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.

Maybe? Not Yet

When is the right time to start using a wheelchair?

It’s something I have been contemplating a lot.  You don’t want to start depending on one too soon.  But then, should you increasingly limit what you can do simply for lack of one?  And what to do with the pride factor?

My mobility has been on the decrease. I can walk short distances, but even walking up to my daughter’s school, just around the block, is now too hard.  I use a cane most places I go.  It helps me a little with balance, gives me something to lean on when I feel weak and has a little fold out stool so I can sit when I need to.

Walking anywhere, with the cane, or without is exhausting for me. It takes the lion’s share of my energy. I can still drive, which I am grateful for.  It’s just that doing much of anything once I get to my destination is so hard.  I’ve been using the complimentary scooter at the mall for the last few months, it’s been a big help.  But when should I start thinking about my own wheels?

When I went to Adelaide last weekend, I organised a hire chair for the duration of my stay.  I didn’t want my limited mobility to stop Erica and I from getting out and enjoying the city. I also didn’t want her to have to push me around, I’m an independent sort of person, so I wanted to ‘drive’ myself.  Walk on Wheels didn’t have any scooters available, so they hired me an electric wheelchair.  I figured it would give me the perfect opportunity to try out using a chair for future reference.  It was vastly superior to a scooter in terms of manoeuvrability; turning on a dime. Somehow, because it is smaller than a scooter, it is less conspicuous too.  It cost me $25 a day to hire the chair, plus fully refundable deposit and a delivery charge. I had the larger “Maverick” electric chair, I’m a bit of a big bird. It was the perfect size for me.

Me with Maverick(3)

The Maverick and I got acquainted very quickly!  So easy to move around, steering is a doddle and the joystick style controls really are intuitive. I liked the little horn.  It wasn’t so loud it scared people but was enough of a beep to let them know someone was there if I needed to discreetly get their attention.  I took the chair for a spin down to the tram station.

Trams in Adelaide are perfectly set up for people in chairs.   The stations are all ramped, and once on the platform, you just wait on the little blue mobility park.  As the driver approaches, he waves to let you know that he’s spotted you.  Then he pulls the tram up, hops out of his seat and lowers the ramp (some trams have folding ramps and others have pull out ramps).  There is a spot in the tram for the chair and an accessible stop request button right next to your park. The driver asks where you are hopping off and returns to assist you off the tram when you reach your destination.

Victoria Park Tram Stop

During my stay, I took the tram to Glenelg (about forty minutes away), Black Forest, and to hop around the city centre. Because I could power down my chair while in the tram, I was able to save battery power too. The excellent tram system saved me and my chair a lot of energy!  I was really impressed with the warm and friendly staff on the Adelaide Metro Transport system.  I’m sure it isn’t policy, but every time I went to pay for a ticket I was waved away. So nice to be treated with such kindness when you are staying in a foreign city!  Whoever complained about Australians hasn’t visited Adelaide!

I encountered a few problems with accessibility along Jetty Road in Glenelg.  It’s a shopping street that leads to the famous jetty and is lined with gorgeous shops, at least half of which I couldn’t get into with the chair.  But Adelaide Central caters beautifully for people in chairs.  Almost all of the shops I went to in Rundle Mall were easy to navigate without damaging the furniture!

I felt liberated in that chair. I could go where I wanted to go without worrying that I would ‘crash’ mid outing and have to get horizontal in a hurry. I felt free to move at a pace that was more natural than my own snail’s pace.  I could relax and enjoy my surroundings more.  It was slightly strange to be short though!  I am six foot tall when I stand on my own two feet.  But it was so good to be able to MOVE distances for longer. I loved it.  Being in a chair is still taxing, so you still need to budget your energy, once you are used to how much it takes. But oh, not nearly as spoon bending as trying walk distances. It felt so good to feel part of things in a much more active way!  Now that’s ironic.

We have decided to wait and see what happens in the next wee while.  In spite of the huge difference in what I was able to do when I was in a chair and my happy experience of things in Adelaide… I am just not ready yet. Our big hope is that the steroid therapy and possible IVIG makes a difference in the area of muscle weakness and neuropathy.  If that happens, I might be able to be more mobile on these legs of mine and the whole need for wheels might diminish.  Here’s hoping!

If it doesn’t work and things continue to decline, we’ll just have to find some snazzy wheels for me to buzz around in.

If you have Dysautonomia, or another medical condition that requires you to use mobility aids, do you use a chair? What made you decide it was time?  How do you feel about it?  Does it change the way people relate to you?  So many questions…!

FREEDOM!(1)