Saturday, 20 October 2012

I'm back...with a new diagnosis, or two...

Well.  Where to start?  I have so much to tell you.

I finished work at the end of September (it was a maternity cover contract), and I went out on a real high.  I had managed to sustain working four days a week for the best part of a year.  I had proved to myself that I could still be competent in a work environment.  I had developed strategies for working around pain and fatigue.  I knew that the trade off was having no evenings (my bed time was generally around 8.30pm) and things not getting done around the house, but I thought I was achieving a good (enough) balance between work, health and family.  On reflection, I had not been paying attention to certain health issues that I really should have been.  I was just so focused on keeping going.

During the last couple of months of my employment, I was under quite a lot of pressure trying to complete particular projects.  I also had some family issues to deal with.  And I was writing tenders for freelance work as the opportunities had presented themselves.  My body responded by coming out in angry red sores, starting on my right arm, and spreading across my torso and down my legs.  My first thought, given my condition, was that this might be psoriasis.  But the first GP I saw thought it was more like an eczema.  I treated it with a steroid cream for four weeks, which calmed it slightly, but the spots were still coming out in new places and broadening out.  I saw my regular GP on Thursday, and he instantly identified it as psoriasis.  So it looks like my diagnosis may finally be refining itself, and this may be psoriatic arthritis.

I was due to see my Rheumatologist next week, but that appointment has been rescheduled for New Year's Eve.  I discussed this with my GP, but he advised that the refined diagnosis would probably not affect my treatment, so there was no real advantage to bringing the appointment forward.

He then looked at his screen and said he needed to discuss my latest set of blood tests with me.  We had ordered various tests because of a cluster of issues that had been concerning me, but that I had put off fully acknowledging, let alone dealing with, until I finished work - bloating in my abdomen, my monthly cycle becoming shorter, nausea and vomiting in the run up to my period, and a borderline smear result.  The tests showed that my CA125 level was 'slightly' raised.  This is the test that indicates what the GP who ordered it delicately described as 'ovarian health'.  It is a potential indicator of ovarian cancer.

Now I've done a bit of reading about the CA 125 test, and it has its issues.  There are various other benign factors that can produce raised levels, such as hormonal variations, and various other conditions that can affect it, such as endometriosis.  I am currently waiting for an appointment for an ultrasound scan to investigate further. 

Friday, 24 February 2012

Success and perspective: this too shall pass

I once worked with a someone who was very fond of asking the question 'what does success look like?'  On the face of it, this is one of those management-speak phrases that instinctively raises hackles, but actually it had its uses.  It helped to lift people's focus above the practicalities of what they were doing, and get them to clarify what they were aiming to achieve and how they would know when they'd got there.

I've recently re-discovered this short film on Defining Success with Rheumatoid Arthritis from Creaky Joints, and it is interesting how my reaction to it has changed over the few months since I last viewed it.

It's not uncommon to hear people with chronic conditions saying 'I just want my old life back'.  It's a tough thing to make your peace with the fact that this will probably never happen, but it has given me a great sense of peace to have reached a point where I understand and accept that.  I know I wasted an awful lot of energy yearning for something unattainable and resenting my situation before I got there.

I was really struck by Tallia's expression of her goal: 'I think I just want my life to start again' - not to go back to how things were, but just to be able to do *something*.  This was very much how I felt throughout the Spring and Summer of last year.  Everything in my life seemed to have stalled, and it was as much as I could do to function at the most basic level.  Laurie, the Health Psychologist interviewed, makes the classic observation that '[the illness is] not you. It's something you live with, but it's not the entire definition of your life and yourself' - but it certainly felt like it was when I was incapable of doing much at all, and had pretty much lost any sense of who I was and what I was capable of.

My reaction to the conclusion of the film has changed hugely over the course of a few months.   When I first saw it, I was in a state where I would have settled for any kind of symptom reduction, and I could hardly comprehend the possibility of anything more than that.  Rediscovering possibilities, openness to experience and seeing potential in my life seemed totally unrealistic. The initial trauma was all encompassing, and I could not comprehend the nature of it while I was in the middle of it, let alone see an end to it.  So the idea that it is only possible to imagine what your new life could be once you get beyond this trauma rings very true with me.   

But that point did come.  Partly because I found a regime of medication that gradually reduced my fatigue and pain and allowed me to focus and function again, and partly because I spent a lot of time working things through and developing practices that help me to cope with my illness.  And I have emerged with far greater clarity about my priorities in life than I have ever had - balancing a commitment to look after myself (on which everything depends), a commitment to being the best parent that I can to my daughter, and the need to make enough of a living to get by.

I started a new job at the beginning of November, working 3 days a week.  At the same time, I was offered a freelance job that I had thought was not going to materialise.  Since New Year, I have been working 4 days a week for my employer to help cover a vacant post.  So that's 4 months working at least 4 days a week.  This time last year, I would have regarded that as nothing short of a miracle!

I'm managing ok, but I have not yet hit my ideal balance - the trade off for doing 4 days work is that I have very little time for anything else.  By which I mean that when I am not working, I am sleeping. I don't do evenings. Weekends are all about recovery too.  Today I had to tell my sister that I didn't think I could cope with a weekend away until I reduce my working hours again. 

I am functioning reasonably well at work.  In spite of my nervousness, it all came back to me very quickly.  This gives rise to another conflict, because I am constantly having to temper my enthusiasm and remind myself to take things steady.  It all comes back to the concepts of capacity and capability - I do not have the capacity to do all the things I know myself to be capable of, but at least I have rediscovered my confidence and I can do some of them. 

I have not regained my pre-arthritis life.  Few people do.  But I am functioning at a level that I could only dream of a few months ago, and I'm delighted with that for now.