The Reality of Living with Chronic Pain

I look in the mirror and what do I see?  Bags under my eyes because Emma hasn’t slept for more than an hour without waking up in over a month. I see evidence that I am getting my period by the spots on my chin and the huge white circles around my eyes make me realise that I really need to take my sunglasses off when I am in the sea as I currently resemble a panda.

But what you, or I, cannot see is the marks that are left all over my body as a result of the pain I have been in for the last 7 weeks. You cannot see that I have had a headache for two solid weeks because Emma accidentally headbutted me when she was jumping up into my arms.

You cannot see the burning pain that sits between my spine and shoulder blade and radiates out my arm. The pain that is so bad that by the end of the day it makes me feel sick. I have been told that the lump that I can feel on occasion is what is known as a myofascial trigger point. That little beauty has been there since I was 16. I am now 30.

You can’t see the pain in my lower back that runs from either side of my spine, out to my hips and down the outside of my legs. It makes lying on my side virtually impossible and also causes the bit between my bum and hip to go into spasm at the most random and inopportune moments.

You cannot see that the muscles in my upper back are in spasm for the 4th day in a row. It’s hurting to breath as they are so tight. If that wasn’t enough to deal with I also have pain in my sternum and across to my left shoulder. Last September I over stretched when I reached for my phone on the bedside table and I was given the lovely present of costrochondritis. This basically means that from time to time, any movement I do with my upper body gives me a pain in my breast bone so bad that I feel like I am having a heart attack. I know that life is good when both my chest and back are having problems. I am certain that they both occur at once just to keep me on my toes.

Today if I looked in the mirror I would see red puffy eyes because I have spent the last 24 hours crying. Today my mask has slipped and I feel that I just cannot hide it any more. I try my hardest not to dwell on pain but today it is all I can think about.

The very first thing any doctor will tell you about chronic pain is that you need to learn how to mentally deal with it. Therapies – such as Cognitive Behavioural Therapy – are recommended so that we can learn to adjust how we think and feel about pain. For me, dwelling on the pain makes it worse. If I think about it or give it too much credence, I get sucked into this never ending spiral of pain and depression. One feeds in to the other and it becomes difficult to get out of. However, sometimes, all I can do is think about it.

Regardless of Emma not sleeping properly (lets face it, she has always been a terrible sleeper), my sleep over the last 10 or so days has slowly been getting worse. I cannot fall asleep at night because of the pain in my spine and I cannot stay asleep because every time I turn over I wake up due to the searing pain in at least one muscle,

When you see me with a smile on my face, it doesn’t mean that I am not in pain, it just means that I am used to hiding it. When I post happy, smiling pictures of Alex and Emma on social media, it doesn’t mean that I am doing well, it means that I have used every ounce of energy that I have to spend some fun time with them.

When someone tells you that they have chronic pain, just because they look okay, doesn’t mean that they are.

*I wrote this last week when I was feeling incredibly unwell. Thankfully, I am feeling a little better right now and I have an appointment to see a pain specialist next week. I am hoping that I will begin to feel a lot more like myself in the coming weeks*

September is International Pain Awareness month. The aim of International Pain Awareness Month is to raise “awareness through mass media, public forums, and other sources so that chronic pain may be more readily recognised, better understood without the traditional stigma attached, and more fittingly treated and managed.” – chronicpain.ie

 

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20 Comments

  1. September 18, 2017 / 5:47 pm

    I can identify with this so much. I recently completed a pain management course and the best thing I got from it was friends. Having people in my life who get it, who understand what it’s like to be in constant pain, 24/7, every single day and how we have micro-manage our lives is amazing. I hope you get the chance to do similar. x

    • Susan
      September 25, 2017 / 11:36 am

      That is fantastic that you have a group of people who can understand what it is like. It really makes all the difference to dealing with the pain. I hope that you continue to do well. Thanks so much for commenting x

  2. September 18, 2017 / 6:03 pm

    Oh I totally get this as I have M.E and Fibromyalgia. I just think normal people have absolutely no concept that a person can be in pain 24hrs a day if there is nothing visible! I push myself through everyday doped on morphine and other concoctions for people to see me and say ‘Oh you look well’……yes I may look well but actually I am screaming inside from the pain but I am hiding it with smiles and conversation. Having had the illness for over 8 yrs now even my hubby can forget that I am pushing myself most days and wonders why I get snappy. I don’t wish this sort of pain on anyone but if they could just get a sense of it for a day I think they would be much more understanding don’t you?

    • Susan
      September 25, 2017 / 11:39 am

      I definitely do. Like you I don’t wish this on my worst enemy but it would help with the understanding of the illness. When I say I cannot do something, I really mean it. I’m not just being lazy. Thanks so much for commenting x

  3. September 18, 2017 / 8:10 pm

    Hi, that you for highlighting this’d important topic. Your last sentence sums it up nicely just because they look ok doesnt mean that they are #bigpinklink

    • Susan
      September 25, 2017 / 11:38 am

      Thanks so much for reading x If just one person takes away from this that just because we look okay that we are not, then I have done my job. It is hard for people to see what is happening inside, sometimes x

  4. September 19, 2017 / 3:28 pm

    Oh bless you. I haven’t a clue how it feels but well done for writing it and I think it’s always good to write things like this when you’re actually going through it (if that makes sense?). #KCACOLS

    • Susan
      September 25, 2017 / 11:34 am

      Yes it makes sense x that is why I like to write about these kinds of topics. It gives awareness to something we may not necessarily talk about and it allows me to process it to a certain extent. Thanks so much for commenting x

  5. September 19, 2017 / 9:43 pm

    I’ve never heard of CBT as a way to cope with chronic pain but I can definitely see it working for that as someone who has it. i hope you’re feeling better now. Take care. Thanks so much for linking up at #KCACOLS. Hope you come back again next time

    • Susan
      September 25, 2017 / 11:28 am

      I am starting to feel better so hopefully I will continue this way and not get worse. Thanks so much for commenting x

  6. September 20, 2017 / 7:25 am

    I’m so sorry to hear this, but I hope the pain specialist can help you get as much relief as possible! #bigpinklink

    • Susan
      September 25, 2017 / 11:23 am

      I hope so too x thanks for commenting x

  7. September 20, 2017 / 12:35 pm

    I know this, every word you say. I have lived it for 32 years. I want to know, I recently had a huge breakthrough. I was in a state (Colorado) where marijuana is legal. They have open dispensaries and you go inside and speak with a budmaster. I talked about my pain and purchased medical marijuana, very high in CBD oil and very low in THC (the stuff that makes you high and get the munchies… It was a game changer and a life-altering moment. I am actively and anxiously awaiting legality her in PA, where I live. I am an ardent supporter. If you want, check out a post of mine called, Start Spreading the News… I’d love for this to help as many people as possible. I have had surgeries, opioids, procedures, acupuncture, tinctures, physical therapy, and no avail. This works. I hope it can help you too. Happy to talk more if you like. xoxo #KCACOLS

    • Susan
      September 25, 2017 / 11:22 am

      I will check out your post, Lisa. Thanks so much for the heads up and I am glad that you are doing so much better as a result. Thanks for commenting xx

  8. September 20, 2017 / 1:02 pm

    I have scoliosis and arthritis in my hips and knees.I do as much as I can each day, despite being exhausted I rarely have 8 hours of sleep.I have just learnt to accept it now, I still push myself though.Weekends me and the kids go on long walks, which means I maybe in more pain than usual for a few days afterwards but I feel like I’ve accomplished something.There are many who are in much more pain than me, having missing limbs or cannot walk at all. I want tot make the most of it now.I hope you get a bit of rest soon.

    • Susan
      September 25, 2017 / 11:21 am

      Thankfully, I am starting to feel somewhat better. Like you, I try to just get on with it but as things have just been so bad these last few weeks, I had to give in to it. I feel better as a result but I also like hearing about other people going through similar as it makes me feel as if I am not alone. I am sorry that you are suffering too. It is just a bastard and makes you feel like you are much older than you actually are! thanks for commenting x

  9. September 24, 2017 / 6:28 pm

    That sounds awful! I suffer from anxiety and have been having CBT which I don’t find overly useful. How have you found it?
    Thanks so much for linking up with #kcacols. We hope you can join us again.

    • Susan
      September 25, 2017 / 11:18 am

      I haven’t started CBT yet as I cannot find a reputable source here in Cyprus. I am hoping that once the change in medication for pain management kicks in, that I will be doing much better. I am sorry to hear that you find that CBT isn’t helping you. Have you spoken to your team about this? feel better soon and thanks for commenting x

  10. September 27, 2017 / 7:24 pm

    I’m so sorry to read how you suffer. It makes me so sad but I’m a seems so grateful. I know this is of no consolation to you however.

    I had scoliosis corrected almost 18 years ago but still suffer will frequent pain and there are a lot of activities and positions that will intensify the pain. I’ve also been a migraine sufferer since I was 15. Chuck in the shit storm that pregnancy and childbirth (emergency section) was for my body and I’m no stranger to pain.

    That said, reading posts like yours make me realise how fortunate I am that I don’t suffer more. Often we do just put on a smile and crack on because anything else is admitting defeat.

    CBT is definately something I’ve heard can assist in chronic pain. I know it does wonders for many psychological conditions such as anxiety.

    Even as a tinnitus sufferer there is a CBT style therapy used to help you learn to “ignore the noise” in your ears. Defo give it a try.

    Stay strong and when you can’t be strong be kind to yourself. Don’t compare yourself to others. Just know just you are not alone. Have a cry. It helps.

    Hope the pain specialist helps you get some relief.

    Lots of love. #KCACOLS

  11. September 27, 2017 / 10:55 pm

    Popping back, ever so gently, from #dreamteam and hoping you are doing okay, friend

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