Today marks an exceptionally important day for me. Let me tell you why – Not many of you know my story as I’ve kinda been avoiding it a little, cause to be honest, it’s not a very pretty one………not to mention, that my lessons learnt may be confronting to some. Others of you might not be ready to hear what I have to say and that’s ok – that’s why it’s ‘your’ journey, because it’s just that – YOURS! Yours to travel along at your own pace, yours to discover and learn, not to be forced off road by me. I don’t want you to think the same as me, I just want you to THINK!
Ok, here goes. It’s going to be tough, but I’ll condense my story into as blog friendly a version as I can; for all the gory jaw dropping details you’ll have to buy the book that’s on it’s way!
Fourteen years ago after the birth of my darling Seth, I was struck down with extreme exhaustion like I’d never experienced….. this was more than just, I’ve got a newborn baby sort of tiredness. I know what that feels like, this was my third child – Something had shifted and I was different. Due to an unrelenting fatigue that made the simplest of everyday tasks seem mountainous, I was an emotional mess and not coping.
So, I went to the doctors, to my GP, whom I’d been seeing for ten years. After fifteen minutes with me, he diagnosed me with post natal depression. There were no tests, no physical examinations or enquires into hormone levels, nutrition, sleep or any part of my general health. He insisted that the all over body fatigue and inability to think clearly was depression. He then told me that if I wanted to be a good mum, I will take the anti-depressants. I knew nothing about mental health, I knew nothing about anti-depressants. I was offered no other alternatives and was told this is what I must do. My children were my world. Yes, I wanted to be a good mum. So I did. I took the medication prescribed.
The drugs did not improve my physical or mental exhaustion, so the doctor increased the dose. Still no results, so he increased the dose again. My mood improved a little, although what happened next I could never have imagined. Who knew that a choice to follow doctors orders would result in such pain and horror. Like a thief, it crept in and stole twelve years of my life. Twelve years of motherhood I can never retrieve. I had what doctors call a manic episode. I started behaving completely out of character. Like, I’m talking crazy as bat-sh*t stuff that you only see in movies. My family watching in disbelief wondering, where the heck did our Melissa go? I became erratic and angry with uncontrollable explosive agitation, which sometimes led into complete psychosis. I would go sometimes up to five days without needing any sleep whatsoever, I felt no tiredness but instead I was amped looking for adventure in all the most inappropriate ways. My enthusiasm and excitement disproportionate to actual reality, which left those around me speechless and unable to relate to anything I said or did. From this mania I would then crash into deep depression where all I could think about was how I could kill myself. I never knew each day what mood I would wake up with. No amount of anything I did could control it. This cycle continued up and down with no reprieve.
For most of these years, I was hospitalised every year, sometimes more than one hospitalisation a year, often for months at a time. I was told I now had bipolar disorder, not post-natal depression. Doctors said there was no cure, and that I would be on medication everyday for the rest of my life. The medication made it so I couldn’t think, I was a walking zombie. The side effects were horrendous. What’s worse is, that none of these medications helped. The fatigue I initially saw my doctor for never improved, in fact it worsened to where my only way of survival was to live a push crash cycle. More days a week were spent in bed than out, with crippling exhaustion and aching limbs. I was constantly being given a new drug to try. Which meant drug withdrawal each time. My Psychiatrist told me I had treatment resistant depression and would need to have electro-convulsive therapy. Yes, they still do that. Today doctors are still strapping electrodes to peoples brains and purposefully giving them grand-mal seizures. This experience was more terrifying and frightening than I can even put into words. I am nauseated just thinking about it. My beautiful happy life was now a distant memory and held no resemblance to my now reality. Life unmanageable. I couldn’t work. I couldn’t maintain friendships. I was house bound. I was a walking corpse.
I would often challenge my psychiatrist that he must be missing something, there must be something else wrong. He had prescribed me every class of psychiatric drug and nothing worked. I was told I was ‘treatment resistant’. Yet, no one, not one, ever questioned the treatment. I researched and researched with my barely functioning fried brain. My spirit knew this was not right. I desperately wanted to try alternative medicines and treatments but my psych would just scoff and call it quackery. Two years ago, when the last drug he insisted I try caused me to go psychotic, endangering my life. I said enough.
It took me five months to get off all the medication which comprised of a hideous mix of antidepressants, antipsychotics, lithium and benzodiazapines. I was told that getting off these meds would be an impossible onerous feat, comparable if not tougher than quitting heroin. The difference being that if I was to detox off heroine, I would be applauded and celebrated. I would be taken to a detox centre that would encourage and support this process; unfortunately this support is not the same when coming off prescription drugs. Withdrawing off such large doses of psychiatric medication is extremely dangerous. I knew this. I knew I couldn’t just go cold turkey. I knew it must be done under medical supervision. There must be a plan in place. Despite presenting my doctor with a well researched comprehensive plan, my psychiatrist was against it. My husband was frightened to death. I slowly weaned one drug at a time. For months, I suffered nausea and spontaneous vomiting anywhere any time without notice, diarrhoea, abscess like acne, nightmares, hallucinations, dizziness, heart palpitations, constant suicidal thoughts, irritability that no amount of happy thoughts or will power could control. I was hospitalised twice during this five month withdrawal period. I had no support from medical staff, rather my endeavours to become drug free were quite the joke. Nurses told me to ‘just go back on the meds and all this will go away’ – ” I don’t know why you’re insisting on wasting your and our time. I’ve seen it before, you’ll be back on the meds and wishing you hadn’t put yourself through all this.” My body was screaming at me to give in, but I didn’t……. I persisted and today is my two year anniversary of 100% drug free.
I have no suicidal thoughts, no psychosis, no manic episodes – all gone. Mentally the improvement it incredible. Unfortunately I still suffer with the extreme fatigue, neurological and cognitive impairment and pain. I remember many years ago telling my psych about this pain, although back then it was only mild, he was confident it also was a symptom of my bipolar. I remember saying to him, but I wasn’t depressed this week, I just couldn’t move. He would dismiss it as depression.
Since coming off medication the pain has increased considerably. I didn’t understand why this was so, until a new doctor I’m seeing explained it. The anti-depresants and anticonvulsants (they give epileptic meds to bipolar patients) were actually providing pain relief. Doctors sometimes prescribe psychotropic medication to aid as pain relief for inflammatory neurological diseases such as multiple sclerosis. So unbeknownst to me, it seems these meds where in fact helping me but not for the reasons they were prescribed.
As it turns out I was misdiagnosed for all those years. Twelve months after coming off the psych drugs I was finally given a correct diagnosis of Myalgic Encephalomyelitis, a complex multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME. Many Australian doctors still use the outdated term Chronic Fatigue Syndrome.
During all those years in and out of psych wards, I in fact did not suffer from bipolar disorder. Instead the mania, depression and psychosis were all induced from the anti-depressant medication. For twelve years, I was suffering from a toxic drug reaction, not bipolar. It turns out my fatigue was not depression nor was the pain, brain fog or sensitivity to noise. This in itself was a lot to get my head around, then to be told that the best possibility of recovery for M.E. patients comes when given an early diagnosis and treatment. Yep, this is enough to make me want to scream. I could so easily slip into anger. For years and years I had prayed and pleaded with God for a cure, for a miracle, for healing. And now to find out I was actually poisoning myself everyday! So how am I not a completely resentful, bitter ball of anger every day?
Well, for a start I could have continued on the path that I was on for the rest of my life. I lost twelve years, I could have lost more. I have become a servant of gratitude. Somedays more than others; Post-it notes plastered around the house, help remind me on those not so grateful days when I actually want to say screw gratitude.
So —what I’m discovery is that finding a cure and healing are two different things. A place of healing for me is letting go of the lost years, forgiving myself and those that have harmed me, forgiving those who chose not to stand by me and being content right here and now. Accepting that even if nothing ever changes, I will be grateful. When you’re ‘medically challenged,’ so much of your time is spent thinking about the broken defective parts of your body, the pain, the fatigue, the brain fog; in contrast to this focus, I’ve introduced a new habit into my life. It can be done anywhere any time, even when I’m bedridden and yuk I try and do it. So what I do is, I scan my body and find a wonderful part of my body that gets all ignored because it’s working brilliantly. I tell God how grateful I am for this part of my body that is pain free and doing it’s job so beautifully. I’m telling you, it really changes your outlook. I feel lighter and a little less shackled when I do this.
I’ve decided healing is not being devoid of disease, its realising I’m bigger than disease or a diagnosis. It’s not about the longing for the cure and the end result… it’s here and now and finding something to love in this very moment. Today, in this moment, it’s gratefulness that I had the strength to stand up for myself when many others cannot. Happy anniversary to me.
Kisses, Meli x
ps. A big shout out of gratitude to the beautiful Kim Morrison for inspiring me to love and give thanks for my body despite its defective bits. Your body boost philosophy is a devine gift, thank you x