Saturday, 22 November 2014

Life with the Old Lady

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! 

Sunday, 2 November 2014

Moving On

The new little house
Well, it's been more than a month without a single blog post. And the reason for such tardiness? We've moved house...again. In fact, we've moved four times in the last five years so you'd think that by now we would have the art of packing and unpacking down to a smooth and seamless operation where everything is organised and reorganised with professional ease. You'd be wrong. Each time we move it seems to be more chaotic and stressful than the last.  Consequently, I have no useful tips to pass on to other potential house movers. Moving house for me is a bit like my tennis: the more I do it the worse I seem to get! So where I was planning a post full of useful advice I will instead regale you with a few 'home truths' about moving and a few glimpses of the new place (as long as you understand that it is still in a state of moving flux and this is not the finished Pinterest-worthy interior).

Home Truth 1: There's nothing like moving furniture to reveal the truth about your housekeeping
Yes, the neglect of every corner, the failure to hoover or dust adequately, the stains on the carpet - all will be revealed in horrible slovenly detail when the furniture is moved out and you're left looking at the empty carcass of a rather dirty house.  Fortunately, we have good friends who were happy to go along with my excuses about, 'That being a very difficult place to get to' or how, 'There's been no point in hoovering these last few weeks what with all the boxes everywhere.'

Home Truth 2: The curse of the random box
I think our main problem has always been to seriously underestimate how long it takes to pack. We start off with the most beautifully packed boxes, items carefully wrapped in packing paper, boxes clearly labelled. As moving day looms ever nearer, the boxes become more and more random until items from entirely different parts of the house are thrown in together, possibly wrapped in an old towel or just wedged in with the odd cushion. Worse still, the description on the outside of the box rarely corresponds with the contents and so could end up anywhere which is how the tv remote ended up in the garage.

Home Truth 3: Sibling rivalry reaches new heights
Room sizes are just the start, we've had arguments and bickering about the most trivial of issues in the new house, even lampshades, and the view out of the window, have been the source of disagreement. A sharp reminder that the girls now have their own rooms and that we could insist they share again have swiftly restored the peace and they are now enjoying making their rooms very much their own.

Home Truth 4: No sleep for the exhausted
It doesn't matter how tired you are after moving, or even if you've managed to somehow reassemble your bed and you're not sleeping on the floor, the first night in a new house brings no rest. I spent the first night with seemingly super hearing, listening in to every strange new noise and feeling disorientated by now sleeping east to west rather than north to south as we had in the old house. Getting up in the middle of the night to try and find the loo proved interesting as I tripped over packing boxes, the hoover and the cat basket in my attempts to find the bathroom in the dark. I would have turned a light on if I'd had any idea where the light switch was!

Home Truth 5: New is better
Moving tends to bring out the optimist in me and I view each new place in a positive light. This home has lots of lovely features. It's terrifically light to start with. The house faces east and sunshine floods in through generous windows. An oak-framed extension has been added to the side of the kitchen, originally as an artist's studio, but for our artistically-challenged family it makes a super dining room instead and I'm looking forward to decorating the beams come Christmas time.

View from the kitchen window
Despite being towards the centre of the village, we are tucked away in a quiet corner and surrounded by hedges making it feel private and the sheltered garden provides the perfect environment for a huge variety of feathered friends. Best of all, from the kitchen window I can just see the sea!

Warm &Cosy
With stiff and aching joints, I'm thankful to be on one level - no more stairs to drag the hoover up - hooray! This little house is on higher ground and well insulated and so we no longer have to endure the damp and mould that permeated the last house.

Luna has found her chair

Home Truth 6: Moving makes you thankful
Thankfully we are blessed to have the most wonderful friends who came to our rescue onec again and helped us to move. They hauled 'the impossible wardrobe' onto the van and friends who were not able to help move furniture, helped instead by providing a much appreciated delicious lunch for the workers.

The Wonderful Man was entirely wonderful and managed to sort out all the technology in the new house in record time (the Ryder Cup which was on at the time and various other sporting events proved a useful incentive). He also took more than his fair share of physical punishment as chief removal man - this eventually resulting in a very sore knee (he is still hobbling - bless him!)