How it is…


As talking in my first post what I want from my blog is to be relatively honest with my life – how I feel so others with Chronic Pain can feel less alone with their thoughts and their pain. I also want to be conscious of not making my blog all doom and gloom because I think my family and friends need to know this.

In August I was fortunate enough to be placed in a 10 day Multidisciplinary Pain Centre program run by the Royal Brisbane Hospital to help me with all aspects of life. Suffering with CRPS it seems that you go to the top of the list when it comes to appointments, if the disease is treated earlier there is more chance of remission. It was a stroke of luck that I was in the office with the Pain Doctor, this was only my second visit and to be quite honest I really didn’t feel a connection the first time. Since seeing her the first time I was now taking a huge amount of medications and not getting any benefits at all. I can honestly say that I really may have only met a tiny amount of people that just instantly rub me up the wrong way – this Pain Doctor is one of them. When I told her my pain was increasingly more and started to name the opiods I was on she threw her hands in the air “ala Scarlett O’Hara Gone with the Wind ” style overacted movements as if taking the opiods was affecting her wellbeing. “No no no, how many times have I got to tell you” again her hands are in my face. She automatically sent me from 0-100 in fury with no chance to even edit the words that came out of my mouth so I shouted at her “Well what do you f&*$%cking want me to do!!” And burst into tears. For those of you that don’t know me that is just not something I do, I am not an angry person but this woman spoke to me like a 3 year old and she just sent me over the edge. I cried and cried and I think that was the first time I had actually had a real cry…then I couldn’t stop (as it turned out I cried for the most part of 10 days!! Talk about opening the flood gates.)
The outcome was positive, their had been a cancellation for this instay program and if I could get myself to the hospital on Monday to stay for a fortnight, she could get me in. This was the Friday – I told her I would do anything to be there. Later looking back as much as I just can’t stand this woman she does go above and beyond for her patients.

The 10 day stay is not a cure it is learning to get as much happiness from you life as you possibly can. During the stay I was also weaned safely off the opiods (Targin and Endone) I was taking. Multidisciplinary care involves many different departments setting up a personal program for you to follow. It involves Psychology – dealing with the grief of a life lost and day in day out pain (for me very important), Physiotherapy – a tailor made program to keep your body limber and moving (these exercises total about 2 hours a day) Medical – setting up anti-convulsant drugs to hopefully relieve my Neuropathic pain (never worked), Mediation (this blows my mind how much pain you can relieve by Meditation) and Art Therapy (finding some fun in your life.)

The program was amazing, completely exhausting as the classes you had ran from 8.30-4.0 everyday. I decided that I would go home and continue to keep this program as much as possible because this is all you have. No cure. I also used a TENS machine on loan from the hospital and for me this relieves an enormous amount of pain (phew!) I learnt so much but I was also diagnosed with CRPS during this time so being in hospital for 10 days gave me a chance to grieve safely without having to scare Jacob as he was living at home with my mum. I say to this day, one of the very hardest things about being a sole parent is that you don’t have the luxury of being able to fall down and cry. You are the captain of this ship and if you buckle it scares the crew. I try to set an appointment for my crying when he is not around but I can’t “Cry on Demand”

Art therapy is also very important, to be able to find a hobby to bring you happiness and to build this into your day or every second day. I so very much miss knitting, I have tried to pace in small amounts of time but the pain is just too great. At present, I am making cards and just loving it – it brings me joy.

To find joy in the smallest things and blow them up as big as you can. Mindfulness staying in the present moment as much as you can. The past is the past and you will never be able to predict your future so spending too much time worrying about the future is futile.

I want my friends and family that don’t see me regularly to know that I still laugh a lot, I still crack jokes and mess around – maybe no where near as much but I still have remnants of the person I used to be. When I have severe pain, it doesn’t cause depression funnily enough but that is because the pain is so severe that trying to recall your name is so very difficult, there is no room to analyse. When a severe flare comes along it really is a few days after it has settled that you may look back at it. After a flare it’s a bit like the flu, you still feel shaky and weak for a few days after.

You could also assume I have too many hours alone which must lead to lots of hours thinking about my condition. Untrue. By the time I have done my Physio, Meditation, Exercise (bike, walk or Hydro) paced myself to contribute to dinner there really is not a lot of hours left in the day to contemplate my life. I do not watch TV (dunno, feels lazy watching tv during the day).

Mentally – I am doing pretty good. I get happiness out of the smallest things these days, watching how happy my doggy is when I throw the ball for him, my beautiful flower garden, reading, cardmaking. This is a lesson that everyone needs though – I just wished I could have learnt it a different way. You know this really could be the life – if it wasn’t for feeling so bloody shocking all day, everyday. Unrelentless. This is the holiday you always wanted from 70 hours of work a week but if you think I am lucky – I don’t ever wish anyone this amount of pain (well 2 people but that’s it::) – this payoff for being home. I would chose to work and to contribute and to have some money and to have a life where you go shopping, visit your friends, go to a bbq, socialise, take holidays, enjoy being fit.

I did a small course in Mindfulness and I really believe that this has been an enormous help in keeping my mental state in a better place. Practice practice practice.

There is laughter, there is silliness and there are moments of joy – somewhere deep down the old me is still here and I will hang on to her with all my might and one good hand 




1 Comment (+add yours?)

  1. chiquitar
    Feb 02, 2013 @ 15:25:51

    Great post. I love that you yelled at the doctor. It isn’t like we are taking the opioids for fun–I read a cool study that came out recently that many people who take opioids dislike the way they make them feel. These people have pretty much ZERO chance of becoming addicted. I’m one of them. We take them because we have pain and they help. Your inpatient program sounds awesome. Wish we had something similar here; I’ve gradually hit most of the things you listed (everything but the art therapy) but it sure would have been nice if I’d been able to find them all at once when I was diagnosed, instead of over the following years, with most of the care paid out of pocket!


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