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'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!


  1. That chart is an excellent idea! I should do one of those!

  2. Thank you for writing about how I feel. I have psoriatic arthritis, spondyloarthropathy, and fibromyalgia. When the good times happen I so quickly forget what it feels like to be so worn out just opening my eyes.

    I'm going to try the chart. Thank you again.

  3. I'm glad you both like the idea! It's very heartening for me to know that I'm not the only person feeling this way too, and I hope the charts are helpful to you and to anyone else who gives it a try :)

  4. Thank you for sharing that. Reading how you feel , and your close friends/family's viewpoint of you is something I can relate to. I just never realised how soon people get fed up with you for having to depend on them.
    I am a reflexologist and nutritional therapist so looking and being healthy was of paramount importance. Everything seems out of my control now. I have gone from being very useful to useless. All the best with your next bid for consultancy work. Oh and your chart is brilliant

  5. Thanks to you too @silkysam1! It's incredible how hard it can be, even for people very close to you, to comprehend the effects these illnesses have. I know I had no idea until I became I'll. This is one of the things that is motivating me to talk about my experiences. I can see that it must be particularly difficult for you in your line of work, but believe me you are not useless! It is not easy to come to terms with something that has such a profound impact on everything you are and everything you do, but it can have a positive impact in terms of rethinking what really matters to you and what defines you. I can feel another post coming on, but you may also enjoy the one about the wisdom of the sloth. Anyway, very best wishes to you too!

  6. Thank You @independent Woman. Very positive, and inspirational to me. I am now logging my good/bad days to remind me of my good days.

    Thanks again :)

  7. In a strange way it is reassuring to read this as i so recognise everything you describe about coming to terms and managing a debilitating condition. My lack of confidence has been the biggest shock and as I run my own business I've felt depressed and anxious about how and if I can continue to do so. The lack of information and knowledge of where to turn for help and my inability to begin to sort this only exacerbates the situation.
    Your chart is great, in the absence of an appointment with a rheumatologist, I've been treated via an elimination diet, so I've kept something similar, which does
    make you feel a hypochondriac, but now looking back over the last nearly 3
    months is very useful.
    I finally had my 1st appointment yesterday via the NHS and the hostilty from the consultant to this dietary approach has left me reeling. I have never felt more bullied even to the point of virtually being threatened that I will be crawling in with permanent joint damage in 2 years time if I continue with this approach! So avenues for support and understanding seem very limited, I was even denied Physio as 'they'd be too scared to treat me if I wasn't on a drug programme'.
    So as I'm feeling particularly down today It's good to know there are other people
    out there with understanding.

  8. Kary, I'm so sorry to hear you've been having such a tough time! Much of the discussion of the long process of getting to see a Rheumatologist seems to focus on the effect this has on disease progression and treatment outcomes, but not so much on the personal and emotional impact - and it is the hardest thing to find that you can no longer rely on anything you thought you could, at a time when you are least well equipped to deal with that. Of course, when faced with a 3+ month wait for a first appointment with a Rheumatologist, you are going to do whatever you can to try and help yourself! Every time I have a flare, I go back round that circuit of 'what else could I possibly be doing to improve things?' It is a real shame that the consultant was so dismissive of your efforts, and also a great pity that other therapeutic services are not better integrated. It has been my experience that the consultant treats pain and inflammation, the GP refills prescriptions, and any other therapeutic input or support, I've had to seek out myself. I am deeply grateful to the blogging and Twitter communities for the understanding and support they provide beyond the pure facts and mechanics of the disease. I have also found Arthritis Care very good, both on their helpline and in the literature they publish. Do feel free to find me on Twitter or Facebook (same name) if you ever want to chat - and that goes for anyone who might be reading this!