Tuesday, 18 October 2011

Capacity and capability: or making hay while the sun shines...

I've been a bit quiet lately.  Not, thankfully, because I have been more unwell than usual, but because I have been rather better than at any point this year - and I've been making the most of it!

In this part of the world, we've been enjoying some glorious warm and sunny Autumn weather in recent weeks, which has helped a great deal.  More importantly, though, I think the Hydroxychloroquine (Plaquenil), which I started taking back at the end of June, has really kicked in and I am actually getting some energy back.  Just look at the change on my health chart over the last few months:

I am now reasonably functional (scoring 3 or more) most of the time.  I no longer need an afternoon nap to get through the day.  I no longer cease functioning at 8pm and have no option but to crawl off to bed.  I have evenings again.  And I actually have a degree of physical and mental energy that allows me to plan stuff and do things.

I started small.  I arranged to have my sewing machine serviced, and finally made up some dolls' bedding I intended to make for my daughter's last birthday, and then for last Christmas, but somehow never had the energy, the dexterity, and the time to finish. I've also almost finished a pinafore dress for her that I bought the materials for when she was a baby. The pattern only goes up to a 3 year old size, so I thought I'd better crack on with it!  I got out my knitting needles and knocked up a pair of fingerless gloves (loving those now it's a bit chillier!) - the first time in two years I've been able to contemplate doing something that involved sustained repetitive fine movements like that.  I'd forgotten how good this kind of creative activity is for the soul, and these small projects have given me a disproportionate sense of achievement.

I've also been getting back on top of my domestic situation.  Slowly and steadily, I've cleaned up and sold off some baby equipment that we no longer need.  I've also sorted out and sold the high heels I can no longer wear.  With the proceeds, I bought a secondhand dishwasher and microwave.  This again is something I have needed and intended to do for a long time.  They are making a huge difference to me, and anyone who didn't know the backstory would be bemused by how much pleasure and relief organising this small thing has brought me.

I'm still pacing myself.  I set aside a whole week in order to prepare for and celebrate my daughter's 3rd birthday and come out the other side intact.  But another measure of how things have improved is that I'm actually planning celebrations for my own birthday this coming weekend. Nothing too extravagant, just lunch out at a nice local restaurant with my family, followed by casual afternoon drinks with friends - but not that long ago, I couldn't even have faced thinking about planning anything, and my ideal celebration would have been an extra nap in the daytime, and an early night.

Most significantly, though, I'm going back into employment.  I was offered the job I recently wrote  about applying for, and I'll be starting work in November.  It's a part-time position, but it will involve commuting again, and will inevitably offer me less flexibility in how I manage my time than I have been used to - but I'm more confident than I have been at any point this year, that I will be able to manage.  I'm going to have to be careful not to get too excited and go off the blocks too fast, and also to remember to look after myself, but I'm over the moon at having the opportunity to do this.

The best thing about all of this is that it has begun to restore my confidence in me.  The fact that I have (finally) found a medication that can make such a dramatic difference for me, proves to me that it was my physical illness that was responsible for my inability to function  - not that I'd somehow suddenly lost my strength of mind or character, or my fundamental ability to organise myself and do what was necessary, whether on the work or the domestic front.  A good friend summed it up very nicely when she said, 'It's not about capability, it's about capacity'.  It wasn't that I was fundamentally useless or incapable of  doing any of these things, just that I was not in a position to get on and do them at a given point in time (albeit a point that lasted for many months).

I doubt I would have found it particularly easy to see or believe that back in the Spring, when I was very unwell.  But I would hope that when (and it's probably a 'when', rather than an 'if') my health next takes a downturn, I will at least have a bit more perspective and a bit more hope that things will not be like that forever.

Tuesday, 6 September 2011

Getting creative: if I were an Olympian

Arthritis Care (a fantastic support organisation! I may have mentioned that...) run an annual creative writing competition for those with arthritis.  This recognises the therapeutic potential of creative writing - and I tell you what, it works!

Now I think I can honestly say that I have not done any creative writing since I was at secondary school, and at first I dismissed the idea of entering because I didn't think it was my sort of thing.  But for some reason it kept popping back into my mind.  I had very recently begun to write this blog, and I suppose the bug had got me.

For a couple of weeks I turned the theme over in my mind - 'If I Were An Olympian'... I wanted to write something that acknowledged my condition and related directly to my experience of living with inflammatory arthritis, rather than a purely fictional and imagined piece, but I needed to find a natural connection with the olympic theme.  So I did some reading on the history and ideals of the Olympic movement, and as I read Deborah J Hunter's article Olympism for the 21st Century: New Life to a Timeless Philosophy, inspiration struck.  This was not just about sporting achievement and the body in its optimum state, it was about embracing life, about having faith in yourself, about our recognising our commonality as human beings.  But the idea that interested me most was that olympism is about the relationship between body and spirit.  Over the course of this year, I have invested a lot of thought and effort in re-establishing a postive relationship with my body, understanding it, respecting it and finding ways to work with it.  By that token, I *am* an olympian, and that is what I wrote about.

When I submitted my entry, I promised a few people that I would share it here once the judging process was finished, so here it is:

If I were an Olympian

Olympism is a doctrine of the fraternity between the body and the soul.” - Pierre de Coubertin

I sit on the floor in the hall, my eyes closed. I feel the weight of my legs sinking into the floor, and am deeply grateful for its unerring support along the whole of their length. I feel the burning in my toes and the bruising in my ankles, the strange weakness in my knees, and the sharper pain in my hips. My hands, resting in my lap, are almost one with my thighs, my swollen fingers throbbing. The heaviness of my shoulders and arms compresses my spine and my guts.

As I cycled, I had been focussed on that final climb. Saving energy by holding a steady pace on the flat, keeping my rhythm, keeping going, breathe and push, breathe and push. Rounding the corner and seeing the road rise gently in front of me, gearing down, gearing down, just keeping going. I could barely feel my legs. I have no idea how they kept moving. But I'd done it. I'd reached the top of the incline. This was officially a good day. And as the road levelled and the resistance dropped, I felt like the puppet cyclist whose flaccid legs move only because they are fixed to the pedals of his machine.

I inhale deeply, feeling my lungs swell and the release of tension as I breathe out. I search for the feeling of lightness, of poise. I take my mind and my body back to a time when I danced. My shoulders settle, my spine and neck extend. I raise my chin and open my eyes.

From my spot in the hall, at the junction of all the rooms in the flat, I can survey all the chaos. The thick layer of dust at the edges of the carpet, following the curve of the pile as it meets the skirting board. The scatter of shoes, bags and found objects in the hall - a leaf, some pebbles (there are always pebbles these days), a two pence piece, one of the red rubber bands that the postman drops. Looking down the hall to the living room, I see scraps of paper, coloured pencils, the sprinkling of cornflakes and peas under the dining table. And unifying the whole, a liberal top-dressing of lego bricks, cast off socks, soft toys, and story books. I long to restore a degree of order, but at this moment I cannot will my body to rise from this spot.

But then, I feel warm arms wrap around my neck, a soft cheek pressed against mine, and the breath on my face of a small voice saying, 'Mummy, can you be a horsey?'

Wednesday, 31 August 2011

A box ticking exercise?

I ticked a box today.  But it was not just a box, it was a categorisation that challenged my perception of myself and my condition (again!).  I was applying for a job, and came to the inevitable 'Do you have a disability as defined by the Disability Discrimination Act?' (ie ‘A physical or mental impairment which has a substantial and long term adverse effect on a person’s ability to carry out normal day to day activities. The disability could be physical, sensory or mental and must be expected to last at least 12 months’).*  This was the first time I have encountered this question since I established that my condition was not 'just' a post-partum thing, and since I had my really bad flare earlier this year.  It was therefore the first time I have had to consider whether I am 'disabled' according to the definition of the Act.

Now I understand the theory of why employers need to know this, and that it is beneficial to all parties to declare it, but I really wasn't sure whether I was 'disabled enough' to qualify.  I suspected that people I would normally turn to to chew over an issue like this might come back with a 'don't be so silly, of course you're not' response, so I decided to ask the people with first hand experience and posted a question to the #rheum and #spoonie communities on Twitter:

'A question for UK #spoonie #rheum folk - at what stage did/would you regard your #arthritis as a disability under the terms of the DDA?'

And as usual, Twitter came through for me.  In the space of that golden first hour, I had received some excellent and very sound advice from a number of experienced people, and it completely turned my mindset around.  I'd like to share some of the advice I received:

'You need to declare it, because it's in your interest. They [the employer] need to supply reasonable adjustments... '

'Talk to Access to Work at job centre, or @arthritis_care They should be able to give you advice on working with arthritis, and suggest adjustments that could help.'

'You won't get any medals for "struggling on" but will do a good job with the support you need'

'Look at it not as disabled rather differently abled. Just means you need to find ways around things...'

'the various aids (plus colleagues knowing I needed help) kept me at work for longer'

'Very worth while getting an AtoW [Access to Work] assessment, they will tell you things you never noticed before'
'Have you tried using our [Arthritis Care's] forum? There's a section on working with arthritis bit.ly/n5iLnB'
I also found some typically sound and clear advice from Arthritis Care on Applying for Jobs.

It became clear to me as I digested and responded to all this advice, that the part of me that was saying 'but I'm not *that* disabled' was motivated by an unholy combination of pride and reserve.  I reasoned that as I have already overcome my self-consciousness enough to use a stick when I need to, I should be able to make the further leap required here and overcome the urge to say 'I'm fine, I can manage' when I could be making life a lot easier for myself (and others).  I saw that there was no point in trying to second guess how my disease might progress over the next year, or what effect a new working arrangement might have on me over time.  The fact of the matter is that I have an ongoing, fluctuating condition.  My day-to-day functioning is compromised in a number of ways, and is likely to continue to be so to a greater or lesser extent.  That is what the Guidance Relating to the Definition of Disability (available to download from Direct Gov) describes, and that is all that matters in this scenario.  In fact, the guidance has some good examples relating specifically to Rheumatoid Arthritis, and ongoing pain and fatigue.

So in the space of about an hour, my attitude was transformed.  It became very clear to me that I should be ticking that box.  I am actually quite excited by the prospect of 'coming out' as disabled, and I look forward to seeing what Access to Work have to offer!

* I realise this text is out of date now the Equality Act 2010 is in force, and I'll mention it to them

Wednesday, 17 August 2011

Staying organised?

Here's a confession.  The other morning, I spent far more time and energy than I could afford turning my entire flat upside down, searching for some insurance documents ... only to find them nicely filed, exactly where they should have been!  I was convinced I had last seen them in a different box, and looked everywhere except the 'obvious' place.  Over the course of the last two years (for large parts of which I have been rather unwell), my 'filing system' has deteriorated into a series of chronological piles in various locations throughout the flat, and I have no confidence that anything will actually be where it should be.  I occasionally manage to weed and sort one of these piles, but the prospect of actually sorting it out terrifies me. 

Here's another confession.  It's not just my paperwork that's a mess.  I have the same problem with the kitchen, with my daughter's toys, with the laundry, with the layers of dust, and with all the other bits and pieces that never quite make it to where they should be or never get completely clean anymore.

This has prompted me to revisit and complete something I have been working on sporadically over the last few weeks - a questionnaire that Connie Reineccius (@ANewBeginOrg) had asked me to fill out as part of her research for the book she is writing on staying organised while dealing with chronic pain and fatigue.  Her questions raised some interesting issues and made me think, so I thought I would share my responses with you.

Q1.  How would you classify your pain/fatigue level?  (Constant – totally bed ridden, Constant - yet functioning and dealing with it,  Intermittent – I have my good days and bad days, Totally Pain/Fatigue Free – fully functioning)

I would say 'intermittent' at the moment.  The level of fatigue varies, and I usually have some pain (albeit at a fairly low level).  Just recently, I've actually had a couple of days when I have actually felt energetic (I know!).

Q2.  If you have constant pain/fatigue how are you coping with it?

Until recently, I didn't cope well with the episodes of continuous pain and ongoing fatigue.  It made me tense and frustrated, which only added to my problems. Now I am beginning to accept that this is my ongoing state, and have become significantly more relaxed about experiencing pain and loss of function in certain joints, and not being able to get on and do things as I used to be able to.

Q3.  If you have intermittent pain/fatigue what percentage of your week is spent with pain or fatigued?

Taking an average over the last few months, I would say at least half.

Q4.  How are you dealing with your pain/fatigue (i.e. medications, herbal supplements, microcurrent, exercise, etc)?

I take Naproxen (with Omeprazole because it made me very sick) and have recently started on Hydroxycholoroquine (Plaquenil).  I also take a fish oil (Omega 3) supplement, and am adjusting my diet to reduce the amount of wheat, red meat, high fat dairy etc I eat.  I find yoga, focussing and other mindful/somatic practices very helpful in managing my pain and my attitude to it.  I find that pacing myself is also critical. If I overdo it, I pay for it - but I have to listen carefully to my body, because the definition of 'overdoing it' is very variable.  I try to incorporate exercise into my daily routine when I am able - so I walk, cycle and garden.

Q5.  If you still have pain/fatigue, do you just curl up in bed and hide or what do you do?

Some days the fatigue is so overwhelming that I have no option but to sleep, or the pain is such that the only place I can be relatively comfortable is my bed.  But for the most part, I find that yoga/mindfulness exercises can help me understand and reach an accommodation with my pain and (lack of) energy.

At my lowest point, I just couldn't bring myself to face the world, and that alarmed me enough to prompt me to seek professional help.  It had always been my experience that laying low for a day or two would recharge me, but the days became weeks, and I realised I needed to find a better strategy for working with my limitations if I were going to have any kind of life.

Q6.  On a scale of 1 to 10, 10 being in excruciating pain/fatigue, where do you rate your pain/fatigue most of the time?

My pain is generally a fairly constant 3, the fatigue (and loss of functionality) has always been the greater issue for me and I would rate it at around 6.  I am generally only really functional for a few hours in the morning, and often have to take an afternoon nap and go to bed early to stand a chance.

 Q7.  On a scale of 1 to 10, 10 being excruciating pain/fatigue, how does your living environment make you feel?

I would say about a 3.  I have a high degree of control over my living environment at home, and generally find it calm, peaceful and conducive to wellbeing - despite the clutter and dust!  I don't think that the state of my living environment adds to my pain and fatigue in the way that, for example, living with another person who caused me stress might.  But the mess is a constant reproach to me!

Q8.  What tips do you have for others that you use to stay organized?  If you aren’t organized, what is your biggest frustration and what would you like help with to get organized?

I would definitely not claim to have mastered the art of organising myself while dealing with pain and fatigue.  I think I *still* haven't quite got out of the mindset that says 'this can't go on much longer, and I'll whizz round and fix everything as soon as I feel better'.  It doesn't help that my personality type is such that I prefer a degree of fluidity and spontaneity, and tend to rebel against over-organisation - ie, I like to have a sense of general direction of travel, but am happy to fill out the detail as I go; I do what is necessary to get by in terms of personal administration, but do not feel the need for elaborate systems; I prefer my home to feel lived in rather than aspiring to keep it show-home-perfect.

My greatest frustrations always stem from not having the energy to see a task through from start to finish, planning to do something and then finding I am too unwell, or just not having the capacity to do everything I would like.  But equally, my greatest release has come from accepting that I just cannot expect to get on and do things in the way that I used to, and I should not judge myself by my former standards.

At the moment, I am mostly able to remain organised in my head (when not too fatigued), but am limited physically.   I can generally keep on top of admin, but not housework, as I find that over using my joints causes them to become stiff or weak. I have to rest between short bursts of physical activity, but even doing this, the cumulative effects of doing too much in one day can be bad (I recently spent the morning tidying because visitors were coming, and then could hardly walk by the time they arrived).

The way I try to approach organising myself these days is to:
  • Be clear about my priorities - The combination of becoming a parent and becoming unwell has really helped me to focus these!  Basically, nothing is more important at this moment than being a good parent, therefore my greatest challenge in all this is ensuring that I conserve enough energy and mobility to be there for my daughter when she needs me.  I probably err on the side of caution, because the potential consequences of not doing so terrify me.
  • Be economical - I am very selective about the activities I chose to undertake.  I try to keep a list of important or urgent tasks that I can chip away at as and when I am able, or delegate to willing helpers when they are around - but definitely not an exhaustive list of everything that needs doing, as that would just be demoralising! 
  • Be realistic - I have learned the hard way not to overcommit myself, and to build slack time into my schedule.  I also avoid planning in minute detail, because having the flexibility to do things when I am able is key.  This avoids the disappointment of not being able to do everything I had planned.  Eg. I know I can only do one activity outside the house per day (like a trip to the shops or the playground), and this must last no more than half a day.

Q9.  Do you have a support system?  If so, do they help you stay organized and if so, do they keep you in the loop of what they are doing?

My experience is that friends and relatives will happily help in a 'crisis', but ongoing support is harder to come by.  My siblings and my parents are reasonably close by, but I am conscious that they have their own lives and commitments.  I received a great deal of help and support when my daughter was a baby, and when I first became really unwell, but this has tailed off.  I can occasionally call on them to help with something big, like when my allotment needs some serious digging, but I am conscious that I have to limit how often I do that.  Fortunately, my daughter is a great draw, so I probably see more of them than I might otherwise, and so get a bit of time off from childcare, and some help with the washing up or the tidying up.

My Mum is a major source of support.  She is very keen to organise me, but I find myself holding her at bay - partly because it is hugely disempowering to have her take over as if I were a kid, and partly because her approach would be to come into the house for a couple of days and blitz things, and I just can't keep up with that pace (even if I am just answering questions about what to do with this or that).  Having said that, she is great at keeping me focussed on getting the important things done, and helping me work out how I'm going to tackle things when I'm too tired to think straight.  Mum is also keen for me to move back to my home town, so she can support me in smaller ways, more often.  I have almost been persuaded of this on occasions, but there is a part of me that is clinging fiercely to my life here, and my independence.

I have a number of friends who live locally, who have offered to come round in a crisis, or look after my daughter for an afternoon, but (touch wood) I have not yet had the kind of crisis where I find I can't get out of bed or can't look after my daughter at all.  Fortunately, I find my friends are very good at keeping in touch with me and I rely on them to organise the kind of fun activities and diversions that I might not get round to sorting out for myself - that stuff really matters too!

Q10.  If you could change one thing to improve your living environment to make it more organized what would it be?  You don’t have to have the answer to how do it; I’ll try to provide it in the book.

I need better strategies for keeping on top of the chaos that a toddler can create, and tidying generally! One of the major barriers to employing a cleaner has been my inability to clear the decks to an extent that would allow them to do their work.  Part of the problem is that I have not been able to keep up with finding homes for all the new stuff that comes into the house as a child grows up, getting rid of the stuff we don't need, and enforcing tidying up.  It concerns me greatly that my home is not often in a state in which I feel comfortable inviting other people into it, and I feel bad that I am not providing a better environment for my daughter.  The truth is, this is contributing to my isolation and hers, and will continue to do so unless I change something.

Q11.  How do you want to be identified in the book – please list either your full name, your first name and last name initial, initials only, or anonymous.

I would be happy with Independent Woman, @inde_woman, or IW - whatever works best for you.

Thursday, 14 July 2011

Reality checkpoint: or who's crazy?

I did A Big Thing last week.   I put in a bid for some consultancy work.  This is not, on the face of it, that big a deal - but this is the first time in about four months that I have been in a frame of mind and state of body where I have felt confident to actively seek paid work.  For me it represents a significant stabilisation, a return to some sort of normality (albeit a redefined normality).

There is a lamp post in the middle of Parker's Piece in Cambridge, which has the phrase 'Reality Checkpoint' written on it, supposedly because it is the only landmark in this large open space, or because it marks the transition between the University and the Real World.  The concept of a Reality Checkpoint often comes into my mind when I think back to the period in the Spring when I was very unwell, and when I lost many of my reference points.

The thing that rattled me most about that period of illness was not the physical limitations I was experiencing, but the lack of mental energy.  I could develop strategies for coping with physical restrictions and fatigue, but the inability to think straight took me by surprise and seriously knocked my confidence.  One of my coping strategies was to pick one Important Thing to do each (not too bad) day.  I found it a huge struggle to get my head round doing fairly straightforward things, like making a simple phonecall to HMRC.  All I had to do was find the relevant paperwork, marshall the information, and have coherent conversation.  I would have done it in five minutes in my lunch hour before, but this time it took days until I even felt ready to attempt it.  It was experiences like that which really made me doubt myself, and I was terrified of letting anybody see me that way, especially in a professional context.

It is one of the great ironies of chronic illness that the point at which you really need to advocate for yourself, the point at which you need all your wits and all your courage, is precisely the point at which you are feeling the most low, the most vulnerable and the most unsure.  At the same time as I was first negotiating my way to a rheumatology referral, I discovered that a friend of mine was also very unwell and concerned that she might have an autoimmune disorder.  She too was visiting the GP repeatedly and having trouble securing a referral to a specialist.  So what did I do?  I offered to accompany her to her next appointment.  With her agreement, I made the point that her work and home life were both being seriously affected, suggested that the next step was to see a specialist, asked about support services such as counselling that might help her in the meantime.  The irony is that although I was perfectly capable of doing this for someone else, I did not have enough clarity on my own situation to do it for myself. Even when I knew what I was experiencing at a particular point in time, but my memory of it faded fast. I couldn't piece it all together and work out what it meant as a whole, I couldn't articulate it fully, and I certainly didn't trust anyone else to comprehend it and respond appropriately.

Even though I didn't know which way was up, I had at least known that something was wrong for a while, whereas the people I rely on for intelligent support and critical input were several steps behind me.  I have come to realise that they were on their own journey to understanding and accepting what was going on with me, but at the time I was myself uncertain, their doubt fuelled mine.  It was definitely not helpful to hear insinuations that I was being self-indulgent, or that it was all (or to some degree) 'in my head':
"You have to pull yourself together, you have a child to think of"

"It can't be RA because...it's not the same as what [insert name/relation] is experiencing etc"

"We don't do RA"
 "I think you just need something to take your mind off it"
"Why don't you just... [insert simple fix]"
I genuinely began to wonder whether what I was experiencing was real or imagined.  On my better days, I couldn't quite comprehend how bad the bad days had been.  This is one respect in which I regret the absence of regular adult company - someone to observe closely how I am, and someone to talk through what is going on and how to deal with it.

One tool that is helping me (and those close to me) to get a more objective picture of how I am, is my day-by-day chart of how I am feeling.  I was resistent to the idea of doing this at first, because I didn't want to become obsessed with my symptoms, and I worried that tracking my illness would make me (seem like) a hypochondriac.  But two things spurred me on - a desire to monitor how my current round of treatments were actually affecting me, and a desire to share a simple representation of the state of my health with the people who I need to understand what I am experiencing.

The chart I came up with is really straightforward (otherwise I wouldn't bother filling it in!). I rate how I feel each day on a five point scale, and make notes at the side if I need to.  The 1s are the days when I just have to sleep, the 3s are the days where I can function up to a point, the 5s are what healthy people might consider normal. It is easy to see how I've been over the weeks and months, and now you can see for yourselves!

So this is one thing that is helping me and those around me to understand my new limits and the new rules by which I need to play.  This is my reality checkpoint.

As for the consultancy contract, I didn't win it on this occasion, but that doesn't matter.  I was at least able to bid for it.  And yesterday, I was invited to be a partner on another bid - so here goes!

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: http://pewrsr.ch/mpPHDN' (via @SusannahFox https://twitter.com/#!/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!