Flat

Treatment week 20 of 24...so close to the end of taking these Direct Acting Anti virals, laid out flat on my back in pain, for the past week. Sacral area of my lower back in spasm, unable to stand or walk or sit up....one of the side effects of the medicine is joint stiffness/pain and the whole time on treatment, I have felt more 'clicky' or 'crunchy' in my joints.

I do suffer from an intermittent sore back and normally I treat myself with herbal anti inflammatories, circulatories, nervines, smooth muscle relaxants and mood up lifters;

I would prescribe myself;

• ·      High doses of turmeric powder,
• · Tea of hypericum, rose, chamomile, lavender, valerian and lemon balm.
• · Tincture of meadowsweet, lime flowers and hypericum.
• ·      Epsom salts and lavender essential oil baths

Because I am taking these orthodox medicines and do not want to inhibit them in any way I am cautious of taking herbs through out the treatment, but I have been drinking lime flower and rose tea for my intense palpitations which have been around since treatment week 12, the doctors advised Betablockers that was a step too far for me. And this morning I took 2 capsules of valerian…

I am noticing a big change in my personality, over these past 5 months I have stayed pretty much at home, a lot of the time in bed, my lack of energy, lethargy, apathy has been the hardest thing to deal with but now added to that the inability to stand is forcing me to literally ‘accept’.

Accept the mess in my home

Accept the inability to mother my child in the way I feel most comfortable with (cooking, cleaning, preparing, taxiing, etc)

Accept help from my wonderful partner, who has not gone to work, who is mothering me

Accept help from my brilliant teenage son and his girlfriend, letting them both care for me

Accept I cannot hold my profession together at this point

My roles as care-giver, as teacher, as gardener, as mother, herbalist, yoga teacher, wife, sex goddess, friend, community activist have all paled somewhat as I have slowly stripped away the virus that has live in my system since I was a teenager. Over 20 years this Dragon has inhabited my body, slowly damaging my liver tissue, lived in my soul, eating away at my longevity.

This pet Dragon, taught me to be temperate with myself, she taught me to watch my reactions and to question which reaction was ME and which was driven by HER. The liver in Traditional Chinese Medicine is called ‘The seat of Anger’ this large organ, is responsible for many processes in the body and I think of the liver as the chemical powder-house….and with that power house comes plenty of heat….add to that a virus that slowly destroys liver tissue and cells, more heat and inflammation….and Anger.

Anger, Judgement, Hardening of emotions, all things I have experienced arising from this virus. Talk to others with Hep C I have seen many parallels with these experiences. For years I have questioned my own compassion, my inability at times to ‘feel’ anything, how quick my judgement of situations and people can cut in….the yoga and meditation practice supports me immeasurably but I am aware of my innate nature and now this treatment and potential viral ablation, it could all change???

Everyone I am connected with that has gone through/going through this treatment has been given the hope of a longer healthier Life….we have all faced our individual mortalities in some way or another and this ‘miracle’ treatment has give many freedom of fear and hope……

Although I am on my back in pain, losing myself to some void, I feel positive, loved and mostly hopeful that in a few months time this will all be a distant memory…

Fighting Depression

This Dragon is strong, these drugs are strong, week 17 of 24 and I am struggling to keep my head above water.

My good intentions have fallen by the wayside, my healthy eating has dropped off, I can start the day well but by 4 o clock, craving carbs so badly, that it feels like I get a hole in my stomach that is only satisfied by bread, I seem to get a headache that only lifts when I eat carbs....argh.

I wake each morning feeling like I am in a 
hamster wheel, here we are again, like groundhog day! Unable to hold onto any though trains, memory is shot to pieces...


In my 'normal' life I share my passion for herbs in groups, giving talks and holding space for workshop, I see patients regularly and work creatively with plants, writing stories, poetry, making remedies etc. Since being on the medication I have felt unable to 'hold space' for others, I have kept patients to a bare minimum of 1/2 per month and basically not worked with people, just focused on the writing and creative pursuits, I feel like I have forgotten who I am.....I feel like a fraud, a shell of my former self…..

Summer holidays has demanded that I am present for my daughter which is wonderful, not working away on a summer tour of festivals, has freed me up to give her undivided attention, so I have booked to go away to the seaside for a long weekend....fingers crossed we shall have sunshine.

I am working so hard to stay positive, to keep moving, to get up in the morning and to keep a light energy both for myself and for my daughter, she is 9 years old and very sensitive, a beautiful soul. She doesn't have an understanding of what I am doing with the virus because I haven't fully disclosed to her, I don't believe that she could comprehend being so young. She knows I am working through something but that is all. 

For the first 3 months of treatment I lit a candle each night and used a mantra with my dose of drugs, then something shifted in me, a lethargy set in, a deep apathy, cynicism, negativity and something akin to teenage nihilism began to eat into me.

I CAN'T BE BOTHERED

I can only be bothered to watch series in bed til 1am exhausted, eating cereal (abet posh sugar free cereal) Where has my zest gone????? I want it back....my weigh is creeping up and I feel, lardy and cumbersome, muscle ache and joint pain..argh

Each day, I have a resolve to turn it around but its day one again, its been day one for the last week or 2!!!!! My hamster wheel.

Since week 13 I have had a feeling like palpitations almost constantly, it is horrid I went to see the GP and she told me that my heart is fine, so it is probably just a side effect....I feel worried that the drugs are too strong now and I just want it to be over, but I also fear that to not finish the 24 week course may cause relapse and it will have all been for nothing.....argh

So it is boring LOW mood and LOW energy world, swimming, fighting to keep afloat, grateful that I have to make an effort for my daughter and also grateful for the responsibility I have to Sensory Solutions, the company I have built with my Soul SistAs, the responsibly, both to them and to the people who have supported and invested in us, this is helping me to keep going forwards with lists of projects, unfinished books, remedies to make and courses and talks to write and design.... onwards and upwards...

Not taking herbs internally is so odd, I prescribe so many friends from my garden for myself in these times but I am not taking herbs alongside the drugs for concerns about interactions, but I have prescribed gardening and weeding for myself today so I shall get time to sit and BE with nature and it will life my spirits.....just need to drag myself outside......


love love love

crazy

I am feeling a little crazy, I am 3 month and one week into treatment and have 2 months and 3 weeks to go...for the past few days I have been experiencing odd sensations in my chest, akin to palpitations....but my GP says my pulse is stable. She has raised an echocardiogram...but says it will be 3/4 weeks. 

She asked if I am stressed. I do feel stressed. I feel like a fraud. I am a herbalist who normally sees patients, I have a treatment studio in my garden filled with herbs, herbs that I mainly grow, harvest and make into remedies for my patients, my community and my family and self...these past 3 month I have stopped working as my head is all over the place. I am not taking any herbs for fear of interactions. Morbid fear that I may inhibit the Anti viral drugs, that this killer virus may come back...even though I was 'undetectable' at 8 weeks...

I have made myself a pot of herbal tea, rose petals, that arrived one morning in the mail from a dear lovely friend, she was suggesting a foot bath. The roses smell so delicate and calming, also in my brew is Lime Blossoms, picked on my village green a few days ago...both these herbs are super calming and supportive to the nerves. Neither will inhibit the drugs, is what I am telling myself.

I have been having Epsom salt baths for muscle relaxation, as my back is pretty painful at the moment, but there is a discussion on the forum about magnesium possibly being linked to a few relapsing patients...so no more of them I guess.....

gut microbes

How does one treat themselves well whilst on treatment? 

I read various articles about the human body and mind, some make sense to me and fit in with my current paradigm of thinking so I adopt the ideology as 'truth'. Examples of this are; gut bacteria theories, power of belief theories, you are what you eat theories, anti-vaccine theories, meditation, rest, satisfaction in life etc etc...but I sometimes read opposite beliefs to my own with interest, wondering what it is that has led me down my particular belief system...

Take gut bacteria, now there is a wealth of research into fermented foods and supplementing with so called good bacterias. You can buy probiotics as supplements to support re populating the gut but really every time we eat fruit and vegetables from the garden we are gaining microbes that inform our guts about our natural environment.



interesting articles about health & gut microbes

http://www.hindawi.com/journals/grp/2010/453563/

http://www.hopkinsmedicine.org/health/healthy_aging/healthy_body/the-brain-gut-connection

https://www.psychologytoday.com/blog/evolutionary-psychiatry/201404/the-gut-brain-connection-mental-illness-and-disease

I love eating sauerkraut and luckily live with a man who loves to make it, so we have cabbages growing in the garden and various glass jars with differing stages of production around the house....the glass jar situation does my head in as I am not allowed to chuck out any at all and we have a surplus but its a small price to pay for health gut microbes....or is it? 
Or will eating enough sauerkraut sort all my stresses out?

Looking after diet is important eating fresh, vibrant foods is going to impact positively on general wellbeing and health, but when one is tired and lethagic, who wants to cook? I have found that even making a smoothie can be simply too taxing and a pitta stuffed with salad leaves is about the best I can ' be bothered' to to at some points....other days I can spend ages on the best salad in the world, organic juices and lush nutritional vibes...today I have had stone baked eaten pizza. home made lemon cake, sushi, bone broth veg soup and protein bars....because that is what happened today...I now feel super stuffed and even more lethargic so tomorrow I promise myself to make a smoothie and eat a big lush home grown salad.....

I found this info on a forum -


Hepatitis C viraemia is carbohydrate-dependent because the virus piggy-backs on triglyceride assembly and VLDL exocytosis. This makes a very low carbohydrate diet an effective way to control HCV viraemia, HCV-associated autoimmune syndromes, and steatosis. HCV cell entry is via LDL-receptor complex, therefore diets intended to lower LDL via upregulation of the LDL-receptor by restricting saturated fat and increasing polyunsaturated fat will increase hepatocellular infection. 

So makes sense to eat less pizza and cake I guess....or just more sauerkraut on the side?

pondering about it All

As I look into my altar bowl of medicines, I see 2 pills left, one orange one white, HnH, my friends for the past 3 months, these 2 pills were to be my last but tomorrow I shall empty another months worth into this altar bowl…..


It feels oddly ok, my fears are that more of this toxic chemistry will weaken my system in the longer term but weighing it all up, I want to improve my chances of ridding my body of the nasty acting, Hepatitis C virus.

I have been thinking deeply about health a lot, the wellness practitioner that I have seen for a couple of treatments recently has given me much food for though. He is one of the Hero's of Health-care, a shiny, saint of a man, the image he projects, all very admirable but completely unattainable to me. I respect all different kinds of approaches to health but I know that the 'purist, clean, detoxification' style is too 'perfect' almost Christian evangelistically, and not my way. 

Talking to those types actually make me feel quite awful. The idea that there is 'one' way, a way that involves cleansing, clearing, abstinence, straight edge, denial, self shining etc…simply isn't what I really want in my heart. I feel better with gentle kindness to myself, nourishing and devoting time to my own needs, time to write and explore my own depths. 

I believe that the current obsession with nutrition and what is and isn't wholesome, (how many differing ideas???? Acid/Alkaline, Paleo, low fat, detox, fasting,semi-fasting, etc)

The massive growing health food industry, where people can pay literally hundreds of pounds to go to nutritionists and get supplemented, with many many pills. The myriad of 'new super foods' from far flung places….

I believe that it partly stems, because of a divorce a rife we have from the soil, getting our hands deep in the Earth and planting seeds, watering seedlings and plants, weeding and deliberating what to do with the slimy guys, watching our food growing and the wonderful harvesting of it all….I know that shite chemical rich foods aren't very wholesome for me, it isn't rocket science, but if god forbid a morsel of crumpet passes my lips do I have to self-flagellate? NO but I do need the awareness that 4 crumpets in a sitting isn't very nourishing…It is the balance that is hard. This particular disease (Hep C) leaves sufferers lethargic, tired, foggy and craving energy rich foods so it is common for folks to binge eat, in my life as a human in the west, I have notice that people without Hep C also binge eat, they are also tired and eating for energy hits…..Could the modern lifestyle emulate having a killer virus?

My daily lists consist of a variety of ways I can be kind to myself and the world around me but still my cynicism can be heard. I wonder where this cynicism resides, where it has been birth and nurtured? As my body transits through another cycle of hormones moving towards the death phase, the blood will soon flow, the blood that I am so aware may infect my partner...I have felt a little like a vampire with the virus in my plasma, a little like a creature of the dark with my history of drug and human depth exploration, visiting blackness and desolation, poverty and abuse, coming from a happy stable home and comfort, I was interested in the opposite and I honestly don't regret any of the choices I have made....but this cynicism is tiring; I look around at the bright, shiny people, yoga, juicing, cocoa ceremonies, energetic medicine, power of positivity and occasionally I wanna puke at all the NICE. The homogeny of spiritualisation is either a smorgasbord of enlightenment, or pick n mix embracing the shadow.....and once a month for a few days I am disgusted and annoyed by every little thing....but I am not sure if clearing a virus will change that! I kind wish that I could give the cynicism up and follow a Guru a Jesus type persona, ( but maybe a woman in leather) and just do everything she said with a belief it was for the greater good....give up all my free will, but no that wish already has me reeling....ever thought today is a paradox....gonna go juice some garden farye n get the music on loud as I dance around my home tidying up......

day out to the hospital......

Week 11 of 24

I am premenstrual, feeling crap, lethargic, low mood, joint problems, anxiety, brain fog and irritability which could all correlate with the bloody awful summer we are having! Resolved in my head now to walk forward with the  full 24 weeks of HnH therapy, to clear the bastard virus for good.

I saw a chiropractor yesterday as the tightness around my liver all along my spine was getting to me. I had an initial assessment and he use a crazy diagnostic tool that was first used for astronauts. It looked a little like a large pen with a wet sponge pad, that was placed either side of each of my vertebra to take a reading....interesting.

He then cracked me about and explained a little about posture, my shoulders aren't level and my head is carried to far forward.....He also suggested I took Reishi mushroom.

I would love to take something to lessen the toxicity of the drugs but I am super cautious not to impede clearance or action of the compounds. I asked on a few hep c forums and all the responses were 'NO WAY' do nothing that may potentially impede the drugs. 

I saw my NHS consultant today at Barnet hospital, he made a choice not to support me on this journey with the generic medicine because it is against 'policy'.

So I begin a search for a NHS consultant that will support and guide me through this final 12 weeks....

I phoned the Hep C trust ( a liver charity) and spoke to a lovely person on the phone, he was French and having a really hard time since the Referendum, feeling unwelcome and insecure in the land he has called home for 30 years! I spoke to him for ages about the millions of people who are super happy that he lives here and to try and ignore the racist nutters, but he is feeling scared and shocked, its terrible what is going on in the world really disappointing and a shame. 

He told me that he knew of a potential consultant who would monitor me and gave me her number and name. After googling her i found her email and have just written to her with my fingers crossed....

where to go from here

So I got the result that the virus is undetectable in my blood 

which is amazing news...

I wrote to the Consultant to give him the results and ask his opinion about the lenght of treatment times, I have enough medicines for a further 3 weeks, 12 weeks in total, but there is a 5% chance that i may relaspe within 18 months. According to the figures my genotype 3 is the trickiest to treat and stay 'undetectable'. So if I took 1 more month of treatment it would give me a 3% better chance of staying undetectable, 2 months more medicine 6% better chance of staying undetectable and 3 more months 10% chance....

I feel a little exhausted from being on this medicine, my side effects are headaches, liver pain, joint stiffness, skin lesions and general malaise, nothing too dramatic really but annoying....I have sent off to buy 3 more months of generic treatment from India, through the buyers club...so hopefully it will be here in a couple of weeks....half way through this crazy journey.

I haven't been taking any herbs at all really....feeling deflated and knackered, it seemed like I was at the end of a marathon and now I am half way through....My energy levels are so low that i cannot really work at the moment which is a very strange place for me to be. I love my work and have never had so much time away from it, feels a bit like I am losing parts of myself.