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'
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.