Mibrofyalgia

I haven’t written here for a while,  I’ve been feeling a lot better recently since getting acupuncture at the pain clinic, it seems to have brought me out of a very long flare.  Unfortunately I was only given 5 sessions of acupuncture (they informed me of this at the last session!) and the pain is slowly increasing again.  I’m enjoying feeling better though and have been quite busy.

At the end of March Mr McBlonde and I got an allotment after being on a waiting list for 2 1/2 years.  Mr McBlonde has been doing all the heavy work, digging mainly to clear the plot of a years worth of weeds.  I have been doing gentle planting and hoeing the places Mr McBlonde has dug.  We also inherited several giant Hogweeds so, much as I dislike weedkillers, got out the roundup and sprayed them because giant Hogweed sap can cause permanent scarring and photosensitivty. We’ve now only got a month to clear the allotment entirely before the next inspection, so wish us luck!

Over the last few months I have done a bit of painting but I’m giving it a rest just now.  I needed a break from it to let my inspiration come back (hopefully).  I’ve been thinking about it again over the last few days and I’m wondering whether to go in a different direction for a while, more expressionistic to see if I can loosen up a bit.  I get very bogged down mentally with whether it’s good enough or how awful I think it is, I’m basically too judgemental and very perfectionistic which stops me doing anything at all, not very useful.

Mood wise I’ve been feeling a litlle better, I’m relatively stable just now, slightly below par but mostly not too bad.

I’m still in a fibromyalgia flare at the moment and some days can’t function at all.  Some days I feel improved and am desperate to get out and about only to feel very unwell again the next day.  Fluctuation is the theme here.  I’m hoping this flare will pass soon.

I found a link to NHS Blog Doctor-Dr Crippen who has written on his blog and in the Guardian that he thinks Fibromyalgia  does not exist

“Oh! Dear. I just happened to mention in the Guardian today that I do not know what “fibromyalgia” is. They did not teach me about it at medical school. It is not a diagnosis I have ever made and, not knowing what the condition is, I shall not be making it in the future. Truth is, I rather doubt it exists at all.”  Dr Crippen

http://nhsblogdoc.blogspot.com/2010/03/fibromyalgia-whatever-that-is.html

I am incandescent with rage, how can a Doctor just make arbitary decisions like that, about something he admits himself he was not taught about (many years ago may I add) and hint that many Doctors have the same attitude as he does, and then get his ill-informed opinion published in a national newspaper.  I think the reason I’m so angry is that I’m in so much pain and my life is so limited and then some idiotic Dr says it doesn’t exist.  If I had any choice in the matter I would be living a normal happy life, going for long walks, working and enjoying my hobbies.  I can’t do this because I’m not able to and for some Dr to say it doesn’t exist then what is it then genius?  Is it your years of scientific research that have led you to this conclusion?  No you looked up the font of all rumour and speculation, wikipedia.  I’m trying really hard not to swear, I think I’ve done well so far……

Yesterday I went to the pain clinic.  I was referred to get acupunture which is good because it has helped in the past.  I was also advised that Lyrica might help but I’m not particularly keen to go on any more drugs, I’m already on three and they don’t really know how they all interact let alone four.  Plus I’ve had terrible weight gain from the ones I’m on and don’t want to add to it.  The doctor didn’t really give me much of an idea as to what else they’re going to try if anything, and it was a bit confusing.  It’s also becoming clear that not very much is known about Fibromyalgia and Chronic Fatigue Syndrome.  So I suppose I shouldn’t expect too much in the way of help.

I’ve been feeling more positive the last few days, I’ve been in less pain and able to get out and about a bit more.  I’m mostly over the cold now which lasted two weeks and made me feel pretty rotten.  I’ve been doing some painting and have visited some friends which was nice.

The rolercoaster of mood swings has finished but left me in a low.  Having the cold hasn’t helped because I can’t really go out and do things, which usually helps me feel better.  It’s very cold outside and I don’t want this cold to get any worse.  The depression has kicked in good and proper.  I don’t enjoy things, that is when I can motivate myself to do anything, I can’t think of stuff to fill my time, when I do think of something I try it and either get frustrated or hate doing it-things I would have previously enjoyed.  I can’t concentrate and keep waking up too early in the morning.  I feel persistently sad or empty.  I need to try and nip this in the bud, so I’m going to harrang my doctor to see if I can see a psychologist, I’ve been on the waiting list for about a year and have heard nothing.  To be honest I’m not very impressed with the NHS, I’ve got schizo-affective disorder, a serious mental illness and I have to wait this long for help.  If I had the money I would pay to see someone privately but I’m on benefits so there’s no chance of that.

I’ve had the cold for a good few days now, it’s making the fibromyalgia much worse.  I’m aching more than usual and my temperature is all over the shop.  When I used to get the cold before I had fibro, it was an incovenience but now it floors me.

I’m working on trying to stop pushing myself too much when I’m feeling good, because if I do I then crash and my Fibromyalgia symptoms flare up and then my mood dips too.  I’m learning (slowly) that pacing is definitely the way forward.  The problem I have is that when I start to feel better I want to get on with all the stuff I haven’t been able to do and I get over-exited, do too much and end up sore and exhausted.  I need to realise that when I’m feeling good/better I need to save some of that energy and then I can more consistently do the things I would like to do.

I’ve been doing some craft recently, needle felting, wire sculpture, sewing and mixed media sculpture.   It’s really good fun.  Unfortunately my fibromyalgia does not agree.  My neck keeps seizing and my hands are in pain.  Aaaargghhh.   So I’ve taken the approach of little and often.  It’s working out ok, a bit frustrating but ok.

I’ve been wondering for a long time why do I do art and what purpose does it serve?  I’m not sure, would be my first response, so I’ve been looking into it and came across an interesting point which I’d never really thought about.  Pictures cross the language barrier, this had never occurred to me!

I enjoy the process of seeing, observing and interpreting into a painting.  I also hope that people enjoy looking at what I do.  When it comes to art I don’t have a lot of words come to mind, I start to think in images so I find it hard to put into words my thoughts on art.