Tuesday, 13 January 2009

Easing an amber day

I am having an ‘amber’ day today.

You may be wondering what the hell it is I am talking about. Let me explain: it comes from the ‘code’ I use as a way of expressing quickly and simply to others (my friends and family mainly) ‘where I am at’ on that particular day, because as many ‘loopies’ know, how you feel can very hugely day-by-day. This means it is not possible to know how well I might be from one day to the next. (I admit that if it wasn’t something I had experienced, I would probably be very sceptical. I’d probably think it was an excuse for someone to be lazy or to avoid things when they fancied it – so I fully forgive any ‘doubting Thomas’s’ out there, but I assure you it’s true and it’s a real pain!)

A ‘green day’ is a good day where I have a fair level of oomph and feel well in myself. A ‘red day’ is when the lupus has flared and I am unwell with symptoms. An ‘amber day’, like today, is when I just feel inexplicably ‘low’. There may be some obvious symptoms, but really it’s just an incredible lack of energy, like the bones in my limbs are made of lead and any ‘get-up-and-go’ has been suctioned out of me.

It struck me today how much better I deal with ‘amber days’ these days. I used to ignore what my body was saying and used shear inner stubbornness to force myself through whatever it was I had planned for that day, however manic, stressful or energetic. I now refer to this as ‘overriding’. It is my will versus lupus. This was OK in the short term, but eventually it caught up with me and lupus won. All in all, I learnt the hard way - it’s a bad idea!

Today is a good example of the new ‘reformed’ me, which seems to mean I am able to live much better with lupus.

My ‘to do’ list for today was quite extensive, but when I found this morning I was on a lower ebb than I would have liked, I looked at the list and realised that there were only certain things that I had to do today (some work emails and go to the hospital for my blood tests), so I prioritised these. Everything else has been ‘bumped’ to tomorrow’s list (I’ll review it and potentially re-juggle again depending how I feel – work for next week and housework can wait a while).

Tonight’s dinner is going to be something simpler than I had planned – but still tasty and healthy. Tasty is important to keep the spirits up, but I also feel healthy and nutritious is important so I know I am giving my body the best chance to restore itself. For any ‘amber day’ I recommend this Nigella Lawson Recipe (that she aptly calls ‘Noodle Soup for Needy People’) for tastiness, nutrition and general ‘feel good’ factor – although if I don’t have the ingredients I just vary it a bit to fit whatever ingredients I have in my fridge:

On an ‘amber day’ I now make a point of doing some ‘restorative’ yoga, which involves using yoga poses that have a particular ability to leave you feeling nourished and well rested. If you are sceptical about yoga (as many often are at first), you could think of it as ‘active relaxation’. It certainly uplifts me a bit – it helped a lot today. I will write more about the many ways in which I find yoga helps improve life, and how I find it is especially helpful for dealing with lupus, in the future but for a bit of general info now see:

For me drinking Jasmine Green Tea and a telephone chat with a friend are also great ‘amber day’ props. I also find if I can, pottering about doing easy and gentle tasks helpful because it means I feel like the day has been constructive (today I re-potted a plant that had needed doing for ages which required minimal effort, but getting it done still gave me a sense of accomplishment and satisfaction). I’m just wondering if it would perhaps be worth ‘storing up’ these sort of easy, more ‘pleasurable’ tasks especially for ‘amber days’?

Today I also took a short walk (and coincidently bumped into a friend with her baby, which was a nice surprise) as I knew from past experience that cabin fever makes ‘amber days’ worse. One ‘loopy’ in our research gave an excellent tip: unless it really isn’t possible, always get showered and dressed at the beginning of the day, even if you are not going anywhere. It makes you feel far better than lolling in your PJ’s.

All in all, today hasn’t been so bad. In fact, I’d go as far as to say that going along with the whole ‘amber’ thing, rather than resisting it has turned a day that would have been a real struggle into a relatively good day.

And, I am hoping that on top of all this, an early night tonight will be enough to make tomorrow ‘green’.