Monday, 24 November 2014

The little things are the big things

My feet are ALWAYS cold. Not a bit cold but freezing like blocks of ice. For this reason I am never without a pair of bedsocks. 

There now follows a story about bedsocks. 

A few years ago I took suddenly and seriously unwell whilst at work. I was taken by ambulance to the nearest hospital to my workplace. I spent a week in an acute admissions ward, being woken hourly, day and night to have lights shone in my eyes and bloods taken. There were scans and talk of brain tumours and stroke. Things were rough with my condition and I had the most frightening experience of my entire life, which I am not ready to tell you about yet. 

The care in this ward was excellent, however as it was an acute admissions ward patients were coming and going all through the night and machines were beeping and buzzing. The bright lights were kept on all night. Visiting hours were strict and there was no visiting at all on certain days. I couldn't handle the emotions and stress and broke down, causing my parents to insist I was moved to a ward with more visiting hours. 

How is this a story about bedsocks? Stay with me.... they're coming soon..... 

Before I understood what was happening I was wheeled into the ward next door. This ward was not shiny and clean, sparkling white or bright at all. In fact it was mostly beige, brown and tired. I panicked, had I gone from the frying pan into the fire? Until, that is, I met someone very special.... I will refer to her as C. 

She was like no one I had ever known before. Slouched back on the bed eating sweets, she welcomed me to the ward as if it were her own home. She introduced me to the other bed dwellers, who either nodded and said hi or stared vacantly into space.  She told me who to watch (one lady went wandering during the night and stole stuff, one lady had dementia and had soiled all of C's clothes and the other lady was very poorly and unresponsive). It was quite a collection! C had been there for many weeks and knew the ropes. I was the newbie and she took me under her wing.

The care in this ward was unacceptably poor. No-one wore name badges, people's medicines were lost and no effort was made to find them, auxiliary nurses spoke loudly through the night with no regard for patients trying to sleep. I heard C stick up for the lady who was too poorly to fight her own corner, and one night she sat and held the hand of a lady who was distressed and crying. She held her through the night and got no sleep at all, but sleep was less important to C than comforting others. I don't know what would have happened if she hadn't been there, I was too ill to get out of bed and when I buzzed the nurse she came in, looked and walked away. 

I could tell you much more about C. I could tell you how she had a football team dressing gown and tattoos. How she spoke with a very strong accent and how I automatically judged her as 'not my kind of person'. How she addressed my dad as 'buddy' or 'bud', and how it made her laugh to do so because she thought he looked terribly posh. She imagined he had never been called this in his life before, and I think she might have been right. But I think I'll stop there, as somehow it feels like betraying her trust to tell you more. 

Except for one more fact. When her clothes were soiled (by the wayward patient mentioned above) they were sent to the hospital laundry. They all came back, except for her bedsocks. (See- I told you bedsocks would feature eventually!) Every day I heard her ask if they had been located. Every day she was told they were still lost. Her family lived far away and didn't visit so she couldn't ask them to bring another pair. I wondered if anyone was even looking.

 I had asked my family to bring in my own favourite bedsocks and had been wearing them every day. They were a gift from my husband one year and nothing fancy or expensive, but were just the cosiest bedsocks I had ever owned. I actually loved them. I decided to wash them through, and once they were dry I tried to give them to C. Of course she wouldn't accept them as she didn't want my feet to be cold.

I was waiting on a bed in a specialist hospital for further investigations, and one day when C was out for a cigarette some ambulance men appeared with a stretcher... "Your bed is ready...Can you transfer yourself?" and before I knew it I was on my way to the other hospital. I was distraught- I never got to say bye! I just had time to leave the bedsocks on her bed before I was whisked away. But I needn't have worried, after arriving in my new hospital I received a phone call from C with her mobile number on it. I wasn't getting away THAT easily!

We stayed in touch by text, she made it home but ended up back in the hospital. I tried to visit her but she was isolated in a room of her own and only immediate family were allowed in, and only if they wore masks. I couldn't really understand why and her texts weren't making much sense. She then got home again and we tried to arrange a meet up. 

I hadn't heard from her for a couple of months and decided to look at her facebook page. There was an 'RIP' message on there..... the floor fell away from me. How can she have died? How can I not have known? What happened? When? How? How could I find out? I looked up the local paper and found an obituary. I left a message on her page, I messaged someone who appeared to be her sister, but I couldn't be sure as I was going by FB posts. Would I ever know what happened to her? 

I did find out in the end and managed to tell her sister what a comfort and joy it was to have known C. It made me feel better that her family knew how much I thought of her. And it sounds stupid, but all I could think about was her feet. Were they cold? Please don't let them have been cold. Please let my bedsocks have brought her some comfort, warmth and heat in her difficult days, please let them have made her feel loved. 

This is not only a story about bedsocks, but a reminder of how the little things in life are actually the big things. I would never usually have spoken to someone like C, but now I realise how snobby that would have been. What a special person she was. What a comfort it has given me knowing that her feet were warm in her hospital bed. How silly.

Sunday, 2 November 2014

The girl in the corner

I was never the quiet girl in the corner of the room, but I am now. If you were to invite me to a social gathering (pre-illness) I'd have been there like a shot, with a drink in my hand (usually because I was such a slow drinker it took me all night to drink it!) having a dance or a good old gab and a giggle. I especially loved an impromptu night out, or one that started at lunchtime and unexpectedly carried on until the early hours. And if it involved dancing to cheesy music then even better!

But now things are very different. I cannot remember the last time I made it to a bar or club. I only make it out of the house about once a week, usually to medical appointments or short trips with friends, and I always have to have someone with me. When I do make it out to social events, I am either in my wheelchair or plonked in a chair, often in the corner. Sometimes by the time I get there I am too tired to talk very much, and I find making conversation with strangers very draining. 

You'd be surprised how exhausting it is to form facial expressions too- when I'm really tired I can't make a lot of facial expressions and end up looking 'glaikit'... a good Scots word for looking vacant. I often tell my family 'I'm not sad, I just don't have enough energy for facial expressions right now'. 

Then there is the problem of the music. I love music, I really do. I have always listened to music, played instruments and danced around the kitchen but I can only listen to fairly calm music now and only at a very low volume. If there's music playing I just don't have the energy to speak over the top of it, and if I manage to it sometimes makes my throat scratchy and sore (and recently has given me chest pains like a chest infection). 

And I am very sensitive to light. People think my sensitivity to light and loud noises is a dislike thing, or some sort of grumpiness. But being exposed to bright light and noise can cause real and painful physical sensations in my body which are nothing to do with preferences. 

My friends are brilliant with all of this, but I often wonder what people who didn't know me 'Pre-M.E' must think of me. Do they think I'm quiet and shy? Or fussy? A diva? Or just plain weird? Am I the girl in the corner?

I'm still the same girl that I always was.... I just have many new limitations now. I suppose you should never judge a book by it's cover.