Old Age

I often feel old these days.

Let’s face it, I’ve always been a bit of an old fuddy-duddy, but lately it seems to be catching up with me physically. I’m not as flexible as I used to be. Hubby laughs at me when I get up off the sofa and have to hobble for a few paces before I can straighten up fully.

Pudding looking back at the camera whilst he heads out of a ruined castle archwayI can still race after Pudding when I need to. Other parents will attest to that after seeing me go from 0-60 in two seconds when he’s about to head out the playground gate. But some days it’s an effort.

I turned 40 while I was pregnant with Pudding, and do wonder if I’d find it easier in a younger body. Lack of sleep really does me in – even nights when I’m only vaguely aware of him chatting can leave me exhausted the next day. And bruises I get from him last for weeks.

You might think that with age comes more experience, conferring an advantage in the particular battles involved in raising a child with special needs. But I’m privileged to know a number of younger MPS mums who are doing a bloody marvellous job at just that (waves hello – you know who you are!).

Of course I’ve often wondered if my age is actually the reason for Pudding having MPS. Hunter Syndrome is the only x-linked version of MPS. This means it is passed down on the ‘x’ chromosone from the mother only. I don’t have the gene deletion on my own DNA so Pudding’s case is from a spontaneous mutuation.

Of course I was aware as my single, non-childbearing years continued to pass that my fertility was declining. The ‘cliff-edge’ diagrams and comments about ‘selfish women wanting to delay children due to their careers’ are thrown at you by the media. The link between older mothers and increased likelihood of having a child with Downs Syndrome is well documented and I was prepared for that outcome when I was pregnant. But I’ve never actually dared to ask the question about a similar link in MPS – whether a spontaneous mutation is more likely as the mother’s age increases. I don’t think I really want to know the answer. It’s done now. I can’t change what’s happened. I always expected to have children much earlier but never met the right man until Hubby.

My worry now is for the future. As we age, what will happen to Pudding? Who will care for him and see that he is well looked after? With new treatments becoming available maybe he will beat the odds and kick MPS in the butt. But if he makes it to 30 years old, I’ll be 70. Current attitudes to disability and long-term care available in this country don’t exactly fill me with optimism.

Sometimes the thought of losing him earlier is less scary.

Gym

Many people consider going to the gym as a luxury. Not me.

Anyone who knows me will vouch for the fact that I’m not a natural exerciser. I’m not completely sedentary, but the idea of going for a run (heaven forbid!) makes me shudder. But I joined a gym in January and have defied the odds by actually continuing to go.

Last week, I got a slight cold and the lack of sleep led to my back grumbling. If you’ve ever had back pain before you’ll know how awful it can be. The idea of being crippled by that intense pain again was scary. I wasn’t just thinking about the impact on me, though that was a big issue; I’ve spent months recovering in the past while living on my own, which of course wasn’t much fun.

If I was to suffer pain like that again now, it would affect so much more though. If I was in pain who would push the heavy buggy to and from school? How could I drive Pudding to appointments and hold him still for the needles? How could I run after him in the playground, or wrestle him to the ground for a nappy change?

What happens when a carer is no longer able to care? I know Hubby would have done what he could but he has a full-time job. And what happens to those carers who don’t have anyone else to rely on?

Some trainers and a gym bagPudding weighs over 4 stone now and looking after him is hard physical work sometimes, particularly when I’m only 8.5 stone myself. My only solution is to make sure I’m as fit and strong as possible. Hence the gym. It helps that the place I go to is full of friendly faces and has a pool and classes as well, so it’s not just slogging on the gym floor. (I’m easily bored!)

The gym for me is not a luxury, it’s a physical necessity. And this week I realised that it’s even more than that. My mood took a bit of a nose-dive with the back pain, and even when I started moving better my mood didn’t. Eventually I forced myself out to do an easy work-out on the treadmill, etc, and I felt so much better all round. Yes, I know that exercise releasing happy endorphins is hardly a revelation yet it makes a difference finally realising it for yourself.

I’ll never be a proper gym bunny but I can admit that sometimes I do quite enjoy it! Maybe some day I may even get round to replacing my embarrassingly tatty trainers…