Having neglected this for so long, I find I have a rash of new readers. For their benefit more than anything else I thought I'd do a quick synopsis of the last few months.
The year started like any other, cold weather means weeks of being indoors, my body seized up by the rain and cold. Devon was very wet this year as was the whole country I suppose but our village was cut off by floods several times, no way as bad as those poor people on the Somerset Levels however. At least we escaped the biting easterly winds of other winters.
I worked as much as I could over the worst of it and then I saw a Lyme 'Specialist' at Winchester Hospital having been referred to the new National Lyme Clinic as it then was. Little did I know that the clinic would close again at the end of March due to problems over its' funding. The conssultant was pleasant but didn't seem to know much about Lyme disease. I was given 3 months low dose antibiotics and told to read Stephen Buhner's book on healing lyme with herbs. All my NHS blood tests came back negative so 'no active infection' then.
The herx I had whilst on the antibiotics was severe, obviously even at a low dose some bugs were being killed. this then abated and after several weeks I reached a plateau on which I remained. The consultant did not want to see me again, I was apparently cured. My mobility is still awful, I have worse neck problems than I have ever had and the creaking and clicking drives me to distraction. We did the first show of the year in Cornwall in fairly decent weather although it was very wet one day, it wasn't too cold so I coped OK with it.
I then started working towards all my summer gigs, internet sales wnet through the roof for me so I was sewing as much as I could. At a show in Oxfordshire I had the luxury of a late start, a shower and breakfast whilst Worst Half opened up the 'shop'. In the shower I took a tiny tick nymph off my right foot. I didn't think too much about it, it was very small. One week later we had a camping weekend with the family in Central England, a weekend of family meals, sitting in the sun and visiting a kids play park. It was glorious.
Next morning my mood changed, I scratched the back of my knee only to find I had removed a large tick. I was frantic (sorry!) I couldn't see the wound so got Worst Half home from work to inspect it and the rest of me for any more I had missed. All I had was a hole in the back off the knee, no more nasties. I phoned our surgery, saw a GP later in the day and she prounced the hole quite big and that she though the tick had been very well embedded. I was referred to the 'wound nurse' for 3 weeks for ongoing treatment. Luckily this has now all healed Ok although I was told there was a slight rash round the hole but not enough to be called and EM rash. Several days later I fely very fluey so was back on the doxy again. This time I obtained some more and took a longer course and supplemented with biofilm busters and lots of antioxidents and probiotics. I felt dreadful the whole time.
After 4 weeks I couldn't cope with keeping out of the sun any longer, I work at mostly outside events this time of year and it's been a nightmare avoiding sunlight, so now I've stopped the doxy and am just on a herbal regime. I have the bulk of my summer shows in the next 4 weeks and needed to be reasonably with it. One day last week I was so dozey I drove over a wooden post in a car park much to Worst Half's annoyance, he'd only just fixed it since my last mishap with a lampost after cranial therapy!
So that's where we are now, a bit less brain foggy, a little less sunburnt and rushing headlong into a 2 months of full on outside events. My garden is neglected although I've been collecting Salvias to grow in pots which dont need digging, weeding, tidying and pruning. Just the odd water, a repot ain the spring and thye look fab on my south-facing patio. Best of all they survive from one year to the next here. That said, it applies to me too, I'm no better, not a lot worse and survive. I should be thankful for for small mercies I supoose.
I'm a glass-half-full girl living in a glass-half-empty world. Having partially recovered from Lyme Disease which went undiagnosed for over 15 years, I'm now plunged into coping with the aftermath, chronic arthritis, lots of other wildly fluctuating and unexplained symptoms and then osteoporosis struck to complete the picture. Nevertheless, I manage to run my business with help and work away from home 6 months of the year.
Wednesday, July 23, 2014
Tuesday, July 22, 2014
A poem for Lyme
prompted by a website looking for Lyme themed poems I wrote this in five minutes flat this morning. Wish my brain worked better at other times and at more useful things!
Get up and work through it
you're not really ill.
If you say you can't work
well just take this pill.
It might make you happy
but it wont cure your woes.
Ok have this painkiller
for the pain in your toes.
Now you've got brain fog?
but not quite all day?
Your face droops? your neck hurts?
OK, have it your way!
Your tests are all negative.
Of course they are right.
What on earth do you mean
no-one understands your plight?
So twenty years later
at the end of your tether
You go surf the net
and find all together
a whole group of people who suffer like you
so you talk and you talk and they tell you what to do.
Ignore all the medics who keep ignoring you.
Then you have to self treat and you're on your last dime,
to pay for a genius who tells you it's LYME.
So you sigh with relief and cry tears, not of joy
but of years of frustration at our government's ploy
One day truth will out
and revenge will be sweet
but all I do now is constantly treat.
I've lost my career and my friends have all flown
but my knowledge of Lyme has most certainly grown.
Get up and work through it
you're not really ill.
If you say you can't work
well just take this pill.
It might make you happy
but it wont cure your woes.
Ok have this painkiller
for the pain in your toes.
Now you've got brain fog?
but not quite all day?
Your face droops? your neck hurts?
OK, have it your way!
Your tests are all negative.
Of course they are right.
What on earth do you mean
no-one understands your plight?
So twenty years later
at the end of your tether
You go surf the net
and find all together
a whole group of people who suffer like you
so you talk and you talk and they tell you what to do.
Ignore all the medics who keep ignoring you.
Then you have to self treat and you're on your last dime,
to pay for a genius who tells you it's LYME.
So you sigh with relief and cry tears, not of joy
but of years of frustration at our government's ploy
One day truth will out
and revenge will be sweet
but all I do now is constantly treat.
I've lost my career and my friends have all flown
but my knowledge of Lyme has most certainly grown.
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