• It's been a hard road, but its my road

It's been a hard road, but its my road


I’m Ali. To look at me, I’d guess many would make the same assumptions as most when you meet me – a very average, happy, healthy, middle aged looking lady. Some have even judged me as being lucky. Far from it.

The only correct thing in all that is being middle aged – the rest has simply from the hell and hard work I’ve gone through, and effort I put in each and every day. Born late 60's, our family life in the 70's and 80's may have seemed somewhat typical, but we knew we were the loud family in our street. My sister and I would even sing 'Our House' by Madness with some pride. We were the family people would look twice at and wonder about. And although I had difficulties that none of my family have ever really understood, I'm still grateful for learning not to be afraid to speak out, even if it brought unwanted attention.

There may have been some benefits to being the second and youngest child, but in a family trying to bide by some very old traditions, being constantly treated as though I'm much less worthy than everyone else under such a strict environment, still resonates. Many things about this world perplex me, so I try to resolve them. When younger, much of my curiosity was met with "because I said so and for no other reason", which probably aided me into the strategic thinker I am now.

At school I was teased often, in fights and even beaten up by some boys on the way home. At Auckland boarding school while out with a friend roller-skating, a group of girls were picking on us, so I got a shiner from the group beating administered from standing up to them.

In the late 80's in Wellington, trying to work hard to make my parents proud, I found myself in another abusive relationship that saw me needing regular visits to both counselling and the hospital. I wanted to break free from it but with the consequent stalking after the break up, my inability to cope, work running out and the support for my personal recovery cut short, I ran away overseas. Back packing on my own, I became flippant, non-committal and was burning to be stronger and better for the troubles that hindered me. In Australia I received a worrying letter about the health of my father so wanted to see him in case his surgery was on the wrong side of 50/50. Even if my parents thought coming back was the wrong decision once there, as I lay in my sleeping bag on a camp stretcher, rather poor, in an empty old dark studio flat and with only a bag of possessions (as the helicopter was spotlighting overhead trying to catch the person who was running around the property outside) I still thought "this is interesting, guess it could be worse".

Living in Auckland, at karate 5+ days a week, swimming, running, biking, building on my computer skills and career, fighting to achieve, I went to see my doctor about the inability to shake a flu/virus. As out of the blue, while running up a hill, things seemed normal but I was hardly going anywhere! The energy that was usually there, as you'd expect when you wake up each morning, began to slip away each day. This was just when I met my now husband. As my body continued to beg for energy, to shake off the constant lethargy, nothing was workingand all I did was gain weight... lots of it.

Working 16 hour days in a highly technical role as a woman in the 90's was hard enough, let alone cleaning up another colleague's mistakes. I ate, was getting frustrated, confused and building a solid distaste for the world so ran away again. Mum's cancer brought us home from Aussie again a couple of years later though. Shortly before heading back to NZ, I was told by a locum I was being treated for CFS/ME. The onset being that unshakable flu/virus.

Over the following 10-15 years living in the South Island, things progressively deteriorated. Especially so just after buying our first house and getting married. I’d been harassed out of a job, Mum died, so we nearly lost the house, my sister was diagnosed with cancer and then Dad... I’d become a prisoner in my own home for a decade while we began to juggle the ever increasing list and dosages of pharmacy medications to help me as the stressors mounted up. Somehow, we had got a small break negotiating a move into a more suitable house, had a great Doctor and having regular counselling at the local DHB for a couple of years which helped. But Dad ... he had got himself stuck into the embrace of a con-artist.

We knew there was something wrong, but by the time we'd found out what our step mother was doing, not long after, Dad died. My sister had also been diagnosed as terminal this time, so the trauma over that 5 years to sort out Dad's mess was immeasurable. I was living a personal hell.

Every day (if I’d had any sleep) I woke with anxiety because I didn't want to check emails, talk to anyone, see anyone or do anything. I just wanted to be left alone to shrivel up and die quietly in a corner – a familiar feeling to me by now. The torment of living for others was literally killing me. I had a heart attack and suspected stroke. My Doctor got me back into the Mental Health system with some urgency as I'd never managed to grieve for the loss of either my father or aunt who had both died within a few months of each other. And after 20 years by this stage, I'd never grieved for the loss of all those physical abilities I'd once had, that had now been stripped from my body.

From walking in to the counsellors waiting room, wishing I’d disappear into the walls, twice a week and every other trip, was worth every effort as it was all helping me to not be so afraid. Each time I needed to go, I'd just do something to help edge me closer to the door, closer to the car, further down the road, until I was there, in the waiting room. From kindness and gratitude, I then learned how to be a friend to myself, something I never even knew existed. The counsellor taught me the value of getting even very minor things done and how not to let that voice inside knock you down constantly. Most of all, in time, I began to believe in myself again where I didn't have to compromise myself for the sake of others anymore. Everything I learned was very important stuff, as last year, after going through another major health issue, without these tools, I wouldn't have made it.

So mid 2018 the combination of long term high dose medications, virus and misinformation over a medication left me going through a full chemical withdrawal for over 2 months. It had taken all serotonin and dopamine from my system for weeks - so I literally didn't have the chemicals, ability or support for any happiness... "like all hope had gone from the world". Sure, people can relate to having a gallbladder removed, cysts being detected etc but you can’t just ‘take a pill for that’ and expect it to go away. Just like all my other array of health issues including my mental health... and I know that looking after that impacts my physical health. Some don't even regard any of my health conditions as significant or real and are even sceptical about my heart condition and only see something like my sister's terminal status as more significant than multiple chronic disorders – as if they should be compared in this way!

This daily judgement I am faced with intrigues me as my sister is still surviving as terminal after 5 years, has tumours everywhere but is still much more able than me. When I go out, people confidently and automatically like to announce their observation as to the state of my health by looking at me. It seems to be a given that if you can, you should. And if you can’t, there will be judgement. Prejudice and bias is rampant as everyone has an opinion, a voice unfounded by fact.

So a year later, my list of conditions has been added to significantly and is now quite staggering. Even one of my conditions can have the affect of being completely incapacitated and leave you bed ridden. The fact that I’ve been struggling with mental health all my life also, with the accumulated health issues I have now, means I know the colour of prejudice and bias, but I also know how to greet it and say, 'goodbye'!#

So, for the curious, what health conditions do I have?

  • Asthma
  • Inflammatory arthritis
  • Fibromyalgia
  • Myalgic encephalomyelitis / Chronic fatigue syndrome (ME/CFS)
  • Lupus
  • Clinical depression, PTSD and other acronyms
  • SVT’s – heart condition
  • Vestibular migraines
  • and lots of associated symptoms like chilblains, irregular BP, light sensitivity and a multitude of
    gut microbe issues that limit me to eating only about 20 items with little consequence.

No surprise, as time passes, I find myself always problem solving, trying to help but usually end up being the one taking the fall, so I’ve learned to say ‘no’. My curiosity and ability to problem solve helped in my career but wasn't often appreciated, mostly misunderstood or simply taken for granted, still is now. The physical impact, for me, has been less of a factor than what is / isn't said and the emotional abuse I've endured. But I remember, each and every day I’ve never liked being a victim so just do what I can, it’s ok.

So each day, I try to do at least one thing, especially something that I know that will help me - and if it helps someone else too, that’s a bonus.

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