If this is life, I don’t ever want to see Hell.

Having Glandular Fever and Parvovirus at the same time has obliterated my life as I knew it.  But I think it started a few years before this.  After months of grinding fatigue and exhaustion, losing the ability to do my job properly, losing the ability to cope as a Mum, but not losing my sense of humor, in the latest insult I have lost my sense of taste to have it replaced with bitterness.  I tried to explain it in the last post and I keep trying to explain it to people but they don’t understand.  ‘Oh you have a bitter taste in your mouth?  Hmmm brush your teeth?’  I just want to shout at them.  IT WILL TASTE LIKE I’M BRUSHING MY TEETH WITH VOMIT.  But I don’t, because that seems really foul.  It’s the truth of it though.  This is no simple nasty taste.  It’s present ALL day and it gets worse with eating and drinking.  Food tastes like vinegar and spoiled cream mixed with rancid meat.  I woke this morning with a blinding headache and not needing to go to the loo as normal and realised I hardly drank any water yesterday or had coffees or teas because hot drinks taste even worse, like drinking bile I would imagine.

My naturopath is on holidays and I’m annoyed.  She must possibly have known this might have been a side effect of the Milk Thistle (Google knows so why doesn’t she), but she gave me 15 supplements a day and went on holidays with no plan of what to do next.  I’m off all the supplements now, because I’m pissed off, that and swallowing them with water also makes me want to throw up, but my daughter seems to have a cold if last night is anything to go by.  She came in to my room and snuffled all through the night, snoring, whining, snorting.  So I should be back on them, god knows I don’t need a cold right now too.

I will take care of her.  I wish I had someone to take care of me.  This whole last 7 or 8 months has seemed to be filled with people who show mild interest and then nothing.  The GP missed the diagnosis which would have changed the way I approached those first 3 months when I kept trying to work, having been told this will probably pass in 6 weeks.  The rheumatologist said ‘not my area and don’t expect to get better over the winter’.  The specialist said ‘your GP should have picked this up and take the vitamin supplements and asked the question ‘what else are you going to do?’.  The naturopath gave me the supplements and then disappeared.

My daughter just came out of my bedroom asking ‘How’d you get out here on your own?’.  Her perception of the world is different.  We do everything together so therefore I guess we must have to do everything together.  It’s a good question though, how did I get out here on my own?

I’ve witnessed my own life be deconstructed these last months, and been made to take an active role in destroying it.  I had to realise after 3 months of insane struggle that I had to give up my job of manager of a store I built from scratch.  Then slowly I gave up every last part of my social life so that now I might see one friend once every fortnight or so for maybe an hour.  I had to give up any plans for the future, just seeing each day what I could manage when I woke up.  And eventually I had to give up the place of work I had built and move to a new job, finishing the old job and starting the new one next week which I haven’t even had time to really consider because I’ve been so consumed by the foul taste in my mouth.  And now I’ve had to give up food.  Yesterday I had 2 protein smoothies with milk and for lunch a piece of toast with cheese.  I think I had one coffee that tasted bitter.  It’s incredible how many times a day you think about food and when you can’t eat anything satisfying you spend all day feeling unsatisfied but unable to do anything about it.  On my last day at work there were lollies in the back room, they smelled glorious but I knew I couldn’t eat them because they would taste foul.  Fats and sugars also seem to taste worst and leave a film in my mouth.  Two gorgeous clients gave me chocolates as a gift and they are still here, wrapped up waiting for a better day.

You could wonder why I am not depressed.  But I feel too intensely aware to fall into a fog of depression.  Like I’ve been tortured into a sense of alertness.  I also know that in traditional medicine the liver and anger are related.  I found this description:

Anger is associated with the liver. By its nature, anger causes qi to rise, leading to a red face and red eyes, headaches, and dizziness. This matches the pattern of liver fire rising. Anger can also cause liver qi to “attack the spleen,” producing lack of appetite, indigestion, and diarrhea (often experienced by those people who argue at the dinner table or eat while driving).

In a more long-term view, suppressed anger or frustration often causes liver qi to become stagnant; this might result in depression or menstrual disorders. It is interesting to note that people who take herbs to release stagnant liver qi often experience bouts of anger as the stagnation is relieved. The anger passes as the condition clears. Similarly, anger and irritability are often the determining factor in diagnosing liver qi stagnation.

And yes I feel angry, but which came first, the liver problems or the anger?  I certainly have experienced a lot of anger in the last 4 years, not so much in the last year until this illness took hold.  The other day, I remembered my last truly happy memory, I don’t know why it popped out of nowhere… dancing in the pouring rain with a friend at Sunset Sounds music festival in Brisbane listening to the Cold War Kids play ‘Hang me out to dry’.  Brisbane is warm in January so the rain was warm, even though the sky was grey.  That rain went on to flood the city within 3 days, but in that moment I was happy and carefree.

6 weeks later my Dad was dead from a stroke that took him without warning and 3 months later I was pregnant, unplanned with someone who made my struggle harder because he couldn’t cope one little bit with it.  3 and a half years on, we’re doing a reasonable job at co-parenting but the majority of the serious planning and finances falls to me still.  Even while incredibly sick this hasn’t changed.  Of course, it hasn’t all been bad because having a child is pretty amazing, and I’ve mostly kept my sense of humour and seem impervious to depression so far.  At night, I wonder what I did wrong to be left to manage all this so alone.  So may people have a guardian angel who gives them comfort, where is mine?   My Mum and aunty do what they can to help physically but where is the one who helps me cope with the emotional strain?  The daily despair, at it’s absolute worst right now.

6 thoughts on “If this is life, I don’t ever want to see Hell.

  1. escharae says:

    Oh dear, I am so sorry to read all this. I wish I could give you a hug. I imagine how eating and drinking might seem like the last thing you want to do, but you need to make an effort in order to keep hydrated and strong to fight. It’s wonderful that you’re holding on to your sense of humor and not falling into depression. Although I do have a crazy sense of humor most of the time, my mental health is a real struggle to keep stable. So hold on to it. The anger – and I understand your anger at your health care providers, because I went through many similar situations – will subside. Maybe not disappear completely, every now and then you will get angry, but it will fade. And I wish I had an answer for the loneliness part, but the only thing I can say is that you’re not alone feeling that way.

    Liked by 1 person

  2. CJ says:

    Thank you for sending a message. I woke this morning with restless legs, a sure sign of dehydration so I will definitely force myself to drink more at least today. I thought I was doing ok but when you add up all the coffees/teas/herbal teas it’s a lot I’m missing out on. I hope this is rock bottom. I don’t see how much worse it could get!


    • CJ says:

      Not recently. A long time ago – maybe 15 years – I regularly attended Tai Chi classes (that is what you mean right?) – I wish I remembered some of it because I feel like just the gentle stretching might not be bad. The suggestion of graded exercise is not a workable one for me. Any exercise seems to wreck me, as I’m remembering today… Paying for 2 days ago vacuuming efforts 😁


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