The Pitfalls Of Social Media With A Disability

I think everyone who uses social media has a moment of crisis at some point asking whether they did the right thing when sharing something. I think this is especially true for people with disabilities. I know I worry constantly about whether I’m oversharing, moaning too much or pretending my life’s perfect when it’s not. Overthinking?? Oh yes, definitely! 

Last week I went away with my family for a few days and as a big social media user I posted lots of pictures of us having a good time. I took loads of selfies as my usual view is either of my bedroom or garden with me being housebound. Then I panicked. What if people thought I was faking my illness? What if people think I really looked that good? Was I presenting an image that wasn’t real?

To counteract that, I posted a status about the realities of my week away. How all my photos were taken from wheelchair height, I was pushed round all day and straight into bed at the end of each afternoon. How the activities wiped me out each day even though I wasn’t really doing anything. Every selfie took good lighting, makeup and a filter. I’m 38, I have wrinkles, the odd grey hair and a mummy tummy. I try to post the good and the bad but I draw the line at the ugly! I want to feel good though, I want to feel human after being ill for so long. Is it wrong to present myself in the best way after living in pyjamas in bed for so long?

Then I worried I was sharing too much and moaning about my ailments. So where does that leave me? If I don’t post on social media I become lonely and isolated. I’m at home on my own all day and online contact is a lifeline to me. I can chat to friends without the difficulties I face in leaving the house.

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Do people want me hear about the realities of my day to day life? No, probably not. Do people complain when we only show our good sides? Yes! There is no winning with social media. It’s a fine line and I’m not sure I tread it well. 

I’m an open book and try to be as honest as I can about my life. Today I started counselling almost eight years after the death of my son from meningitis. To say my life has been tough is an understatement. 

It isn’t all bad and I want to show the good bits too. The days I get out are few and far between and if I’m wearing clothes and make up you know I’m going to post a selfie! 

Social media is a blessing and a curse. It’s a beast that has taken over my life but has saved me in so many ways. It’s helped me raise awareness of many issues close to my heart and for me, writing is a form of therapy. It’s not something I’ll be giving up so I’m afraid the selfies are here to stay!

This article was first published on Huffington Post UK here

I Would Encourage Others To Speak To Young Children About Life With A Disability

This week I’ve been into my daughter’s class to talk to the children about living with epilepsy, disabilities in general and using a wheelchair. The children are in Year 1, so five/six years old, and are at a perfect age to learn that everyone is different and that’s OK. I also wanted to teach them empathy towards others with disabilities, whether they are other children in their school or people they come across in the street.

I started by telling the class I have epilepsy, which is a type of disability. I asked them what they thought having a disability meant. This prompted many funny responses such as, “It means all your bones are broken” and, “You can catch being poorly from someone else!”

I told them having a disability means something that stops you from doing normal everyday activities. I wanted to explain to children that some disabilities are obvious, like me in a wheelchair, and some are on the inside and you can’t see them. I wanted them to understand you can’t always tell if a person has a disability just by looking at them and invisible disabilities are very hard.

I highlighted the differences we all have such as hair and eye colours. I went on to say some people are tall and some people are small. Some people have special talents. I explained that my brain is just different to theirs, even though I use a wheelchair I can still do things like write stories, go to the park etc. Sadly not to play football, as one child asked me! Although we did figure out a way I could do this if I really wanted to!

I told them it’s OK to ask someone why they have a disability. I prefer that than people just staring at me. Most people will be happy to answer questions and explain what is wrong with them.

I wanted the children to realise that some people with disabilities get better and some don’t. I told them I have two people called carers who come to my house everyday and make some food for me as I can’t do that. I need lots of help but some are able to cope on their own. 

I use a wheelchair because I have epilepsy, which means my brain doesn’t always do what I want it to do. I went into a little more detail to say our brains control our bodies and when I have a seizure it’s like a little cough in my brain that briefly stops a part of my brain working. For older children I would have explained more about brain waves and how seizures affect the patterns of the waves. The children I was speaking to needed a very simple explanation.

I explained further that seizures can happen in different parts of your brain so they affect different parts of the body. Mine affects the muscles in my legs and make me fall down. I use a wheelchair to keep me safe and it stops me from getting hurt. 

I told the children I take tablets from a special brain doctor called a neurologist to help my epilepsy. The tablets can make me tired and I have to spend a lot of time in bed. 

With the help of the teacher we asked the class questions such as, ‘can you imagine what it is like to have a disability?‘,’ how do you think it would feel,′ and ’what things would you have to do differently?′

It’s really important to talk to young children about people with disabilities and I would always encourage someone with a disability to go and talk to children. They are naturally curious and ask you anything that is on their mind. It is the perfect opportunity to shape their thoughts and encourage them to treat people the same. The main message I wanted to get across was that I am different, but we are all different, and that’s a good thing.

This article was first published by the Huffington Post UK here

Depression

Depression. It's not a cheery subject but one with stigma and very misunderstood. You can still be the life and soul of the party while wondering how your family would cope without you when you're on your own. I try to be real with my social media statuses and the ones you see me having fun with my family are very real. I *am* having fun. I have a great set of friends around me and I laugh lots. I sing (badly) and I have people who still love me despite this. Statuses about isolation and depression aren't such a crowd pleaser though. My reality is I'm bed bound unless someone is with me. My son died. I can't even go downstairs and get cornflakes on my own. This inevitably leads to depression. 

The truth is on Friday I came of some tablets I've been taking for over six years and yesterday started some antidepressants. The reality of that is terrible withdrawal symptoms and a brain that won't shut off. Did I have a great time today? Yes! I'm still suffering though. Suffering is a great way to describe depression as you really do suffer. You don't live with it, rather it seaps into your brain as a result of chemical changes and distorts your perspective. Mine is mainly circumstantial but with a family history I am probably more prone to it. 

There is so much stigma surrounding depression that we must open up more and talk about it. It affects so many people. When I broke my foot I stubbornly waited two days before I went to hospital. With my depression it's been months before finally on Thursday I said to chris I can't do this anymore. I need help. I went to the doctors and she'd heard it many, many times before. I'm also getting counselling so I'm feeling positive I will get my mental health back. It's not all rocking in a corner. It's highs and lows and trying to get through one day at a time. It's not an easy subject but I've proven in the past I'm strong and if this inspires someone else to get help then it's worth it. 

VEEG

Thanks to my Dad putting pressure on the hospital I should be having a VEEG before early February. This means I go onto hospital and they stick things all over my head, wrap me up like a Mummy and film me from another room. Sounds like a weird film but hey that's my life! The idea is to see where and how frequently the seizures are. Hopefully it will give us a bit more insight into the workings of my brain. In the meantime I have to spend 5 days in a room by myself for the most part. I've read I might have to be tied to the bed. Definitely weird film material. 

New Year, New Start

Well it's a new year and about time I started writing again. The truth is I have been very depressed and lost my will to write. When I lost Charlie I had something to fight for, a cause to get my teeth into. I battled through it and it gave me strength. This time I have no strength. I've been robbed of time with my friends, looking after my children, evenings with my husband. I've lost my life in the past two years. I have no way of fighting it and that's when the depression hits. This isn't me. I'm the first on the dance floor, the life and soul of the party. Not the one stuck in the wheelchair watching life pass me by. This is the year I have to try and fight back and get the neurologists to do more. Except I can't because my medication knocks the fight out of me. That's where my family come in who fight on my behalf. I refuse to spend the rest of my life like this. Even though the neurologists have little hope of getting my seizures under control I have to cling on to that hope. I will be back on that dance floor with no wheelchair in sight. 

Two Boys Named Charlie

Today baby Charlie Gard passed away. I think we all felt a little of what his parents must have gone through. They fought so hard to keep him alive and for them every second counted. Every hour with their Charlie mattered and was worth fighting for. In our case we were told the day before that our Charlie needed his life support turned off. We were given the recommened option of doing it that day or waiting until the next day when everyone could come and say their goodbyes. The reason they recommened the same day was because they were worried one of his seizures would kill him but we insisted on waiting. Thankfully he survived long enough for him to have a peaceful death with the two people who loved him most in bed with him.

Our thoughts are with Charlie's parents and the long road ahead of them. We've just passed our Charlie's 7th birthday and although the grief is different it is still there. More of a loss of someone who should be here. We think about our Charlie every day and no doubt the Gard's will do too. We send them lots of love.

Things Can Only Get Better

I decided I would update today but I didn't realise how long it had been. The reason I've been so quiet is because I've been so bad. We had a fantastic holiday to Majorca in May although I was very limited in what I could do. That's why you have lilo's though! I lazed around the pool and slept a lot. The kids had a brilliant time and that's the main thing.

The trip almost killed me (perhaps slight exaggeration!) and I spent ten days in bed recovering. I'm still bad now and can barely walk. It's going to take me some time to recover and this heat doesn't help. Last week I had one night where I had seizures all night and neither of us got any sleep. Things were improving a little before I went on holiday so it's even more frustrating.

It was James's birthday last week. My first baby is ten! Chris's parents kindly offered to host his party which we were very grateful for. We had fantastic weather and the paddling pool out. Five very happy cousins!

Last week I also had two appointments in one day at the Royal Stoke hospital so we decided to set me a bed up in the back of the car. I'm sure that didn't look too dodgy at all!! Still it was better than travelling home just to come back.

Today I'm shaking so much I can't even use the touch screen on my phone. Typing on the computer is a little easier but I was struggling to text before.

To quote D:ream...things can only get better