Tuesday, 4 March 2014

Winter Slump And Flare

Hello Friends And Curious Anonymous Readers,

I think I've finally cracked it with the template and layout of this blog.  I had to make even more changes and scrap the old template all together due to some HTML code issues. I didn't want to have to go there since it's mostly Greek to me but I had to and it was quite a learning curve.  Everything seems to be working now.  How do you like the newest look of my home in Blogland?

It's been a struggling kind of week. My Fibromyalgia condition has been very active lately. This is full on, full house of symptoms flare-up.

The rheumatoid part of it has been the worst of it though and very painful. . The very damp but unusually warmish weather that we're having  is not helping one bit. Some days I feel like I weigh twice my weight, swollen all over and just about every part of me aches and it's difficult dragging myself around. If I can manage to get down the stairs to go outside I'm walking very slowly as I feel so extremely  heavy.  The reality is that I  weigh about  125 lbs. (60+ kgs/9 stone) so not really heavy at all. I  haven't been able to go out every day , had to cancel a spate of social engagements and had days when getting dressed was the most productive thing I did for the day.  During these times I use up the meals I made and saved in the freezer and also some M&S prepared meals also stored in the freezer. I even have a stash of cookies and cake, too.   sunglasses I'm able to at least eat well without too much effort.  I'm happy for the quick defrost feature in my microwave and for my Kindle Fire and Netflix which make not being able to do much else much more tolerable.  I've been lucky enough to be able to crochet as well although there has been a day here and there when even that's too painful.cry  The trick is to mix what size hooks and weight yarns I use (why I usually have two or more projects on the go at any one time) and also some more complicated stitches can be sore on the fingers and wrists.

Here's a couple of things I made because I love working with rainbow colours and wanted to see some colour when I looked at the windows on these endlessly dreary days.

 It was fun to experiment with some new stitches and also perfecting the technique of using metal rings as the frame. (I used a combination of Phildar Cotton 3 and Schachenmayr Catania and a 3mm hook just to be thorough in my reporting. grin)

 My other constant source of trouble is a seriously screwed up (literally and figuratively) right knee.What's left really isn't much of a knee now.   It was my first serious knee dislocation and I was 15.  The doctor said I should have surgery.  It was called a Hauser procedure and it was the worst thing to ever happen to me.  The metal in there has caused me much weather related pain and the knee was screwed into a position that was too rigid for me and my having Joint Hypermobility Syndrome (which has been referred to by some doctors as EDS type 3)  was many years away from being diagnosed  then.  My leg is now seriously bowed and deformed (which I'm very self-conscious about) and I should use a crutch all the time that I always have  with me (it folds up ) but resist using. Sometimes the rest of me is too heavy and achy to use as it causes more pain in my already painful shoulder, wrist and fingers. Three different specialists in three different countries have found it to be a challenge to attempt to correct and two of them asked for my permission to have colleagues see my xrays and knee in person as it was a such  rare instance of  patella surgery gone very wrong. In the end they all admitted that they don't think surgery is a viable option for me. Even if replacement had a good chance of being successful I would reject it anyway since the so-called plastic joints are held together with metal.  I've had enough metal in me and parts of my knee already removed which have caused a lifetime of pain so why would I go for more of that but to an extreme level?  The latest specialist here in Holland said that he agreed with my decision to decline surgery and said that he wasn't even sure that he could work around the existing screw to remove the knee which is screwed to my front shin bone (whose name escapes me at the moment). He also told OH that it's remarkable that I'm able to walk on it at all.

It can all be rather depressing since there's not much that can be done about any of it.  There's no magic medication to cure it- I rely on a few different medications to get my through it. I qualify for a lot of the help and support (I would get more if I were in a wheelchair) offered by the social services to handicapped/disabled/chronically ill people and that makes coping a little bit easier and I'm grateful for that. Are any other FM, JHS or EDS3 sufferers reading this?  How are you dealing with it?

My own personal philosophy/mantra  is that "when life gives you lemons you make lemonade" and Terry's lemonade stand is open for business ! 

Over the next few days I'll be posting about the lemonade making I've done during this bad spell.  In making these blog posts I document for myself how I'm trying to cope with this bad spell by being as positive and as productive as I can be and taking a more objective view on things. It's something I can read back when I'm being hard on myself when I'm really not able to do much but sit in my favourite chair and watch the birds and their antics at the feeder. Organising the posts makes me to pause and reflect.  Putting it all together is good mental exercise (for the FM brain fog)  because it involves writing and editing the posts, taking the photos (on my crappy camera), editing the photos and all the other things involved in trying to make an interesting  blog. It's greatly therapeutic even if no one reads it, although readers and visitors would be a very welcome development.

Well, I've run out of steam and need to take a break so I'll leave you here for now.  Take care,thanks for visiting and see you later!