Communicating with loved ones

I hear and see a lot of pain posts about invisible pain and illness. Often people will say how others don’t understand what they are going through. I was the same. I would paint a happy picture to all those around me. When friends and family asked me how I was doing,  I would say “Yep. I’m fine!” I didn’t want people’s sympathy, so I just fobbed it off and changed the subject quickly. But, over time, I’ve learnt this can be damaging to me in two ways. Firstly, it is just plain hard work to pretend when you are in pain. Secondly, my relationships became strained. My loved ones truly wanted to know how I was doing and if they could help but I shut them out because I thought they just wouldn’t understand.  

I think, especially at this time of year, when we are probably spending a lot of time with our friends and family, I thought I would write a few notes on the importance of communicating when you self manage chronic pain. Here are my top tips:

Tell them. Have some real conversations. If a loved one asks you how you are feeling, it is OK to say “Actually, my pain is bothering me today”.  I often found it hard to describe the pain when I was in it because I think a large proportion of my energy was required to manage the pain.  I didn’t have much strength remaining for a deep and meaningful. But that is not to say you can’t talk about it when you are feeling a bit better. Perhaps it might be easier to describe your pain and its impact on your life on paper, in a short film or poem.  But, whatever your mode of communication, I believe it is important to tell your nearest and dearest what it is like for you. They may not be able to empathise as they haven’t felt that way before but they can try if they know what it is like. If you keep saying you are fine then they never get the chance at understanding what you are truly going through.

Ask for help: My loved ones were often offering help to me. They do this because they care and they don’t want to see me suffering. So I have found that once I learnt what works best for me when in pain, I needed to tell them too. I had my loved ones spend the day with me during the pain management course and we went through, together, the activities and techniques that would form my new bag of tricks when managing pain. I also set up a few new rules. As a self pain manager, I said I would ask THEM for help when I needed it.  I also went through my new pain management strategies because when I was struggling I wanted to be sure they were going to offer me real effective solutions. I didn’t want to be mollycoddled . I didn’t want them to suggest I go have a lie down. Now, they tell me to go for a walk or do some stretches because we all know this is what works for me.

Be prepared: I just think it’s good to have a few pre-prepared comments ready for the common situations you may experience. So if the offer of help/query about how you are feeling is made, be sure to be accurate in the answer and give appropriate direction as to how that person can actually help you. My favourite goes along the lines of “My pain is bothering me, would you mind if you (...do this...) so that I can (...do this...)”. For example, here is a common one for me, I am out at a social function and chatting away happily with someone. But sitting and standing for long periods are often recipes for a flare up. So I might say after a few minutes “Do you mind if we sit and keep talking because my pain is bothering me as I have been standing up for a while now?” Or something along those lines. So I always have a few phrases ready and I make sure they are clear, calmly delivered and, above all else, helpful to me in that exact moment.

Get a tribe behind you. I recently attended a pain management support group social event. There was a lot of comparing treatments, specialists, pain conditions. I sat back and listened and tried to ascertain if this was a beneficial exercise. Sure, it is nice to know others are out there in similar situations. For some, this can help to realise that many of the reactions to pain and how it affects your life are universal. You feel less alone.  But, I was concerned because there was very  little suggestions of alternative solutions, techniques within a person’s control to deal with their pain. Since starting this project, I have connected with a number of like minded individuals who believe in the power of self management. This is a great supportive network to be around. When I am feeling low on motivation or struggling with some aspect of my journey, this tribe builds me up and gets me back on purpose. That, to me, is much more helpful than having a pity party. If you focus on the negative, then maybe that is all you will see?

So, it is New Years Day, have you got a resolution in mind? I saw one thing that I thought really true about living with chronic pain. Focus on the things you CAN do. You can have conversations, you can ask for help and you can be a part of a supportive network. What are you going to do?

My Story - Part 1 (Before)

My story starts with my older sister being a know-it-all! She was studying Physical Education at university and she was learning about scoliosis and decided to use her eleven year old sister to practise her diagnostic skills. She made me touch my toes and announced to my mum that “Yes, I definitely had it”. Surprisingly, no one (not even me!) had noticed - but she was right, I was out of alignment and had a large lump on one shoulder blade and uneven hips! An out-of-date local GP told me I was going to be in plaster for 6 months. We were all in shock! But X-rays did confirm I had scoliosis, and a pretty severe case too. An S shaped curve measuring 52 and 54 degrees.  

I had two corrective surgeries when I was 11 and 16. While I often brush these off in my story, they were major surgeries for a young girl. Weeks in hospital and off school, rehabilitation, I had to wear a plastic brace for 6 months and have on-going therapy. In the end, the surgeons were happy because they were able to correct the curve and now my spine is straight, with the help of a rod, screws and bone grafts. It makes for a good show and tell X-ray.

My spine X-ray taken ~2009

 

I have had chronic back pain nearly my whole life since the surgeries. There have been good days and bad days. I returned to see my surgeon often and I would explain my pain but he would offer no real explanation or solution.  My pain was generally in my lower left hand side of my lumbar spine, generally around the area where vertebrae are fused together. More recently, bone scans indicated degeneration of the facet joints and further surgery (fusion to the sacrum) was suggested.  But I didn’t want to go down the surgical path again. Alternative therapies were tried with limited success. Partially because I think I never fully committed to their suggested exercises/routines because they never “magically” took the pain away, but also because a single physical approach did not address the physiological issues surrounding my pain.  I have also tried most prescription pain medications. The side effects of these are many and varied but I often would suffer severe constipation from codeine, nausea and motion sickness from the morphine based transdermal patches or effects on mood from the antidepressant range of pain killers. With each new drug I tried it wasn’t long before the mild easing of pain became ineffective. The long term use of prescription medication for my chronic pain was not the answer.

My general approach, on a day-to-day basis, was to cram everything I could into days when I felt good, leading to days of suffering because I had overdone it. I would ignore my pain, wish to be “normal” (read pain free – what is “normal” anyway?)  and just power ahead. I didn’t tell many people how awful I was feeling (except the inner sanctum - my husband, my mum). For everyone else I slapped on my brave face (and I got pretty good at it as far as I could tell!) As I have aged my flare-ups got worse and my ability to deal with them drastically decreased.  

My husband and I were always worried how I might go having a baby. I became pregnant in March 2007.  I was working fulltime and after coming home many nights in tears from the pain. I reduced my hours but then decided to resign when I was 5 months pregnant. Once I stopped working, the pain seemed a little better but this was most likely a result of the reduced stress and travel to and from the city. I was induced at 42 weeks and had an 8 hour labour. But it was all worth it when our beautiful daughter, Olivia arrived. She was a calm and easy to settle baby but all the changing, carrying, settling, picking up really took a toll on my back, particularly as she got bigger and heavier. I was having 2-3 days in severe pain (mostly in latter part of the day) and frequently needing help. I was depressed because I felt like I was unable to look after my child properly. I was often in tears about being a bad mother, feeling like I would never be able to run and play with her whenever she wanted to, pick her up and carry her around when she needed comforting. About a year after the birth (as those pregnancy hormones were fading and as she got heavier) I was near rock bottom.

I would become almost obsessed and consumed with my pain. My negative thoughts around my pain would escalate from thinking “I can’t deal with this” to “I am a hopeless mother/wife”, and “I am letting everyone down”. My husband referred to these thought processes as snowballs. I would get wound up catastrophising every idea, rehashing past mistakes, worrying and fearing future unknown pain events and rarely in the present moment. I went from a gentle snowflake to an avalanche, careering out of control down a dangerous emotional slope. I never even realised the destructive power these snowballs had… I was too consumed by my pain. I found it hard to look beyond it to see all the beautiful things that were still good in my life.  I had so much to be thankful for…but I just couldn’t see past the pain. And the difficult thing was I felt so alone. Despite the fact that 1 in 5 Australians suffer chronic pain and that so many people suffer in similar ways to me, I thought I was the only one doing things tough and suffering. I couldn’t see the true impact my condition was having on my family. They suffered too by watching me suffer. I felt I was such a burden to them. I actually believed they would be better off without me. Pain blurred my reality to such a degree that I could no longer see beyond it. I became so wrapped up in my misery that hope seemed an impossibility. 

Please don't stop reading (its a bit depressing isn't it!?)...If you have the time, read My Story - Part 2 (AFTER) because this is when I really changed my life and began to TAKE HOLD of my PAIN!

If you can associate with any of these symptoms, feelings, thoughts, experiences, please comment below and share!