Hello dear Spark Friends,
It has been a very long time since my last blog, and at the request for an update from a few Spark friends, I am 'biting the bullet' to post this report.
I say that because this is a painful exercise in itself, and it has been a painful year, all in all. It is literally painful to type more often than not, and this year has been one of dealing with pain on an ongoing basis.
Since my last blog, I finally got to see a rheumatologist in March, who confirmed that the pain is a combination of Allodynia and Fibromyalgia. A number of medication options were suggested, and over the course of many months I tried one after the other, as my body did not tolerate each in turn. I have always had a list of antibiotics I am allergic to, so now I have a whole lot more to add to the list.
As the year progressed, the pain worsened. I experienced pain I could never have dreamt possible - to the point that I thought this is what it must be like to be tortured. The Allodynia can be severe at times - my doctor says even a snowdrop can be enough to trigger pain. We don't have snowdrops here in this part of Australia, but I already had a sense of what she meant.
Last year I was having trouble having a car seat belt touching me, but nothing prepared me for the pain that clothing (especially underwear) and bedding, and water can cause. Consequently at home I have spent the year in very loose night attire - in Summer time, nightdresses that I can hold away from my skin when the pain escalates, and in the Winter, baggy pyjamas and robe. Getting dressed to go out of the house can be a difficult and painful process, and then I can't wait to get home and out of my clothing again.
The cooler months were tricky because there were many times I could not tolerate having bedding on me - so I would get up and come into the room where we have our heating system and try to distract myself until I couldn't keep my eyes open any more, and then I would finally be able to go to bed and actually sleep.
All year I have struggled with showering, even though we have a soft flow shower head, as the water drops often feel like daggers. Along with that was the pain of footwear, and even when Mum hugged me sometimes. Just a hair falling on my skin would start a pain episode. I've had many days when I could not sit, stand, walk or lie down comfortably and distractions weren't enough to take my mind off the pain. On the worst days I was literally taking it all one second at a time, with my mantra being 'another second just went by' which I would repeat over and over to get me through. It has felt like a long haul a lot of the time.
Then in July I developed a stomach virus and it took 3 months to recover from that. My doctor suspects that all the medications I tried that my body rejected one way or another most likely set up the conditions for an inflammatory cycle, accounting for the time it took to work its way out of my system. This was exacerbated by seeing a naturopath who prescribed a number of things that made all my symptoms much worse, and it took another month to overcome the effects of that. My energy levels have been depleted and I have been battling chronic fatigue, and bouts of depression. My body has rejected anti-depressant medications as well.
With all this I have been very much housebound a lot of the year. Medical appointments were my main outings, though there were times I was unable to go out so I had to re-schedule. When I managed to get to an appointment I found that pain episodes would invariably escalate for days afterwards. The social isolation that goes with it all was in many ways as hard to deal with as the pain. I often had to miss a social occasion that had been planned - mostly due to adverse reactions to medications, or the stomach virus, though sometimes it was due to overwhelming pain. The de-cluttering of our house has come to a standstill on account of all this, too. The stress of needing to move has made everything even more challenging, while the condition of our house continues to deteriorate. In more ways than one I have felt that I am only just surviving...
In my last blog I mentioned the passing in late February of our dear friend Briar - who we miss a great deal. During the course of the year, Uncle Stefan (the husband of Mum's cousin in Victoria) was continuing his battle with lung cancer, caused from having worked with carcinogenic products as a carpenter many years ago, before this was known to be the case. Last year he had responded well to chemotherapy without any side effects, and then this year his body rejected these drugs and his condition deteriorated, until he passed away in late June. From the time of my cousin Theo's death in May last year, that made 3 deaths in 13 months, and it took a good couple of months to begin to feel an easing of the grief I was experiencing.
I always find this time of year challenging (the lead up to Christmas, as well as the lead up to New Year) as my father died just before Christmas the year I had just turned 14, and his funeral was on Christmas Eve. With even more loved ones gone, it does not get any easier. A number of my friends have wished me a pain free year in 2013. While that is not realistic, I hope for the pain to ease as much as possible, and at the very least to be able to manage it. But most of all I hope 2013 does not bring sad news.
My doctor was on extended leave during the year and on her return in August tried to find a psychologist experienced in working with people who are dealing with pain issues. Earlier in December I had my first appointment with a psychologist who is very compassionate and is working with me on some techniques to help deal with how I think about pain. The one thing that has helped is her pointing out that realistic and therefore reduced expectations of myself will help me cope better. One of the reasons I thought at times to write a blog - but did not (apart from the pain of typing) - was that I felt so ashamed at not making any progress, particularly when I read blogs where people wrote about how much they achieved despite pain and other limitations.
This month I have also seen another rheumatologist who has a broader focus than the first specialist I saw, as my doctor was concerned there may be more than Fibromyalgia going on. As a result I will have some blood tests done in January to see if anything more is revealed. This rheumatologist also feels it would be best to try for positive outcomes with the psychologist since I have pretty much exhausted the range of available pain relief medications. In the meantime I am trying to manage the pain with a combination of paracetamol, ibuprofen and Endone.
On a positive note, I met 2 Spark friends in person this year, one from Tasmania and the other a fellow South Australian. We have maintained contact and I value that so very much. Shortly after my birthday in late November I had a surprise contact from someone who is a member of one of the same teams I belong to, who I had not encountered previously - and out of the blue I had a new Spark Friend! That was a most unexpected blessing.
The other thing is that while I often have not had the energy to do much on Spark Pages or track my food, I have managed to keep my weight within a 2-3kg range close to the level I was before the pain issues began. So while the scales haven't shown a lower reading than the best I had so far achieved, I also have not weighed more than when I joined SP. I have also managed to reduce my intake of sugar overall compared to what it was before I joined SP, and that has no doubt helped to make a difference.
So, dear Spark friends, that pretty much wraps up my news and 'update'. My energy levels fluctuating the way they do means that I sometimes have a fair break between activity on Spark Pages, so please forgive me if I don't responded to comments or your own blogs. My priority for when I do have the energy and can manage pain enough, will be to return to de-cluttering the house and getting it ready to put on the market, so that our living conditions can be less of a concern...therefore my activity on SP is likely to still be reduced.
I wish you all a safe, successful and healthy year in 2013, and I hope you all have a good year that you can look back on fondly.
Love, hugs and blessings,