Archive | October, 2012

I Need Help.

14 Oct

Independence is mighty important to me. As much as I love my mum, she’s incredibly difficult to live with and its almost relaxing to be away from that stress.

But at the same time, this is the woman who has showered me and wiped me after I’ve been to the toilet when I’m unable. I have always felt uncomfortable exposing my body even to myself, and she would stare at the walls while chattering away to fill the silence I left.

I would sit, slumped in the chair, as she lifted my right arm to wash the armpit and spoke about her own siblings.

Even after I moved out of home, she would come to the hospital everyday with fresh flowers from her own garden, more things I ‘might need’ and tidy up the area around me.

She wiped the vomit from my lips, replaced the bag yet again.

She’d hang clothes in the cupboard I could not reach, wash the sweat from my hair and then gently comb it out, and work it into a gentle braid so I wouldn’t vomit in it.

She would go and pay so that I could watch TV in my bed, even though I insisted I didn’t need it.

She would take me for a walk around the hospital grounds in the wheelchair, and then later, hold me up as I clung to her, taking those first steps again, rebuilding wasted muscles.

She would carefully lift the fork to my lips, and then polish off the rest of the meal I couldn’t face.

She would wait until the drugs kicked in, longing to see my wrought body relax, and scream for the doctor when instead of stopping me from vomiting, they coaxed me into a seizure.

Once she even managed to arrange to bring my dog in for a visit.

She would give me words of comfort on the long drive home after yet another specialist appointment. Another cream of the crop, top of his class doctor, who had gently smiled at me as he explained the treatment was not working, he didn’t know what to do. Maybe I should see someone else.

She would follow the ambulance in her little white car.

She would run red lights at night in the city, so we would get to the hospital a little quicker.

She would fight my battles for me, for I could not defend myself.

Now is different.

Now, I live 300km away from her. She cannot just hop into her little white car to come visit me for an hour, just to bathe me. Instead, that ball falls into R‘s court.

Now he is the one to double check all the medicine, to make sure I won’t have a bad reaction.
He is the one who brushes out my hair, and tries to get me to giggle through the pain.

He is the one who confronts the nurses when I’ve been in too much pain for too long, and they need to do something else, now.

He is the one to say, Enough is enough, we are going to the hospital.

He is the one who goes to the shops to get groceries because I haven’t been able to leave the house in six days.

He is the one who drives us to the park and back, because I love seeing the girls run around in the sun.

He is the one who changes the sheets in the middle of the night, and organises dinner when I cannot get out of bed.

He is not ashamed to push me around in a wheelchair.

He fights my battles for me.

But he cannot do everything, and I don’t want him to do everything.

He comes home from work, and I don’t want to ask him to clean the shower, mop the floor, get rid of the cobwebs. And sometimes, sometimes, I don’t need him to. But its been a long time now since he’s had a day off.

I spoke to my sister, and since my birthday is next week, she sent me some money. I’m going to have someone come in a few hours a week, to help me cope.

I don’t want to be ‘wasting’ money on something I ‘could’ do myself.

Coming to terms with the fact that I do need that help is hard. It reinforces to me the label ‘DISABLED’. I do not want to think of myself as disabled.

Nine years into this fight, and deep down I still believe that someday, things are going to improve, that I will be able to live a relatively normal life.

Or maybe I’m just starting to confuse belief with hope.



7 Oct

I’ve always loved my birthday.

I can’t work out why I still do.

In the past 10 years, I’ve only had one birthday spent out of hospital. And even then i was barely functioning.

And this year its a special one, marking the ten year anniversary of the death of my health.

Almost half a life, wasted. Mostly forgotten in a haze of medication.

So what do I expect, from the year ahead?

I wish for health, happiness and horses.

I expect hospitals, heat packs and headaches.

I suppose we can only hope for the year ahead to be better than the year just passed.