Wednesday, 29 June 2011

Somewhere on the Rheumatoid Spectrum: on the road to acceptance

Last week, I started telling you the story of the onset and diagnosis of my inflammatory arthritis.  This is the continuation of that story:

By the time I saw my rheumatologist for the first time, I had already made a significant decision.  My return to work after maternity leave had been disappointing in a number of ways, and I had decided within weeks of my return that I needed to move on.  Happily, the organisation for which I worked was already making cuts, and I put myself forward for voluntary redundancy.  My aim was to slow down, spend more time with my daughter and look after my health.  I planned to work independently, giving me more control over the workload I chose to take on, and allowing me to work mainly from home.

As my illness developed, it gave me hope to know that I would soon be able to relax and take stock.  I spent much of the final three months of full-time employment feeling as though I was very drunk and pretending not to be - making the most of the pools of lucidity when I had energy and could do a few tactical things to keep the ball rolling - but I made it through.  I seriously considered selling up and moving back to my home town to be closer to my family and the support they could provide, but I was not ready to leave the home and the life I had made for my daughter and myself.

I was still working on the premise that what I was experiencing was a post partum thing that would resolve itself in time, so throughout the Summer, I rested.  I did some gentle work on my CV, on raising my profile, on re-establishing connections and networking, and I lined up some consultancy work and a short-term part-time cover post for the Autumn.

But by August 2010, the familiar rumblings in my feet and hands were picking up again. When I saw my Rheumatologist, I asked for a steroid shot to help reduce the level of disease activity and take me through the busy Autumn I had planned.  By November, it was clear that whatever this was, it wasn't going away, but it wasn't getting significantly worse either.   My Rheumatologist now described it as inflammatory arthritis, suggested I use Naproxen to control the ongoing inflammation, and discharged me to my GP for ongoing care.

Looking back, I should not have been surprised that I was not just getting better.  Having read up on Rheumatoid Arthritis and related disorders, I came to suspect this had been developing for a number of years.  As far back as 2003, I had an unexplained 'infection' in my left elbow that caused heat and swelling.  At around the same time, I started having episodes of flu-like illness without the runny nose and congestion.  I remember my boyfriend of the time coming round to see me because I was feeling really ill.  When he asked what was actually wrong with me, I just burst into tears.  I didn't know, and I couldn't explain.  I frequently had episodes like this, where I was unnaturally tired and achy, and just had to sleep if off for a day or two.  It caused problems at work, and I went to the GP about it several times over the next few years.  We did blood tests.  They showed nothing.  So it was a great relief to think that I had finally discovered an underlying cause.  The ongoing aches and pains were not ideal, but they were manageable, and I felt confident that I would be able to live with them fairly happily.

I started 2011 with great plans to capitalise on the momentum I had built up in the Autumn and get things moving on the work front, but this was not to be.  I'd had a bout of flu in December and was extremely tired by the time January arrived, so I planned to take a bit of a break.  I reasoned that this was precisely what my new, flexible lifestyle was all about.  But then the fun and games really started.  I began throwing up on a daily basis, so I stopped taking my Naproxen and went to see my GP.  The vomiting continued, and my joint pain worsened, so I was prescribed Omeprazole alongside the Naproxen.  This helped settle my stomach a bit, but not entirely.  I began to have episodes of shivering and exhaustion on a daily basis.  I felt freezing cold in spite of being wrapped up in a duvet, and had no option but to sleep it off for a couple of hours.  I was so tired that I was keeping the same hours as my toddler.  All in all, it was a bit like early pregnancy, but without the obvious up side!

By March, I was barely functional.  I put all my energy reserves into the days I spent with my daughter and just collapsed on the days she was at nursery.  I started to find that my knees did not have the strength to cycle up the slight incline in the road near my house.  Then one afternoon, my knees and hips completely refused to cycle on the flat, and I had to walk home, clinging to the bike for support.  For a period of several weeks my large joints carried on giving out, and I was scared to venture too far from the house or go too off the bus routes that would allow me to get home.

I think it is fair to say that this was the lowest point I have reached with my inflammatory arthritis.  I didn't know whether I was coming or going, whether to ascribe what I was experiencing entirely to my disease, or whether I was going crazy.  I really felt my isolation, and was deeply frustrated by feeling old beyond my years and beating myself up for not being able to live life as I had hoped and planned.  Thankfully, somehow I had the presence of mind to seek out a wonderful somatic therapist. Her input has definitely fast-tracked the process of coming to terms with my new reality, and helped me to live with the foibles of my body in a more positive way.

I had a tough time conveying the level of exhaustion I was experiencing to my Rheumatologist, and the effect it was having on my life.  My x-rays showed no deterioration in my joints, and he described of my condition as 'not disabling'. While I knew what this meant literally, and I am grateful not to have an agressive form of the disease, I felt it did not acknowledge the minimal level at which I was functioning and the uncertainties with which I was living. In the last couple of consultations, I have established that my exhaustion can be attributed entirely to the disease, and that although it may not be possible or helpful to categorise my disease more exactly at this point, it is 'on the Rheumatoid Spectrum'.  I can live with that degree of uncertainty.  What matters is the nature of the symptoms I am experiencing and how they respond to the treatment options available.  I have recently graduated from NSAIDs to the DMARD Hydroxychloroquine.  We chose that on the basis that it has be shown to be effective in reducing fatigue in related disorders.  It is still early days, but I am hopeful.

So I still don't know quite what this thing is that I'm living with, but I know how it is, for now at least.  And here I am, living in the moment, taking each day as it comes.

Friday, 24 June 2011

That's just how I am: the wisdom of the sloth

One of the joys of having a child is rediscovering classics of children's literature, and also finding new favourites.  I am especially fond one particular story, which we stumbled across recently in a charity shop.  It is "Slowly, Slowly, Slowly", Said the Sloth by Eric Carle (of Hungry Caterpillar fame).  The sloth does everything slowly, slowly, slowly - eating, sleeping, waking, crawling along his branch and back again, and just hanging.  The other animals ask him why he is so slow, so quiet, so boring - and finally, so lazy.  He formulates his answer slowly too, but when it comes, it is wonderful:

"It is true that I am slow, quiet and boring.  I am lackadaisical, I dawdle and I dillydally.  I am also unflappable, languid, stoic, impassive, sluggish, lethargic, placid, calm, mellow, laid-back and, well, slothful!  I am relaxed and tranquil, and I like to live in peace.  But I am not lazy...That's just how I amI like to do things slowly, slowly, slowly." [my emphasis]

I think the reason that this delights me so much, is because it encapsulates the struggle I have had redefining and asserting the principles by which I choose to live, and fighting off both implied and overt criticism, from others and from myself.  While I have been writing this post, an ex-colleague and friend has got in touch and invitated me to meet for lunch.  This is OK from the point of view of pacing myself - it would be local, and would not overfill my schedule.  This is someone I get on well with, and want to see.  But I would be lying if I said I wasn't still slightly apprehensive about answering the innevitable question, 'so what have you been doing?'

In the Spring of this year, when I was in the early stages of my latest rough patch, I added greatly to my own predicament by getting deeply frustrated about what I could not do.  I could not launch myself into the professional activity that I had wanted to, I could not be as active with my daughter as I wanted to be, I could not keep up with the housework, I could not make plans and move my life forward.  I berated myself for this - my body for putting me in this position, and my mind for not dragging me through in spite of myself.  And all this did was waste what energy I did have and compound my physical symptoms.

I have come to accept my current reality - that the fatigue associated with my inflammatory arthritis is what it is.  I can try to avoid exacerbating it, I can treat it with medication that I hope will have an effect, I can listen to my body and look after myself, but there is no knowing if or when the situation will change, for better or for worse. I cannot judge myself by the frenetic standards of the rest of the world, and I cannot force myself to comply with them.  Nor do I want to.

So what would I say now to the accusation of laziness?

'I respect the needs of my body, and I rest when I need to. I prioritise the things that really matter to me, and I schedule my activity carefully.  I do what I can, and I don't do what I can't.'

I too am relaxed and tranquil, and like to live in peace. It has taken a while, but I am now almost as content as the sloth to say 'That's just how I am.'

Tuesday, 21 June 2011

Getting a grip: my inflammatory arthritis onset and diagnosis story - part 1

I would like to tell you the story of my inflammatory arthritis and how it was diagnosed.  At this point, I have to give a big nod to Kelly Young (@rawarrior), because this post is inspired to a great extent by the RA Onset Stories on her RA Warrior blog. These were a great source of information and comfort for me, particularly in the early stages of my journey towards diagnosis and treatment.  They helped to convince me that I wasn't imagining things, that I certainly wasn't crazy, and that I had to pursue the matter and get proper treatment.  I would offer Kelly my story too, if it were not for the degree of uncertainty that still exists about how my condition should be categorised.

Arthritis Care (@arthritis_care) recently published a report called Get a Grip, advocating the need for a national strategy for Musculo-skeletal diseases.  I was struck by one of the headlines they pulled out - 'people with rheumatoid arthritis are seen by their GP an average of four times before they are referred to a specialist for diagnosis'.  This leapt out at me, not just because this was exactly my experience, but because it alarmed me that this is obviously such a common experience.

In the spring of 2009, when my daughter was about five months old, and just as I was returning to work, I began to experience a peculiar stiffness in my feet.  This was particularly noticable when I got up during the night, and first thing in the morning.  Initially, I attibuted this to the stresses and strains of wearing formal shoes again and the extra weight I was still carrying after the pregnancy, and I assumed it would pass.  By the late Summer, however, I was also beginning to experience stiffness in my fingers, which occasionally made it difficult to write or type.  I thought perhaps this was because I had become unused to typing during my maternity leave, or because pushing a pushchair was straining my fingers and wrists.

One afternoon in late August, however, I was working at home and finding that my fingers were becoming increasingly unresponsive and reluctant on the keyboard, and it gradually dawned on me that there might be a relationship between this and what was happening with my feet.  I did a little light googling on the subject of stiff feet and fingers, and it became apparent very quickly that there was a possibility that this might be Rheumatoid Arthritis, so I decided to pay a visit to my GP.

At that very first appointment, the GP's response to my history was 'we have to consider the possibility that this might be Rheumatoid Arthritis', and he ordered some blood tests and prescribed me some Ibuprofen.  These came back negative. I was also referred to a podiatrist, who I didn't see until early December, but who did make me some rather good insoles to take some of the stress off my feet. My next appointment was with a different GP, who because I was still experiencing the same symptoms, ordered some x-rays.  The x-rays showed no damage to the joints.  The details of the third appointment are hazy in my mind now, but I believe we agreed to monitor the symptoms for a few more weeks and see how things progressed.

By November, I was rather unwell.  The stiffness in my feet was such that I had to crawl rather than walk when I got out of bed in the morning.  My baby daughter thought that was a hoot, but I was less convinced.  If I tried to walk, I couldn't balance as my feet were completely unresponsive.  A couple of times I fell with the baby in my arms as I was bringing her into my bed in the night.  My knees and elbows were also affected, and I was wearing sports bandages on them for support and warmth.  I couldn't take any weight on my fingers and wrists, and I was taking the bus three stops to the nursery rather than walk.  And I was tired.  So tired that I had no choice but to take sick days and just sleep.  At the point that this was happening on a weekly basis,  I went back to the GP's surgery.

I saw a different GP again, and I burst into tears on the poor woman when I was trying to explain what was going on.  She asked me what I wanted to happen, so I told her 'I need a rest.  And I need to see a Rheumatologist'.  She signed me off work for two weeks and referred me to a Rheumatologist.

I finally saw the Rheumatologist at the beginning of January 2010.  His assessment was that I was clearly suffering from some form of polyarthralgia, but that it may be a post-partum thing that would resolve itself.  He gave me a steroid shot to see how my symptoms would respond, and it did dampen them down for a little while and allow me to enjoy a fantastic snow day with my daughter.

In many ways, this is only the beginning of the story, but I think I will have to save the rest for another post.

Friday, 17 June 2011

We need to talk: on finding my voice and the importance of talking about everything

A lot has happened with me in the last three years; things that have fundamentally changed my life, my outlook and my priorities.  I have become a (single) parent.  I have taken voluntary redundancy from a long-term job and am now working independently.  And I have been diagnosed with inflammatory arthritis (a chronic and often debilitating autoimmune disease). 

And for three years I have been a lurker.  I have looked online for people with similar experiences, and have taken great comfort and reassurance from what I have found, and I am not alone - apparently  '1 in 4 internet users who experienced a recent medical crisis went online to find someone like them:' (via @SusannahFox!/SusannahFox/status/72742618563493888).  If anything, I am surprised the figure is not higher.

Up until now, I have not been ready to talk much about my own experience. but increasingly I feel it is important to add my voice to the body of experience that is amassing online - particularly in relation to health matters, where there is some vital advocacy work being done.  I am also finding that the conversations I am now having with people going through similar things are invaluable in terms of helping me to feel connected and come to terms with my illness.  At the very least, I hope that what I have to say will provide that element of human connection and comparison for people going through a similar experience.  And it would be even better if we could have a chat about it!