When your child has very complex needs and you must spend your days contending with, “the system”, it is pretty much inevitable that, at some point, you will reach either carer burnout or chronic stress.
Depression, anxiety and mental health issues in general seem to be finally getting the serious attention they deserve and I think it is absolutely crucial that we all talk about these issues and take care of each other.
Chronic stress is defined as the response to emotional pressure suffered for a prolonged period over which an individual perceives he or she has no control.
Those of you who have followed my blogs will know very well that I am at peace with Amy’s diagnosis.
This causes me very little stress. If she is happy; I am happy.
But is she happy? No. Facebook is a very unrealistic portrayal of how things really are.
The pictures are all smiles and cuteness but the reality is… you didn’t see the five minutes before or after that picture. Things are bad right now.
For us at the moment the challenge is chronic, unexplainable crying.
For over a year now I have been advised time and time again that Amy is suffering the wrath of GERD/severe reflux.
It’s true… the reflux demon does dwell within and we medicate her for this.
However, I have been adamant for a long time now that there is also another issue that needs addressing.
Be it neurological, be it neuropathic pain, be it visceral pain.
Certainly not I, nor any of the professionals involved in Amy’s care.
Currently it seems we are dedicating our time to distracting Amy from her crying… we are not actually making her happy.
We are diffusing a situation rather than enjoying ourselves. It is hindering her development massively that we don’t know how to help her.
Inevitably when stressed I turn to the Internet. I search for mindfulness, coping mechanisms and so on.
The Internet is so quick to tell you to cut out that thing that is making you stressed.
It tells you to eat healthily, exercise more, take more time for yourself. How on earth are we meant to fit any of that in?!
My stress recently has got to the point of my anxiety medication being doubled and me eating horrendously. My brain is screaming out for carbs and sugar – quick fixes to my lack of energy.
The result is an expanding waistline which then makes me lethargic, self conscious, and even more sad.
Until we get answers about why Amy cries how she does and why she isn’t sleeping there is no way at all I can recover. The knock on effect of this is of course that I will have no patience or energy to be the mum Amy deserves and needs me to be.
This then sends me into a guilt spiral and thinking I am not doing enough.
It is suffocating. Truly suffocating.
Our, “urgent”, housing situation has me awake a lot in the night, as do feeding issues, appointments, all sorts.
On top of this I have non-Amy related issues worrying me.
Sadly this year I have suffered two miscarriages, one of which was particularly traumatic.
Nothing can prepare you for that level of grief. To take that on in addition to everything else is soul destroying, but in the long run I know I will become more resilient and learn that some things are just not meant to be.
Someone at my work joked about my working one day a week and said, "Enjoy your six days off!"
Come and live a week in our life!
One week is physio, opportunity groups, chasing return calls, special needs events, countless phone calls and paperwork, non stop research, forever drawing up meds and changing tube feeds, pediatric visits, speech and language exercises, standing frame time, collecting and ordering prescriptions, and so much more.
I can’t quite put into words just how much of our time is taken up due to “extra needs” related things.
Things like the GP taking things off our prescription list without explanation and then the amount of calls it takes to rectify it.
Just silly things like that can take a good few hours.
A day at work is peace for me.
It is a chair, it is a hot drink, it is a pleasure.
We recently went on a long trip to a city hospital to meet with a gastroenterologist. The journey itself was the definition of stressful.
We foolishly decided to get the train there. We did not phone in advance to enquire about wheelchair access. So the trip involved an out of order lift and carrying a very heavy wheelchair up two huge flights of steps.
It involved asking people to move to a different carriage so we could fit on the train. It involved parking the wheelchair outside the toilets because people saw fit to store their luggage in the designated wheelchair bay.
If that wasn’t enough we then embarked up on a two mile uphill walk in the rain to the hospital. Amy absolutely screamed and wailed inconsolably for the entire journey.
We eventually got lost and I broke down. I broke down horribly. I cried, I wheezed, I got strong heart palpitations, I felt weak, I felt fizzy, I felt I could pass out.
But we plodded on, determined to get some answers.
I arrived in the hospital looking like a wet, boofy haired, overweight Alice Cooper.
The consultant by the way was of course stunning, just to further emphasise just what a trollop I looked!
She took one look at Amy and said, “What I am seeing right now, it’s not reflux.”
She continued; “No child can be on that amount of medication, on this type of feed, not vomit.. and have this be called reflux.” I felt a huge surge of emotions.
This beautiful lady was confirming exactly what I had been harping on and on about for over a year. I was frustrated, relieved, smug, just everything. When we left the hospital I held Amy tight and I cried “I am so sorry. I don’t know why things are like this but I promise it will get better.”
So there we go. I now must get the paediatrician on board, see a neurologist, get three tests ordered at our local city hospital to confirm it is definitely not reflux.
If it’s not reflux, then what is it?
If it is reflux, Hello, major surgery.
You see, Amy is on 24 hour pump feeds at the moment and has a failed fundo.
I am reluctant to get a redo as children with severe neurological impairments are at a higher risk of it failing again.
I don’t want to put her through that - it was a hard enough decision the first time round!
Last week I collected Amy from respite. On the drive there, I could feel myself getting more and more upset.
I had spent the whole time feverishly trying to complete necessary tasks – I had no down time whatsoever.
I felt angry and upset. I calmed myself down.
“Breathe”, I keep telling myself, “It’s okay.” I got through the doors at respite and they told me how Amy had been impossible to settle the whole time.
They said they didn’t know how I was coping.
I said I wasn’t.
I broke down.
I felt so stupid.
I hate crying in front of people.
I am sure they are used to it and they were very understanding.
But the truth is – what we are doing can be really hard.
No one wants to see their child constantly distressed and not know why.
No one wants to operate on permanent burnout.
So my tips to cope? That’s a hard one. I am not sure I am the most qualified person on telling you how to cope.
I cope with coffee. Not great I know. Lots of coffee. Copious volumes. What else.
Accepting help, talking about your issues, searching for solutions at every given chance.
I used to keep my anxiety a secret – I didn’t want people to think I was attention seeking or that I was weak.
But you know what?
Sometimes your brain simply cannot make the chemicals needed to cope with a situation and we need a little extra help.
There are people out there going through so much less than us that are suffering mental health issues, it’s a very real thing.
Life is stressful.
Every now and then, I will do a big exhale and take stock of what I have got.
I have an amazing partner, daughter, dog, family and friends.
We have love, warmth, shelter, and most importantly – hope.
This journey makes you strong, it makes you more patient, it teaches you so much.
You learn not to judge, you learn empathy and compassion.
By talking about what I have been through/am going through such as miscarriages, wheelchair issues, housing problems, chronic irritability, anxiety and so on, you soon realise you are not alone.
There is great comfort in that.
Stay strong everyone.
Don’t keep it bottled up.
Love each other.
You will get where you need to be. Sometimes it is one step forwards two steps back, but just keep going.