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I am a self-proclaimed “Professional Story-teller”; meaning I just LOVE to talk!

Join me on me blog, where I share my personal insights into business, marketing, motherhood, travel and lifestyle (including chronic pain).

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Living With Chronic Pain – My Journey

My alarm goes off.

I’ve barely slept after another long night of tossing and turning, unable to get comfortable without the searing pain waking me up. I’m exhausted. I open my eyes, slowly. Dammit… The light creeping through the partially opened blinds is enough to set off another migraine. Great. Already starting this bad, huh? Gonna be one of *those days* today…. God I hope the kids aren’t too difficult this morning… Please!

I start to roll onto my side, and push my body up to sit. A technique I have learned to prevent my lower back spasming and hating on me.

Yep, one of those days already. I wince in pain as I remind myself, no… there hasn’t been a car crash. You haven’t been in an accident. There’s no good reason why you’re body feels this battered and bruised. It’s in your head, I try to convince myself, knowing that it’s not…

I close my eyes again and repeat my mantra.

“I am healthy. I am happy. I am going to fight this.” Tears well up in my eyes and start to spill down my face.

I’m starting to prove myself a liar. I am not getting better. Instead, every day feels harder than the last. I hate my body and I hate my condition.

******

Life is busy, and boy, it can be hard. Especially trying to juggle a busy work life with that of having a family. But what makes this even more difficult, is doing all of this with chronic pain. A life many people live – day in and day out.

But sadly, not everyone is aware of the pain that others are experiencing around them. Unless you’ve been a victim of chronic pain, you can’t begin to understand how hard it can be for those living the life, day in and day out.

Personally; I don’t like to complain. I don’t enjoy talking to my friends and family about my conditions. I don’t want people to start to avoid asking me how I am, or even worse – avoid me altogether.

I felt so uncomfortable starting this blog post, and that’s probably why it has sat in my drafts for so long.
But it’s time.

I promised myself I need to make a difference. I need to raise awareness for everyone out there who may be struggling with chronic illness and/or pain.

Because it’s isolating. It’s debilitating. It’s overwhelming. It’s agonising. It’s torture. It’s not something I would wish on my worst enemy

*****

Before pain (as I like to call it); I never could have imagined a life like this. A life where some days, you literally have to coach yourself through the day, fighting against your brain when it tells you that your life is not worth living anymore. A life filled with pain is hard. It robs you of your personal life. Interferes with your relationships, steals your time and energy, reduces your passion and desire.

Pain makes you a liar (I’m fine… I’m well, thanks… I’m just a bit tired. Sorry, I’m busy). Pain makes you avoid social situations, and heightens your senses – smell, sounds, touch and lights. It steals you away from your role as a friend, partner – and even that of a parent.

Ola, I’m Bianca. I have Fibromyalgia, Trigeminal Neuralgia, Occipital Neuralgia, a couple of bulging discs, arthritis, chronic fatigue and chronic migraines (amongst other things!). Yep, I’m fighting chronic pain.

If I really look back, I had chronic pain since I was a child. I didn’t realise at the time that people weren’t supposed to be in pain every day of their lives. I thought it was normal. This pain was manageable, and although it gave me terrible posture, it didn’t affect my life too badly.

My first flare was 6 years go during pregnancy (where I had to use a walking frame and had my wrists in splints). It was a few months of agony, but I knew it would pass. If someone had told me at that point in time, that I would be stuck with that pain for a longer duration of time, I would have been absolutely horrified.

A few years ago, I went through a pretty traumatic divorce, following a really difficult time within my family. I was exhausted, emotionally and physically. My body broke down and I developed influenza, and then developed meningitis whilst I was in hospital.

Although I can’t be sure; this is the point in time that I blame for my latest “flare”; which has been going for over 2 years.

 

SOME QUESTIONS I GET ASKED:

Do my clients know? Nope. They get all of my energy and attention (or if you’ve heard of the spoon theory – they get most of my spoons!).

Do my friends know? Most of them, now. However I don’t think many realise the extent of how I feel. I wish they did.

Do my kids know? Yes. They have been amazing, they have had to adapt to knowing that mummy can’t do many things that she used to. That she needs to sleep in, that she can’t pick them up. It breaks my heart when they ask if mummy’s head is ever going to better.

What does it feel like?  I literally have pain in every single part of my body. Sometimes I have to check my hands and feet because I legitimately feel like there is an open wound, as my nervous system plays tricks on me. Sometimes I feel like I am on fire, burning all over. Sometimes I get electric shock sensations throughout my body. Every single part of my body feels battered and bruised. The joints all burn and throb. Walking exhausts me. The lights and sounds irritate me.

 

FOR FRIENDS/FAMILY OF PEOPLE WITH CHRONIC PAIN:

  • Be patient. It’s hard to open up. It’s hard to get things done.
  • Be gentle. Sometimes even the smallest hug can hurt
  • Be understanding. Sometimes you just have to stay in on the couch, or leave that event early.

TIPS FOR PEOPLE WITH CHRONIC PAIN:

  • Get health insurance, you will need it.
  • Eat a low inflammation diet. Remove dairy and gluten and processed sugars. Limit alcohol.
  • Be aware that you only have limited amount of spoons per day (limited energy!). Use them wisely. Stop agreeing to do everything, you don’t have to.
  • Sleep as much as possible. Rest in the day. Get your feet up.
  • Mindfulness – download Headspace or similar. Learn to meditate.
  • Hypnotherapy / Binaural Beats – worth a try, these definitely helped me.
  • Yoga/Pilates – don’t overdo it, work your way up. I started with 1/4 class and now I’m up to almost doing a whole class.
  • See a pain specialist. I recommend Painless Clinic in Swanbourne for amazing service.
  • See a chiro/physio/OT that specialises in your condition. I recommend Tiffany from Back2Body in Leederville and Rachel from CBD Wellness Centre in the city.
  • Do rehabilitation – I recommend Jeremy from Western Integrated Health.
  • Try a pain pod (TENS MACHINE). If you get one from Painless Clinic you can trial it for free before purchasing.
  • Try to keep moving/walking whenever possible. Take regular breaks.
  • See a pain psychologist. Talk through it, to help you cope.
  • Outsource tasks that you can’t do yourself, or that flare you up, such as washing your hair, cleaning your house, hanging washing. (My triggers!).
  • Do your food shopping online to avoid pushing a trolley (the worst!!!!)
  • Regular stretching and trigger ball
  • Acupuncture
  • Remedial Massage
  • Supplements – get a blood test and check your levels. Most people with Fibromyalgia seem to have low B12, magnesium and B1-7. I was extremely low in all of those, plus D, so get regular infusions of C, magnesium + B’s and B12 injection.
  • Procedures – there are procedures that help;  I have had several neurotomies and cortisone injections which helps.
  • Medication – if required you may have to take medication. All react differently with different people, so it’s important to test them out under supervision. I am currently taking voltaren, ENDEP 75, aspirin, naltroxone, PEA, memantine and cafergot and anti-nausea wafers. I also use a topical cream with ketamine and amitriptyline, as well as lignocaine anaesthetic patches to my face and feet at home.
  • Botox – I see an amazing neurologist every 12 weeks for 220 units of botox into my face, head, neck, shoulders… my migraines would be so much worse without them!

 

THANKS FOR READING & GOODLUCK WITH YOUR PAIN JOURNEY!

Do you suffer from a chronic illness or pain? I’d love to hear your coping strategies… Wishing you all recover and are one day pain free!

Gentle hugs,

Bianca x

I'm Bianca; Managing Director of
Perth digital marketing agency,