Sarah Bowen: So, I must be fine, right?

Today on the blog Sarah Bowen is talking about Scoliosis, surgery and chronic pain. When I started up the ‘Meet my Peeps’ series earlier this year, to broaden the sharing and to introduce you to some of my favourite people, I knew that you would like them as much as I do. Many of my peeps, like me, have invisible illness or disability and all have chronic conditions.  Things that just don’t go away.  All of them are awesome people with relatable stories.

A lot of my ‘peeps’ are actually people I have never met in person.  We meet online, in the patient forums, on portals related to chronic illness and also, in my bloggers group.  Sarah is a fellow Pipster (that’s what we call the alumni from the Blog With Pip course) which is how we became blogging friends.  She has a gorgeous blog called The Routine Queen where she writes about all aspects of being a mum and something dear to her heart, organisation. I first bonded with Sarah when she wrote about the challenges of being an introverted Mumma.  You can read her post on that, here.  Then we got talking and I discovered that Sarah too, has an invisible, chronic condition.  She writes here about living beneath the radar.

Do you suffer from chronic pain, too?  Come and say hi!  Here’s Sarah:

Many people are surprised to hear that I

Seven years ago, when I was twenty five years old I had major back surgery for scoliosis, a term used to describe curvature of the spine. The decision to have the surgery was a big one. I was told if I left my back as it was it would continue to get worse and could end up causing major health problems (think squashed organs and a wheelchair). But the real deciding factor for me was that the severity of the curve in my spine would make it difficult to carry and naturally birth a baby, something which I was looking forward to in the not so distant future. So the decision was made to have the surgery. Little did I know how much it would change my life.

Recovering from the surgery was intense. Almost three weeks in hospital and three months in a full back brace. At the beginning I couldn’t walk more than a few steps assisted before I was exhausted. Sitting for longer than a minute would leave me in tears. I couldn’t brush my hair, have a shower or go to the toilet unassisted. It was hell. I was told that after six months I would be ‘back to normal’ but its six years on and I’m still waiting.

Many people are surprised to hear that I(1)

There are lots of questions surrounding the surgery and my recovery. For example, I was told a small portion of my rib would be taken to gain access and help ‘fuse’ my spine together. I was told it would grow back (as the front of your ribs are actually cartilage not bone, they can regenerate). What actually happened was three of my ribs were removed and they never grew back.  There was some other complications and lasting nerve damage. I am in pain every single day. Obviously not as intense as the first few months following surgery, but still, the pain is there.

I spent years looking for the answers. Why did this happen? What was causing the pain? How could I make it stop? I went to chiros, physios and osteos. I tried different forms of exercise and natural therapies. Nothing worked. After many hard days I had to face a hard realisation. This was how my body was now; this was how it was going to be.

Many people are surprised to hear that I am in constant pain. Because I rarely talk about it people assume I’m fine. I manage to live a normal life, I work, and I participate in normal activities so I must be fine right? I think for people that suffer from chronic pain there is a certain point where you just learn to live with it, your really don’t have any other choice. And so you get on with life. You stop talking about it because you’re sick of talking about it and you’re sure everyone is sick of hearing about it!

Since my surgery I have become a Mum. I have a three year old boy. When I was pregnant I was almost pain free (must’ve been those hormones, someone please learn to bottle that stuff!) but it quickly returned after giving birth. I’ve had to learn to manage. I could never carry my son on the right side of my body, it’s not easy for me to bend down and pick things up from the floor (not fun when you have toddler!) And I have to grit my teeth when people give me a hug because it really hurts! There are days when I’d love to just lie in bed with a heat pack on my back but of course when you’re a Mum you just can’t do that!

Cold weather is a killer, my body kind of just seizes up. Needless to say I’m not loving winter in Melbourne at the moment! I have days when I have a sook to my hubby about it, I might mention my back is particularly sore, on those days the pain is probably more of a 7 or 8 than its usual 5 out of 10. But most of the time I remain silent because I figure there’s nothing that can be done. I try not to think about it, I try to focus on other things and keep busy, that’s my way of coping.

Another thing that helps me cope is knowing I’m not alone. So when I came across Rach’s blog I was inspired to send her an email, I just needed to tell her ‘I get it’. I can really relate to so much of what Rach shares here on her blog. So I was extremely honoured when she asked me to share my story with her readers. And now that I’m here in this space I’d love to hear from you.

If you live with chronic pain how do you deal with it?

What things help you cope?

What have you discovered that helps you both mentally and physically?

Jess Cochran: Mind and Body

Two weeks ago, another patient from the Dysautonomia community in the USA took her own life. Suicide is so hard to talk about, as is the mental illness that can make it appear like a good solution. Today in my Meet My Peeps guest series, Jess Cochran talks about her own battles with mental health.  I applaud her willingness to discuss such a difficult aspect of life with chronic illness.  Patients who suffer with long term illness may not always address their mental wellbeing in addition to their physical.  Some may be trying and not able to access the help they need.  It’s an area for vigilance, for patients, their friends and their families.  In this piece, Jess discusses the frustrations she experiences with mental health services where she lives in Melbourne Australia. Please find her helpful list of links at the bottom of the page.  If you are also in Australia, and you or someone you know is struggling, the links Jess has provided may just make the difference.

Have the discussion.  Make today the day you talk about it.  Life is a precious and valuable thing.

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I often get frustrated and upset, not

I’ve been on this trolley in emergency for so long now, watching the nurses flit backwards and forwards. Feeling a jolt in my stomach every time one passes by, hoping that there is an update…that finally I might get off this hard trolley. I was brought in by the mental health team to be monitored and assessed while they tried to get me a bed somewhere longer term. I’m quite used to processes like this; lying in emergency has become a regular thing over the last few years. Sometimes it is for monitoring physically due to heart trouble, or injuries from falls.  Sometimes for my mental health. I know the drill. But I had never been there for this long before.

Being brought in wasn’t a surprise, I had been struggling quite a lot mentally. There was the body breakdown I had been experiencing, mostly from my POTS (Postural Orthostatic Tachycardia Syndrome) but the pain had been eating away at me too. I have multiple conditions. I am usually an upbeat, chirpy girl. But I was was slipping into a low depression. I had reached out for help and this emergency stay was he first part of getting a mental health admission sorted. However I didn’t expect to be here this long.

That worker bee, whose job it was to seek out hard-to-find beds, had been working hard. But there had been no luck. Difficulty finding a bed wasn’t unexpected, but being in limbo for all this time in the emergency ward was. I’ve been dealing with the psych system from the age of 12; my first admission was in my first year of high school and then things had continued from there. I knew only too well how it all worked. Though I do notice, in the last few years it has become much more difficult.

Since my wheelchair came along my admissions to psych have become very far and few between. First I started to get turned down for admission with the main psych hospital where my treatment has been for 10 years.  That was on the basis that I am disabled and too ill (even at times when my symptoms were not so severe and my physical health stable). Sometimes it seemed like inpatient psychiatric units chose to not take on patients like me, with complex physical illness (even if managed) and in particular, mobility aids. It’s seems that people like me get put in the too-hard-basket. Perhaps they expect that some other place will take on the patient. So far I have only come across two psychiatric hospitals that take on people with mobility aids, both of them being private. This is extremely frustrating and not good news for people with mental health needs who fit in the disability category.

When I have spoken to many fellow sufferers of debilitating chronic illness and/or disability I was initially glad that I wasn’t the only one that experienced a massive fluctuation mentally.  I wasn’t alone and that made me feel a little comforted. I often get frustrated and upset, not just for myself, but for others like me. It’s hard to deal with the fact that sometimes, for some people it all gets too hard. Almost a year ago now I lost a very dear friend who had been battling with debilitating illness in similar circumstances; she found it so tiring and frustrating that nobody out there was able to ‘hear’ her… and most of all help her. She slipped further and further into depression with only a handful of people knowing it was happening. And then, just like that I had a call telling me that she had gone…another life lost to a system that doesn’t always know how to respond to complex cases.

In a society that has been talking about the strong links between mental health, physical health and emotional health I find it very shocking that things are the way they are.  Even with the strong messages out there, to keep an eye on yourself, to ask for help; there doesn’t seem to be accommodation to meet the needs of people with complex conditions who ask for help.

We shouldn’t have to be scared of reaching out for help in fear of being stuck in limbo in a busy Emergency ward, trying desperately to find somewhere to go, or even just to be put on the waiting list. We shouldn’t have to lose friends and fellow sufferers not so much because of the battle they are having with their body but the battle they are having with their mind and complications of a system that isn’t helping. Mental health care is vital for a person who is dealing with chronic illness. Whether that be support from friend, family, fellow sufferers or psychiatric services, it shouldn’t be the case that you have to put on a brave face all the time.

The time for change is now, its all very good for the medical teams to talk about caring for MIND, and body…but can they put this theory into real action?

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If you, like Jess, live in Australia and are worried about yourself or a loved one please contact one of the following for support:

Black Dog Institute
Information on symptoms, treatment and prevention of depression and bipolar disorder.

Carers Australia
1800 242 636
Short-term counselling and emotional and psychological support services for carers and their families in each state and territory.

Headspace
1800 650 890
Free online and telephone service that supports young people aged between 12 and 25 and their families going through a tough time.

Kids Helpline
1800 55 1800
A free, private and confidential, telephone and online counselling service specifically for young people aged between 5 and 25.

MensLine Australia
1300 78 99 78
A telephone and online support, information and referral service, helping men to deal with relationship problems in a practical and effective way.

mindhealthconnect
An innovative website dedicated to providing access to trusted, relevant mental health care services, online programmes and resources.

MindSpot Clinic
1800 61 44 34
An online and telephone clinic providing free assessment and treatment services for Australian adults with anxiety or depression.