Month: March 2014

fifteen on Friday: people who make ‘snap’ decisions

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Fifteen on Friday is a space where I write about something related to my experience of disability and illness. It stems from ‘five-minute Friday when I followed prompts set by the originator of the site, and I do this with her blessing. It takes me fifteen minutes often, to type what others would type in five, usually just because I get so tired!

They don’t know me like I do…

This week, it’s a subject that really riles me, and so I will do my best not to rant. I should acknowledge as well, that I do this too, though I shouldn’t, given how annoyed I get when people do it to me. So what is it that so annoys me? I can’t stand people making ‘snap’ decisions based on a snippet of information, or on how I look, specifically snap decisions on the severity or lack thereof, of my disability, or that I ‘look’ healthy, so I am healthy, which just drives me mad. Someone else said recently that ‘I hide being ill very well!’ I think so too!

It would be a lot easier to say, ‘I know the truth, and it doesn’t matter what anyone else thinks’, but I’ve always cared. My friend known as ‘Chronic Rants’ blogged how it bugs her people always have to see the negatives in new treatments she tries, or tell her horror stories of how it went wrong for their friend’s friend, their mother, or who ever. Again, people making snap judgements based on a little information. Chronic Rants admits she does it, far too often. I do too. It still smarts when I am on the receiving end.

But you don’t look disabled!

If I am sat in a chair, or laid in a bed, I don’t ‘look’ disabled (nor would I want to). The irony is, neglect to take my cocktail of tablets and I look very disabled indeed, flailing about with arms and legs, shaking when I hold anything, doubled over in pain (which I often am even with the tablets). People see me looking ‘normal’ therefore and think ‘her disability is not that bad’ and voice it. I’ve even had a consultant pummel my arm years ago trying to find a vein, with me almost in tears ‘what’s wrong?’ he says.

‘My arm hurts a lot, cos I have cerebral palsy’

He says, incredulously, ‘You have cerebral palsy? Nobody told me (no surprise there!) But you don’t look like you have cerebral palsy’.

He’s not the only one. Nurses have made me walk because I don’t look disabled enough to need a hospital wheelchair, so I’d only have to walk the wee bit to the taxi) and others have asked ‘But how do you manage at home?’ Erm… that’s the point (of asking for help) I don’t. I have invisible disabilities, but I also have a physical disability that looks invisible in certain situations… weird!

However, they don’t see the exhaustion after a few steps, the physio does, or the pain shooting down my legs from trying to stay upright with a Zimmer frame after said steps. They don’t see all the things I can’t do that I have to ask ‘sidekicks’ to do, while wishing I didn’t have to ask so often. They don’t see me doubled over in pain, the professionals in and out of my flat, be they joint care manager, agency manager, nurses, ‘sidekicks’, other nurses for appointments, and house visits from doctors when I can’t even make it down a street or two to the surgery.

Yes, I know, I should put the violins away now!! I am thankful that I can talk (though others may not be when I just don’t shhhh!!), I have an electric wheelchair to get about (though it doesn’t fit in taxis — another story!) and I can move my arms and legs enough to do some things (eat, drink, choose lighter weight products in the supermarket, drive my wheelchair (badly…!) and so on.

It’s something I have to live with, but that will continue to bug me! I guess we all have pet hates like that!

Age, not just a number…

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Milestones, done differently…

I have a pretty good idea of which milestone I reached at which age, from talking to my parents over the years, from photographs or from my own memories. I was late to start walking and talking for example, though I’ve not stopped talking since. I was 5 or 6 when I put my crutches in the back of the wardrobe, and didn’t look back until I need a mobility scooter aged 18 at university.

I was 12 or 13 when I started worrying about boys, though wondered if anyone would ever be interested in me. I remember well the love letters from a boy called Danny when I was 14, who moved away shortly after, but I don’t think of him as my first proper boyfriend. However, by ‘proper boyfriend’ I mean someone that I really, really loved. That only happened last year, just before my 30th birthday. Things like that make me feel old, especially when I consider that by 25, my Mum had two children, effectively two babies, because of my level of need. I wonder now if I’ll ever meet someone, or even if I need to.

Babies everywhere, but not mine!

I don’t know whether I ever thought I would be married with children by this stage or not. I think my mum would say the former. I am more and more aware of my age as more friends get married and/or have children. Even the friends who like me were waiting to meet someone are now married. I’ve got to the stage where I can be genuinely happy for them, meeting up with a close friend and her baby regularly, who I adore. Also, Sunday school will have exploded in numbers in a few years. I love that I’ll still have contact with lots of children because of church. It’s funny, no way would I have said that before I got my electric wheelchair, but it somehow makes me more approachable to most children, and has helped me be much more comfortable talking to them. I am more at their height I guess, and some kids are fascinated by what the chair can do, or the golf ball controller.

Am I always defined by the number I am?

Recently, someone told me I ‘look good for 30’! A backwards compliment, for sure! I definitely don’t feel 30. Some days I feel old, when the routine of care and the sameness of every day gets me down. Other times, I feel young and insecure as though I were a school kid again… usually when something goes wrong in the house and I don’t know what to do.

I might like to do Uni over again, with carers to do personal care, and PA’s to help with library access and so on, as I didn’t have care until a couple of years ago, and no PA till third year. I wish I had been strong enough to ask for these helps though and been able to concentrate my limited energy wholly on my studies. I don’t think I realised I was entitled, or thought my disability was ‘bad enough’ even though tiny things sapped my energy. It’s so easy to say ‘what if’ and ‘if only’ though… almost everyone must have some regret about something. I was so intimidated by everything too, fearful, and never feeling like I was ‘good enough’ to be there… I guess that is where some mature students have the edge. Do I wish I were a different age though? Probably not, unless I had more confidence to with it.

My Grandparents, examples of how to age!

On a slightly different tack, thinking about age makes me think of my three grandparents, who are 78, 76, and 88. Generally they all keep in fairly good health and all have active lives. They are amazing, and definitely defy stereotypes of ‘elderly people’. I hope I am like them when I am older. All of them look young for their age. My Gran recently came to visit, and someone asked how only she was. When I told them, their jaw dropped in shock, and they said how strong and healthy she seemed for her age.

In some ways it is easy to tell they’ve got much older (for example, my granddad has two hearing aids, but he is 83) I don’t remember him having any health problems at all until a few years ago. Trouble is, aside from Gran’s diabetes, I have more health problems than them all put together!! Maybe I am the aged one?!

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I used the ‘Weekly Writing Challenge‘ prompt from March 10th, as inspiration to get me writing again. The prompt asked what age meant to each blogger. Above is what it means to me… but what does it mean to you? Why not have a go at your own post on ‘Golden Years’ and aging in general? (Click on the link in the sentence above to see the prompt) I’d love to read it!

The one with the Hospital…

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I do so hate all these absences from my writing. This time, it’s because I was in hospital. I am still in hospital, actually, just writing this from my room as my lovely Mum got mobile Internet sorted out. I am likely to be in for another 2 weeks at least so it is safe to say you can expect more blog posts. I do however, have to catch up with promises I made to write guest posts, and write the reflection on the Holy Spirit a minister asked for. At times if feels overwhelming, though not as much as when I was in my flat feeling shattered and wondering over it all.

It is easier to cope with things in hospital in some ways, because my parents are the ones watching my post and helping with paperwork and so on. My friends come and offer a very welcome distraction from the (sometimes) mind-numbing boredom. All I have to do is concentrate on two things; my relationship with Jesus, and getting better. Thankfully, I am getting better, though I did have entirely separate week-long stints in the High Dependency Unit after the first emergency operation and Intensive Care Unit after the second. Doctors are amazed I have come this far given what I have been through, but my Gran’s friend was right when she said God obviously still has a purpose for my life and work for me to do. After all, despite what society thinks, it is God who gives life, and God who takes it away.

I have had excellent care during this hospital stay, though it hasn’t always been easy. There have been times I have had to shout loudly to get the help I need with basic tasks such as washing and dressing, or cutting up food. People kept asking “and how do you manage at home?” Over and over, I’d say, I don’t, I have carers in three or four times a day. It reinforced negative feelings of not being good enough because I could not look after myself, which prompted me to speak up. This time I knew I had to ask for help to make my needs known. Once that happened I felt more comfortable around the ward. I did however raise the issues with an appropriate person. A bit unusual for me. I didn’t want others with multiple impairments to straggle as I had. One dept. generally focuses on their own issue to the exclusion of all else, which usually works fine, except in complex cases like mine.

 I’m on a ward again but in a side room, where nurses wear yellow aprons and purple gloves so no infection is passed from them to me or from me to them. Anyone with a cold or a bug has so far been sensible enough to stay away or keep their distance. As a friend said, anyone who visited me while ill, would likely leave me suffering with whatever they had, (as my immune system is so low) while being stuck within four walls (as I must not leave my room and mix with other patients, (again for infection risk) which would me absolutely miserable, on top of everything else – yuck!!

When I do get home, it may not be straightforward, as a different care agency will be assisting me. It was about time I moved… with everything that went on before. For now though I have to eat properly so the wound has enough calories to help it heal. (I have no skin on my tummy, because it’s just an open wound. However, the surgeon and his team have saved my life so I can’t grumble. It will heal in time. I’m off for a nap before the lovely domestic team are round with breakfast in an hour.