The Hot Water Bottle (and Other Stories)

Apparently, I learned this week, it's not normal to pack a hot water bottle for every trip away from home, or to use it constantly. I love my hottie!

Not only is it immensely comforting to have something warm to cuddle, it helps me to regulate my body temperature (something that my body is incapable of doing without help), and helps to soothe those myriad aches and pains.

At home, I have two hot water bottles - one of them has a knitted cover, and the other has a fleece cover. I find that concentrating on different textures and temperatures can distract me for a while when I'm taking life a few seconds at a time.

That's not supposed to sound melodramatic. It's just how things are sometimes.

Three of my main symptoms, pain, nausea and shortness of breath, can seem all-encompassing when severe. My world seems to shrink (or the symptoms seem to expand) until it's just me and the pain. Using all my senses to cling to the edges of reality gives me the illusion that I still have control over my world. I strain to notice every sound, every scent, every texture, temperature, taste, shape and colour.

Having said that, I realise that there are also times when I can't cope with even the smallest sensory input. My autonomic nervous system (the one that controls temperature, blood pressure, heart rate, etc.) is already so confused that sometimes even just light or sound can be enough to trigger everything to go pear-shaped.

My advice to myself seems almost contradictory:
1. Go with the flow
2. Be prepared

My symptoms can be unpredictable. I have no way of knowing when any particular joint (or joints) might dislocate, causing horrible pain; I can't control my autonomic nervous system, my blood sugars, energy levels, gastrointestinal symptoms or breathing. Sometimes things go wonderfully, blissfully right, and other times they go horribly, uncontrollably wrong. I don't get much of a say in which way things will happen, but fretting about it doesn't help.

What does help is planning ahead and having the right 'kit' to hand. I try to keep plans as flexible as possible, depending on symptoms, and when I do go out, I try to be prepared for all (well, most) eventualities. My handbag is sizeable. My husband says that it's bigger than the world, which is almost true. I do, on occasion, feel like Mary Poppins, pulling useful item after useful item from its cavernous depths.

The contents of my handbag are worthy of their own post. Watch this space...

The cat likes the hottie too

The Face Behind the Mask

I confess. I do it. Maybe you do it too. Before leaving the house, or even picking up the telephone, I take a deep (ish) breath and slap on a big smile.
My reasons for doing this are many and varied. I don't want people to feel intimidated or uncomfortable by seeing that I'm having a bad day. Or even just what I consider to be a normal day. People have enough problems of their own without worrying about mine, I tell myself.

Wearing the 'big smile mask' does have its benefits. No-one wants to live inside a perpetual pity party, and sometimes you do have to fake it to make it. Far from being hurt or offended when people tell  me that I don't look sick, my mask awards itself bonus points. I'm saddened when people offer me a seat on the bus; sometimes I tell myself that I must look radiantly pregnant, rather than pale, dizzy and nauseous.

I try to forget about the face behind my smiling, kind, generous and bubbly mask. The face that sometimes just wants visitors to go away so that it can be freed from the stifling burden of the mask, but that resents the loneliness and boredom of being mostly housebound and alone. The face that is pale from anaemia (and from lack of sunshine, and from the autonomic dysfunction that thinks blood is better stored in my feet than my head); the eyes that are ringed with the darkness of too many broken and sleepless nights; the mouth that is twisted with pain. This face cries out for people to care, and for them to offer the help that the mask so proudly refuses

This face is part of my reality.

But maybe the mask is also a part of my reality.

The mask allows me to step outside myself. It allows me to feel that the smiles directed at me are friendly rather than pitying, and that offers of help are chivalrous rather than dutiful. It allows me to focus on being the me that is buried beneath the hefty weight of chronic illness.

Maybe, in fact, the mask is simply a copy of the 'real me' that has become trapped under another mask - the mask of chronic illness and disability. Displaying this mask, though an inadequate, pale imitation of what I might be without the illness, allows me to be me.

And with that, I take another (not very) deep breath, slap on some bright lipstick, and take my mask out into the real world with me.