dreaming of the forest

Path near Lynton, England

Path near Lynton, England

I had such a great week – really great! I made plans in my head about joining a gym, about going back to work and the goals I would set myself. I laughed, I played with my son, I thought so many great things were changing. Saw my doctor on Thursday and I think I even convinced him we were on the homeward path…

But the last two days have been hell on earth, and emotionally I have crashed so hard. I sit here in the hours before my family wake with tears streaming down my face – I have spent hours – literally hours on the computer looking at pinterest and cabinporn.com – picture after picture of beautiful forests – those deep dark woods where amazing things happen… but places I will probably never go to again because of ticks.

I try to think of all that is good, but I struggle. I used to think I had the best friends in the whole world, but I don’t know – where are they? Oh dear me, I just want a month in a lonely forest, to sit as still as still can be. We don’t have bears in Australia, but I would be as still as a bear in winter.

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Drugs are hard to take

I am finding it a struggle to get the timing right for taking my medicines. It is ridiculous, and compounds the fog in my brain trying to work it all out.

Each Byron White formula needs to be taken 30-60 minutes apart, and 2 hours from other medicines. Luckily I only have to fit in three different formulas, I bet some of you have to take more.

Byron White Formulas

Byron White Formulas

Herbal supplements need to be taken two hours after antibiotics and at least an hour from the Byron White Formulas.

Antibiotics and painkillers need to be taken with food.

And somehow you have to fit it all in twice a day.

Byron White Formula Detox 1

Byron White Formula Detox 1


The entire day is punctuated with medication – no wonder people with lyme feel that there is nothing except their illness. Even if you are having a good day, there it is, every hour or two, reminding you.

Oh yeah, let’s have some of this green powder to make the day end on a gluggy note.

Green powder drink - in milk - believe it or not is is quite ok like this

Green powder drink – in milk – believe it or not is is quite ok like this

Posted in Lyme Disease, medicines, Uncategorized | Leave a comment

and let the Christmas festivities begin

I just adore Christmas – I love Santa Claus, I love (LOVE) buying presents for people I love, I love drinking the best champagne I can afford.
I also really loved eating ham.

This year I won’t be able to eat ham, or pork, or beef or lamb. Thanks to the tick who gave me Lyme, I also developed the alpha-gal allergy – in my case, an anaphylaxis allergy to the meat of mammals. One slice of corned beef no bigger than two fingers is enough to warrant an ambulance.

But what is the use moping about what cannot be? New traditions will be found, we will develop some great ways to celebrate this fun holiday.

My son turns four on the 11th of January so we do not get into Christmas too much until after his birthday. It is a busy month.

I should explain that I have a habit of going somewhat overboard on the buying presents front. To try to curb my tendency towards extravagance my husband and I concocted a cunning plan. Each year we will pick a country/region, and as much as possible we will celebrate Christmas according to the traditions said country. The idea is that Santa Claus will visit my son, giving my son gifts from that country.

For this Christmas we have chosen Scandinavia (particularly Norway, but widening the scope a little for the purpose of buying presents my son will love). I am so excited.

Seeing as Christmas here in Australia is a summer affair, we won’t be cooking the common Norwegian Christmas fare (and because if I did I would probably die). We will cook some salmon, make a Norwegian summer cake, and eat fresh berries.

Norwegian summer cake (in a messy kitchen)

Norwegian summer cake (in a messy kitchen)

Today, being the 1st December we lit a candle, as they do in Norway, I have made my son an Advent calendar, which I will fill with chocolates and little treats.

we will light bees' wax candles every night until Christmas

we will light bees’ wax candles every night until Christmas

I hope that whatever is happening you all find a way to enjoy the Christmas season, taking the time to care for yourselves, but also enjoy the love and support of those dear to you.

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I don’t care about the keys, where are my words?

Yesterday I had my first true loss of a word… increasingly I have been forgetting things, where are my keys? (– twice), and my sentences have certainly not been creative. But when my husband asked me where the car keys were I wanted to respond “they are in the front flap of my handbag”, but I struggled over the word ‘front’. I halted, and slowly from some old inner part of me I stuttered two very slow ‘f’ sounds, then it was like a rote learning part of me eventually pulled out the word for me. The problem is that the conscious me was looking on this scene with horror… it was not forgetting a word, for a minute that word did not exist.

a very handy goat-leather handbag.  It has room for an epipen as well as fitting a kindle, wallet, keys and phone.

a very handy goat-leather handbag. It has room for an epipen as well as fitting a kindle, wallet, keys and phone.

Posted in Lyme Disease, symptoms | Leave a comment

Just walk in the sunshine

walking at Austinmer

So a few days ago I was pretty miserable, but today the sun was shining, my son was in daycare… and I have found that the Naproxen (http://en.wikipedia.org/wiki/Naproxen) tablets really do mask the joint pain for a few hours.

So who was I to waste a precious moment? I grabbed a bottle of water, a sunhat, my trusty 50 plus swim jacket, my saltwater sandals and hit the beach.

I walked for almost an hour – it has been many months since I could last do anything like that. My knees are wobbly this evening, but I do not care – it felt amazing, I felt like I was free.

Of course it should be stated that salt water is a great way to detox – to balance the body. Who knew medicine could work so many wonders to the spirit and the body?

I did not think or plan, I did not try to control my day – I just walked. I had to concentrate to ensure I did not lose my footing, and that was enough to stop me over-thinking.

I hope you all get a day out like that.

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Since I got Lyme I have been a rotten friend

Lyme makes me feel as though my contact with the outside world is vanishing. I cannot bring myself to count how many weddings, birthday parties, dinners, drinks and picnics I have missed. You too?

I’ve given up my job, temporarily, but still…I love my job. I love my colleagues and now there is a big gap in what used to be my concept of self. I used to be employed. Now I am sick.

OK I know I’m hitting the sorry cart heavily today. Some days are worse than others.
My own problem is that I just don’t know how to be sad. It isn’t really a part of my disposition. My brother and I were very firmly raised in that tradition that says “act like everything is ok, and you might just believe it”, but also I think it was because my mother believed that no-one wants to be around someone miserable.

My best friend is supposed to be coming down to stay the night, I have been looking forward to seeing her so much – we have been best friends for 22 years. But I am going to have to cancel. I just can’t talk or listen – noise and light just render me irritable and sensitive. I love her, but it is too hard. I don’t know how to let her help.
So I ask, What is the point of being friends with me?

To be perfectly honest sometimes it seems easier to let friendships slip – my life is not one I particularly want to share.
I used to see performances all the time, I used to bush walk through the rain-forest behind my house several times a week, my life was busy, and I prided myself on being a great friend. But now – I can’t talk about the exciting opening night. I can’t talk about the great new project I took on at work, or the hobby I have picked up. I can’t even tell you about my exciting plans for the days ahead – I will be in bed! If the flare ups are neurological I can’t even read.

No-one wants to hear about someone sick. And most of the time that is all I feel – I feel like a list of miserable symptoms. A list of symptoms that just keep going on. Hell – I am bored with myself, who would want to be in my company?

I feel like a lousy wife, and a lazy mother.

I know my friends would reassure me, but I don’t want to be reassured. I want to be better. And I am so cranky, and when my friends try to reassure me I feel even crankier – because the truth of it all is, that this disease has made it impossible for me to be the wife and mother and friend I am supposed to be.

I will be strong for you when you cannot be strong for yourself

I will be strong for you when you cannot be strong for yourself

But there has to be a silver lining, and I know I have found it for me.
My husband is the kindest, sweetest man I have ever known. He reminds me to slow down, he feeds me, and watches over me when I sleep. He cries when I am too sick, because he loves me. His face never changes – it looks upon me with all the love in the world, and that keeps me going. His face reminds me that life is amazing. I don’t know why he still loves me, sometimes even I forget who I used to be. But to the bottom of my toes, and tips of my fingers, I am so glad he does.

I started this post feeling sorry for myself, but I do not feel that way now. Well not quite so much.
I am sure you feel awful, and I am sure you probably feel some of the things I do. But more than anything I hope you have a friend or a relative, someone who makes you feel good about yourself.

Take a deep breath, a glass of water and know you are one day closer.

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The need to detox.

the ocean makes me feel cleansed

the ocean makes me feel cleansed

The way I understand it (though let’s face it with all this brain fog taking over, understanding anything it a bit hit and miss) is that the need for us to detox is as important as our medication protocol – indeed the two form coherent aspects of any lyme treatment protocol.

Toxins are released from dead spirochets, and our bodies are flooded with these toxins – so whilst it is great that the bacteria is being killed, if we don’t find a way to rid our bodies of these toxins, we will feel pretty sick (sometimes very very sick).

There seem to be almost a million ways to detox, so each week I thought I would try something new and tell you how I found it.

What do you do? I like ways that combine some form of relaxation – makes it more likely I will stick with it.

Infrared Sauna
The largest organ in the human body is our skin, so using it to sweat out our toxins is the most efficient method I have heard about. I read somewhere that 20 minutes of sweating is equivalent to the work kidneys are capable of in 24 hours (I don’t know how reliable that is – I never double checked). I also heard that Borrelia and Babesia cannot thrive in excessive heat. Bring on the sauna!

I gather that this means if you go too hard, too fast, flare ups can happen, so I guess the best thing is to use a sauna as you do most other medicines – to take it slowly.

I bought an infrared sauna – it was a great expense (I have since been told that there are cheaper, portable versions out there). I am not sure about you but my capacity to feel temperature is failing me. I am almost always cold, and when I run a bath for my child I need to ask someone to check the temperature for me, because what feels ok or even cool to me, is far far too hot for my child.

My joints ache like I am ninety, so I love my sauna – I sit in there, read a book, and on a rare day I might even manage a stretch or two.

Infrared saunas have a different method for heating up the body than the steamy saunas I have used before. It does this through infrared radiation. The infrared radiation is able to heat up deeper levels of tissue than what would other wise be possible for a non-infrared sauna or steam room. As I understand it there is a higher concentration of toxins in sweat from an infrared sauna.

I keep a dry brush in the sauna, and while I am in there I dry brush my body.

I dry brush starting with the soles of my feet and work my way up. I have read that you should brush in upward strokes towards the heart, I have also read circles are good. Does anyone know if it really matters which direction you use?

In an infrared sauna, the air surrounding the person is cool. This is totally different to non-infrared saunas, where the air can become incredibly hot. My metal water bottle is never hot, even though I am sweating away for up to an hour. Actually I read novels in the sauna, I just completed a 400 page history book, and not a single page shows the slightest sign of damp.

After the sauna I take a shower – I don’t use soap, trying to give my body more of a chance to detoxify itself. I read that a cold shower is best, but for now I am trying a warm shower.

Next week I am hoping to try adding home brewed herbal teas to my detox agenda. Do you have any hints for me?

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