Thursday, 1 August 2013

Negative Spoons

Part 1 in which we set the scene.

[NB: I was originally going to write a singal post about how things like LARP events can have a lasting effect on my health but I found it difficult to do so without first explaining why I was ill in the first place. Actually, I found this post to be particualrly cathartic and decided to keep it in its entirity. The real point of all this will come in a second post tomorrow.]

I have a long term illness which is quite hard to define. I began getting sick in November 2011, it was post LARP event so i assumed it was a bit of good old lurgy. I felt week, tired and achey; i was getting bouts of vertigo and my glands felt swollen. Must be flu I thought and took a few days off work to try and recover. Only I didn't recover, it lingered pushed through my body in waves, reeling from feeling 'under the weather' to 'downright dreadful'.
I suffered through November and December like this and it was, to be perfectly honest, miserable. The pain and fatigue were growing worse by the day and the vertigo had me terrified. In early January 2012 I finally visited a doctor, whatever this was it wasn't going away and I needed help.

The doctor diagnosed post viral fatigue following some sort of flu and said it would pass. I struggled on for a few weeks having to take more time off work due to pain, fatigue and vertigo not particularly lending themselves to a lab environment. Eventually the doctor agreed that post viral fatigue might not be correct since things appeared to be getting worse not better, and we also couldn't identify the triggering virus. So the tests began. tube after tube of blood was given and sent away only to come back negative. Working in a veterinary lab, we also made the decision to test for some more peculiar illnesses including brucellosis, leptospirosis, HIV and Lyme Disease. and nothing came back positive. By the end of March we were tentatively calling it Fibromyalgia and considering management options. The outlook was grim and I was finding it harder than ever to keep up with full time work. I hurt all the time, I was so exhausted i was dropping hobbies left right and centre, and i still barely had the energy to do a full day's work. I was taking time off sick, using my hard won flexi-hours and sneaking in annual leave where I could.

Then came a revelationary phone call from the doctor. A final blood test had come back from testing in a specialist laboratory and this time it was positive. I had the antigens associates the bacteria Lyme borreliosis. I had Lyme disease. furthermore my symptoms were consistent with somebody suffering with a long term case of Lyme disease; by this point I had added joint swelling, sporadic numbness, cognitive issues and digestive problems to the list. Lyme Disease being unusual in this country, left my doctor a little baffled and we tried the standardised treatment - a mid length course of oral antibiotics.
There was no improvement.

I was now in a situation when I was being sent home from work on a regular basis because I was so exhausted and in pain when i got there that I could barely sit upright, let alone work with biohazards and chemicals. My afternoons were frequently spent in tears stretched out on my sofa clutching a packet of co-codamol and willing it to work. I took the decision at that point to enter into a period of long term sick leave. This coincided with my doctor making a referral to an Infectious Diseases Specialist to see if we could move further on. This is where i will abridge the story some what. Due to some 'administative error' my referral was delayed and I did not see a doctor again until 31st of December 2012. I had been sick for over a year and the last six months had been spent without any form of treatment or care. Needless to say my health did not improve, in fact it took a turn for the worse.

In 2013, under the care of a specialist, I began further testing which eventually concluded that i had an 'atypical long term case of Lyme borreliosis' and we only had one real option which may or may not work. I was set up with a midline in my arm and arrangements were made for a community nurse to visit me every day at home to administer a massive dose of IV antibiotics. I was lucky, the side-effects were minimal for me. Sadly though, so were the therapeutic effects. I experienced a few days of feeling slightly better and then quickly relapsed into the same state of endless pain, exhaustion and a myriad of other difficulties. We concluded that the antibiotics had probably (but not certainly) killed off any bacteria left in my body. What we are now faced with is the after effects. The very real damage that has been done by an invasive and sophisticated bacteria that had been living unwelcome in my body for over a year.
Some of this pain may be 'post infection fatigue'; a very large portion of it is likely to be permanent physiological damage from the bacteria to my endocrine system, mitochondria and nervous system; there is also the possibility that my illness triggered Fibromyalgia, a complex illness which, you guessed it, is related to the function of the endocrine system, nervous system and mitochondria. 

The prognosis then: not good. We can wait and see if some of these issues resolve themselves. We can toy around with different medications to manage and control the pain and nervous issues. We can look at physiotherapy and see if my stamina can be increased. But these things take a very long time and are down to trial and error. In the mean time I am in not fit state to work a full time job, as my Occupational Health Therapist states I am unable to work 'consistantly, repeatedly and safely'. I am not in a fit state to do many of my previously loved hobbies with any sort of regularity, or without finding them extremely difficult. I have had to reevaluate the way I live my life entirely and do so under constant judgement of friends, family, employers, government agencies and complete strangers.

1 comment:

- byrd said...

Ugh. i hear you. This story is all-too-familiar for those of us with 'invisable Chronic illnesses'.

I'm looking forward to part 2.