggered by anything specific, though I should not start vacuum cleaning the whole house😉, I can only do one room, or cleaning windows, etc,…things I have all learnt to work around or find other solutions for.

My days are planned based on how I feel, after doing groceries I rest, I sometimes leave them downstairs to unpack half an hour later because I need to lie down first. When cooking dinner I start my preparation in the afternoon so I can rest before doing the actual cooking, that means if dinner is something more elaborate than just cooking pasta! I split up nearly every activity, so I can rest in between. When having a party or invitation by friends or family we try to avoid two evenings in a row, as I know that is asking for trouble. When I know in advance we go out, the schedule is extra cleared the days in advance and resting is doubled. Luckily I have two lovely, understanding men in my life and here in the house helping me out, my husband and son, I honestly would not know what I would do or who I would be in all this without them! I feel blessed with the lovely friends, family and neighbours stopping by concerned and offering their help, so warms the heart!

Though I have learnt these attacks don’t last, every single time they knock me out big time, it’s not only my body that crashes, it’s a mental thing too and takes time and a lot of inner power to reboot every time again, over and over again. Sometimes I’m lucky and I am only overrun by such an attack once every two weeks, sometimes it’s two in one week!
During those attacks, depending on their severeness, visualisation usually helps me…oooh the beaches I’ve been on, and mountain streams, feet in the splashing water, or recalling happy memories from past holidays…I have a happy song too that goes over and over in my head: Katrina and the Waves’ Walking on Sunshine😀how bizarre is that, but it helps…

The most difficult thing still is to let go: letting go of the plans made for that day or evening, my social world has already been reduced and changed, so I do want to hold on and cherish the people and the things I still have or can do but on the attack days I have no choice: it’s letting go, hoping for better hours, days to come, finding that inner strength to reboot again and focus on the many things I can still enjoy like cooking and baking, reading, gardening, photography, holiday planning and dreaming, making new friends, so once I’m up and running again, well, figuratively, don’t it feel good!

Ingrid
Xxx

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Garden – Hebe Addenda
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13 thoughts on “Crash and reboot, the chronic back pain tales

  1. Oh that’s interesting to read Ingrid. It’s good to see how others cope with varying degrees of back problems. It’s sad you’ve had to live with it for so long. You seem to have a lot of vitality but I’m sure that takes effort and practice.
    I am not as bad as you and I think to some extent much of my problem ( whatever it turns out to be) is self made. I have danced, walked thousands of miles, carried too much and moved in ways I shouldn’t! My backs just reacted by putting itself out and going into spasms and causing me lots of problems. It’s saying stop!! Luckily I have a very helpful husband as I can’t lift much or stand or sit for long at one time. I best walking! ( but stairs are not kind to my back!).
    It’s got worse since I had my hip resurfaced 12 yrs ago. That was very successful but as everything joins up to the back I get referred pain in my back which can be acute rather than the back pain which is more a nagging ache and weakness. Both have caused depression.

    I’ve more or less given up medication as cannot tolerate the side effects. I use compresses ( hit on back and cold on hip), lots of massage oils ( I have one now with herbs and arnica which is very soothing before bed ( and helps sleep). I took up ‘Mindfulness’ ( I had a 9 week course on our NHS – it’s used as an alternative to medication for depression). That worked well and it can be used to help with pain too. There are plenty of CDs to help with this too. Then my brilliant physio who I found helps a lot – he believes I can get over most of the problem eventually. He referred me to an equally brilliant Pilates teacher ( who is also a dancer). I’ve had individual lessons with her and this has strengthened the muscles in my hip and supporting my back too. I’m not using a stick most of the time now and if I rest and don’t carry heavy things or sit too long I can cope better. I’m even getting my wonky walking better.

    Also I think distracting myself helps too. Doing things I like doing – seeing my family ( especially grandchildren), walking, photography, reading and my husband’s hobbies all distract me.
    So I think I’ve come along way ( Doctos here don’t help a lot with back problems so you have to devise your own plan of action.

    Thanks for sharing you experience. I think it helps to know there are others out there we can perhaps learn from.
    xxxx

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  2. Thank you for reading through and sharing your story Sue, it’s indeed a never ending thing, the ups and downs and like you said, most of the things are trial and error, a search mostly on your own and finding out what helps you best! I use heat and cold too, you should see me lying here sometimes😖Heat pack in neck and upper back, cold pack strapped onto burning spot on lower back, cushions for more comfort, blinds all down because I can’t stand the lights and sounds and praying it may be over soon…the attack that is, am not yet tired of life! Would like to try yoga, but would need individual lessons too I guess, must do some further research into it. Holding on to those things that give joy is soooo important, but it’s not fun if you feel you can do less than the year before and the year before that…it’s hard to keep the scale in balance and finding things to replace those things you had to give up, but we’re strong right, we’re no quitters! Big, big hug 😘

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    1. Thank you for reading through! People often just see one side of us, sometimes because it is the only side we let them see…the one with the smile but it takes a lot of energy to put on that smile! But personnally I like to surround myself with optimistic people, it helps to think about other things than just that one thing, you know!

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    1. Hello Peggy, thanks for reading through! Letting them know that you are there for them if they need something means the world, that may be something practical like getting groceries or cooking when they can’t or just lending them a listening ear if they feel the need to talk about it, or if they are a bit like me, distract them of their situation. I hate going to support groups, they only bring me down, I can understand they can be if help for some people, but it doesn’t work for me. When I’m able to get out of the house and meet up with friends I want to talk about happy and silly things and laugh! So ask your friends wath makes them forget their pain…is it a good movie? Maybe you can watch it together? If they are not mobile enough, you could rent some. An uplifting ecard by mail just to say you’re thinking of them…and it may contain humor, it all already heavy enough, right?! Hope this gives you some ideas on how to help your friends and be assured Peggy, that in itself is always appreciated, whatever you do! Big hug xxx

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  3. I could relate to your comment about the most difficult thing being letting go of plans. I think I too would find that very difficult in your situation. It sounds as if you’ve learned how to adjust your plans to fit in what is most important to you. Wishing you lots of pain-free days.

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  4. Im sorry to hear about your back pain. I cant even imagine how difficult it is to deal with your pain. I recently tweaked my back two weeks ago, and Ive been babying it since,. I couldnt imagine have your level of pain for 20 plus years.

    My mom has occasional bouts of sciatica, and I know shes tough, but I thought she was embellishing a little. After having my minor back problem, I know ANY kind of back pain is a big deal.

    I hope you find a solution, even if temporary, to your pain. Blessings.

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    1. Thank you so much Vinny for reading through, yes I sympathise with any form of pain, big or small, when someone is in pain, at that point for them it’s overwhelming…and it’s a bit like they say, you have to have been there to fully understand! Hope both you and your mom are doing ok and can find relief if possible. Enjoy your day! Ingrid

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