Well it's been a little while since posting. Don't worry, we haven't moved again! My excuse this time is the Old Lady who's been rather difficult lately and makes getting through the week feel like a battle. Who on earth is the old lady you ask? Well this is what I call Sjogren's Syndrome, a chronic autoimmune condition. You can read more about her here. As illnesses go it's not so serious, and I am really grateful for that, but it is downright annoying and makes me feel about 97 rather than 47. Plus, the weird sounding name is hard to pronounce (and spell) and no one has ever heard of it. Old lady syndrome seems more fitting.
At my last rheumatology appointment I was asked to describe the difficulties the old lady causes in order to work out the best course of treatment to manage her. Here's a typical day:
|Dr Ziodberg a.k.a Lobster hands!|
Morning time the old lady makes it really difficult to wake up. It doesn't matter how early a night I've had, or how well I've slept, I always wake up feeling exactly the same way I did when I went to bed...exhausted. The 6 o'clock alarm is like the boxer's count and even trying to lift my head off the pillow is a Herculean effort. Having got out of bed, the task of getting washed and dressed takes twice as long as my stiff and aching joints refuse to move. My children call me 'lobster hands' or 'Dr Ziodberg' after the character in Futurama as my hands tend to seize up making it impossible to do anything involving fine motor skills - I've lost count of the amount of mugs I've dropped. I have considered filming the pantomime of me trying to put on tights as I think it's worthy of You've Been Framed or YouTube.
Dry eyes are one of the most common old lady symptoms and I have plethora of gels and drops. Before I had this condition I thought artificial tears were something actors used to fake crying, now I use them around 8 times every day otherwise I look like Marty Feldman. People look in horror when they see me putting drops in my eyes. I think it's something lots of people are squeamish about but I've got used to doing this anytime, anywhere, even without a mirror.
|Marty Feldman (image credit. wampler foundation)|
Trying to work full time is hard and my job as a specialist learning support teacher is not one I can do from home. I am beginning to learn how to adapt my teaching to suit the old lady. As much as possible children come to see me in my little classroom rather than me go to them. They think it's funny when I whizz around the room on my office wheely chair and they love that they get to write on the whiteboard. My school have been really understanding and do not, thankfully, expect me to do a whole range of extra curricular activities.
The brain fog that seems to accompany so many autoimmune illnesses is one of the most frustrating aspects of life with the old lady. I have always prided myself on my ability to find the right word at the right time. Now I struggle to finish a coherent sentence and though I can come up with all sorts of words, they are frequently the wrong ones. Office staff were perplexed at my request to have something 'recycled' 30 times until they worked out I meant 'photocopied'. I've talked to bewildered pupils about 'exploding' a theme in an essay rather than 'exploring' it and I've written a very misleading report which warns against 'prototypes' rather than 'stereotypes'!
Having survived another work day, the 36 mile drive home is the hardest part. I don't really understand what 'cytokines' are but I understand all too well that the old lady likes to make lots of these and in turn they make me feel like I am starring in the Night of the Living Dead. By now the fatigue is overwhelming and I will need to stop and sleep. I often pull over into an out-of-town Asda carpark and slump over the steering wheel. Interestingly, no-one has ever enquired after my welfare; perhaps this is normal post-superstore shopping behaviour. I have to set an alarm on my phone otherwise I'd still be there in the morning!
Once home, I fight off the desire to go straight to bed and I try to do normal things. I long for a glass of wine but having a dry mouth, often with ulcers, (another old lady specialism) means that it tastes very much like paint stripper and burns my mouth and tongue. Curries and anything spicy are off the menu too. Old lady food is the order of the day - bland, bland, bland.
Sleep is instantaneous and I'm in bed before the children and long before my husband. Living with the old lady does little for your love life! I've just started a medication which I hope will help keep the old lady in order but it will take at least 6 weeks to kick in. There have been some side effects already but I'm still hopeful that it will make a difference. One of those side effects is vivid dreams but so far I'm quite enjoying the technicolour craziness of my dreams - they are certainly more lively than my waking life!