Sunday, 7 October 2018

How I Took Charge Of My Mental Health By Fundraising In Memory Of My Son



Eight years ago this month, I lost my three month old som Charlie to Meningitis. October has always been a tough time for me mentally as I suffer from Seasonal Affective Disorder (SAD) but now I find it even harder to get through the days, as I battle with my grief. For me, Autumn conjures up memoties of depth and despair. No more sitting outside in the sunshine. evenings with the children having water fight are long gone. The cold and grey days accompanied by dark evenings, all add to the depression I already suffer with. 


This year I decided to make a change. To take a positive step and take charge of my mental health. I wanted a challenge. Something that was fun and would keep my mind off what was to come in the next month. I also made the decision to combine it with some fundraising in my son’s name for Meningitis Now who gave us great support after his death.



I asked around and got some great ideas. One friend suggested a challenge called “Walk A Day In My Shoes” where I would wear a pair of borrowed shoes and take a picture, which I would then upload to my social media accounts. I’ve had everything from golf shoes to flippers! I'm disabled and in a wheelchair due to severe epilepsy, so the idea being, that as I can’t walk myself, I would be somebody else for the day.


Another friend suggested I sing a song a day. I’m well known by my friends for my lack of singing ability, so of course the requests for raps, rock songs and any tune I could murder came flooding in! I decided to link the shoe to the song, so for example I wore snow boots and rapped Ice Ice Baby! It has been lots of fun but most importantly people are contributing to a cause that is really important to me and my family. 


Being disabled means I’m not able to do a big marathon or climb a mountain, like most people would do for a big sponsored challenge. It limits me but I’ve made the best of what I’ve got and it’s been a huge success so far.


Since Charlie died, our family and friends have been busy fundraising over the years and we raised just over £37,500. In the past three weeks we have raised another £1,100 with my challenge. I intend to carry on for 30 days in total and then finish with a group song on the anniversary of his death. We want to involve as many people as possible to bring awareness of meningitis and of course, much needed funds for the charity. More details are on my social media pages if you would like to get involved.


It’s been really important for me mentally, to feel that I’m contributing to his cause and bring myself out of the depression I find myself in this time of year. Several friends have shared a meme which states “the trees are about to show us how lovely it is to let things go” but that couldn’t be further from the truth for me. Autumn is about loss,about death. I needed to make it about something more positive and what better way to do that than by raising money in memory of Charlie. Even if it means making a complete fool out of myself!

To read more about my fundraising efforts follow my Instagram page Yet Another Mum Blog or Facebook page Yet Another Mum Blog You can donate to Charlie's fund here and help us reach our goal of £40,000.

Sunday, 9 September 2018

"Walk A Day In My Shoes" Fundraiser



Firstly you need to know two important things about me. 1) My son Charlie died from meningitis, eight years ago, when he was three months old. 2) I have extremely limited mobility and I am a wheelchair user with severe epilepsy.

Ok, now we have those facts out of the way, lets get on to the good stuff! Eight years ago we set up a fundraising page for Charlie at Meningitis Now. The link to it is here. We have currently raised £37,741.06 and my goal is to reach £40,000 before 28th October 2018 which is the anniversary of his death. At the very least I want to get closer to my target and I'm prepared to make a complete fool of myself to do it!

As I am disabled I can't do a sponsored run or even walk. No skydiving or difficult training courses for me! I put it to my friends for fundraising ideas and they came up with some great ones.

Anyone who follows me on Facebook or Instagram knows I have a particular leg pose during the summer months. The first sight of sun and the legs are out! One of my friends suggested I recreate this leg pose whilst wearing shoes borrowed from friends. The crazier the better and I'm going to try and take pictures in some bizarre places, although this will be health dependent.

Another thing I'm well know for is my love (and lack of ability) of singing. Another friend suggested I sing some songs so I decided I would tie in a song with the choice of footwear. For example yesterday I wore my daughter's rainbow wellies (child size 10) and sang the song If This Isn't Love from Finian's Rainbow. I had never heard of the song or musical before so it was a real challenge for me to learn it. The person who requested the song then made a donation!

Today I borrowed a pair of football boots from my nine year old next door neighbour and sang the John Barnes rap from World in Motion! You see how it works?

My challenge is to do 30 days although they won't be consecutive and I will complete it by 28th October. If you want to see me looking absolutely ridiculous then please follow my Facebook and Instagram pages which I will keep updated with photos and videos.

If you want to read why this cause is so important to me and find out what happened to Charlie then his blog is here.

Any amount, big or small, will be very gratefully received. You can donate by following this link https://charlie-benjamin-mann.muchloved.com/ 

Thank you so much. 

Friday, 24 August 2018

We Need To Rethink Disabled Access In Public Places


After over two years in a wheelchair I can safely say the world is not a wheelchair friendly place. Yes, there are rules and regulations to follow and there are some measures in place to make places accessible. The Equality Act 2010 states that “public places must take positive steps to remove barriers disabled people face to ensure we receive the same service, as far as this is possible, as someone who is not disabled” (taken from www.citizensadvice.org.uk). That doesn’t mean common sense always comes into play though.

I’ve just spent the past 11 nights in a hotel in Ibiza. A beautiful holiday and quality time with my family in the sun. We researched the hotel before we went. As someone who is disabled, I feel like I’m almost qualified as a detective, trying to find a hotel with suitable access for my wheelchair.

The hotel we picked ticked all the boxes. Three lifts, ramps everywhere, we were on to a winner. On arrival it soon became clear that although these were indeed in place, the actual people in the wheelchairs (there were three of us while I was there) were an afterthought. Tables, sunloungers and trollies were placed at the end of the ramps. Lifts so small I couldn’t push myself into them with my self propelled wheelchair. Thankfully I had family with me to move items and get me into the lifts but there was no way I could have managed alone and a motorised scooter just wouldn’t have been possible. I realise it would have fallen under Spanish regulations and not ours but it highlights the issues disabled people face.

It’s not the first time I’ve had problems in public and i’m sure it won’t be the last. Ramps that have been at the bottom of a cupboard have had to be dug out for me. Special entrances to get into places draw even more attention to my condition. As a person in a wheelchair, I don’t want to stand out any more than I already do. 

I also want to be independent. I don’t want to have to ask for help. I’ve had nothing but kind offers from people who have carried me, lifted me and gone off to find the one person in the place with the key for the back door. What I want is to be able to access buildings like anyone else. As mentioned in the Equality Act, I want the same level of service as someone who is not disabled.

We might be a small minority but what about inclusivity? I don’t want to be different. I don’t want everyone staring at me while I’m carried around because my wheelchair won’t go up the stairs. It has reduced me to tears on many occasions and the humiliation is heartbreaking for me. It’s another reminder that the world doesn’t see me as important. That I am an inconvenience, another cost for businesses to pay and the hassle of getting the right equipment.

So what can we do about it? As a community let’s push public places to include disabled people, not just as minimum regulations, but as people with feelings. Put yourselves in our shoes. Would you want to live an independent life? If the answer is yes then please look at your access. Are all your customers treated as equals? That’s what we should be aiming for. I understand we are not their main focus and only represent a small proportion. If they have things in place then that’s great, make sure we can access them easily and make us feel like any other able bodied person. We want to be independent and feel included and there are many changes that need to be made to make that happen.

This blog was first published by The Huffington Post here  

Monday, 6 August 2018

Adjusting To A New Shadow - Life In A Wheelchair


This is a photo that I took on holiday last year but it’s a particularly poignant one for me. My shadow shows me in a wheelchair and disabled but inside I’m still the same person I always was. My shadow may be different, my life may be different but I’m still me. It’s photos like this that hit hard how others perceive me. They see the wheelchair, not the person who is in it. I feel like it’s my job to change this perception and remind people I’m still the person they once knew. 

I’m still Katy. I still have the same personality. I still love cheesy pop songs, dancing (albeit wheelchair dancing now), singing and going out with friends. I still get drunk on two glasses of wine! I’m still obsessed with historical fiction books and enjoy watching reality tv. I still have the same sense of humour and I’ve developed a love of writing which has become my purpose in life, alongside being a mum. I still want to be invited on nights out even if I can’t always make it. I don’t want to become invisible just because I happen to use a wheelchair to get around. 

My body is heavier thanks to the side effects of the many medications I take and, of course, older with wrinkles starting. The adjustments to my appearance have been tough for me to deal with. I’m very much about promoting body confidence and loving who you are but that has been a personal challenge for me. Putting on weight is out of my hands due to the medication I’m on, it's not something I have control over and exercise is out the question with the type and frequency of seizures I have. I’ve had to lower my expectations and not beat myself up for not having the perfect "Love Island" body. I’ll be 40 next year and I want to celebrate that. I’m lucky to be alive. Not all people with epilepsy make it to 40 and I went undiagnosed for 12 years. I have to accept who I’ve become and embrace it. I might not look like I did in my twenties but who does? 

Strangers and aquaintances don’t like to ask why I, overnight, went from a normal, healthy person to not being able to walk. The truth is, I’ve been ill for almost 14 years. Yes, I’ve had periods of being better and lived a fairly functional life, but I hid a lot of my symptoms from everybody except my Husband. I didn’t want to be dismissed by doctors yet again. I couldn’t go through the disappointment, after a terrible experience I had when I first got ill, back in 2004. This time I declined very rapidly in February 2016 and have been in a wheelchair ever since. Thankfully I've finally got a proper diagnosis, with Epilepsy, although it still isn’t under control. Now there is no hiding my condition. It’s there for everyone to see whether I like it or not. 

I’m always happy to explain my condition and I make videos about it on my YouTube channel, explaining the different types of Epilepsy I have and dispelling some myths surrounding it. I’d rather people came to talk to me than ignore me. Don’t be afraid to speak to people in wheelchairs. We are still human and a lot of us don’t think of ourselves as being in one until we catch sight of that shadow on the ground. Remember the person on the inside, don’t just see the chair. 

Videos Explaining Epilepsy and Dispelling Some Myths

Here are three short videos I made, which briefly explain the types of seizures I have and how they affect me. I also try to dispel some myths about epilepsy itself. Please follow my YouTube channel for other videos I upload!

Part 1



Part 2


Part 3


Thursday, 2 August 2018

My Breastfeeding Journey Didn't Stop When I Finished Feeding My Children

You’re probably sick of hearing about World Breastfeeding Week but bear with me, my journey is a little different. Yes I breastfed my three children but that is only a small part of how breastfeeding has affected my life for the past 12 years. Actually if you speak to any mum, every journey is different. It doesn’t matter if you breastfeed, formula feed, combi feed, however you do it, we all have a unique journey.
 
My eldest son was my most difficult. Reflux meant he was sick several times a day, didn’t put on weight and I constantly questioned myself and if I was doing it right. My second son was a very similar story but sadly he passed away from meningitis at 15 weeks old. Our breastfeeding journey came to a very abrupt end but my own personal story continued. I carried on expressing my milk for months after his death and donated 22,345 mls to Wirral Mothers’ Milk Bank who used it for premature babies. My third experience, with my daughter, was much easier and in total I breastfed my children for six years and five months.
 
That is only part of my journey though. In November 2007, five months after my eldest son was born, I trained to become a peer support worker. Mum-to-mum support in other words. I didn’t know at that point how many people would reach out to me for help. I had a fantastic mentor and together we went to speak to women who were unlikely to breastfeed. I took my 11-month-old son into a class of Year 11 girls and breastfed him in front of them. I’ve never seen so many shocked faces! Not only was it taboo to them to consider breastfeeding (rates were particularly low in that area) but he was almost one so he was doing nursing gymnastics (on, off, run around, back on again). 
 
I also went to speak to a group of pregnant teenagers who were open to breastfeeding but their families were dead against it. I gave words of encouragement and again a demonstration but I knew they were fighting such a tough battle. I often wonder about them and if they were able to push past those barriers. I can only hope I had some small amount of influence on them.
 
I became a volunteer at my local Children’s Centre and each week offered advice, help or just an ear to listen to those who needed it. I became an advocate for people who needed help, taking part in local news segments and online support groups.
 
I’ve always been very vocal on social media about what I have learnt so friends have been able to contact me and I’ve supported them through the tough times. My motto is “my inbox is always open and if I don’t know the answer, I will find a person who does”. Mum-to-mum support is vital and that doesn’t matter how you choose to feed your baby. I would also offer the same support to anyone who was formula feeding.
 
I’ve been advocating for mums for almost 12 years now and I will continue to do so as long as the need is there. As there are more and more cuts in services we need more people to do the same. Let’s forget the mummy wars and be there for each other. It’s something I feel very passionate about. If you need me, I am always there to listen. Let’s stop the judgement and don’t be afraid to ask for help.
 
This blog was first published on the Huffington Post website here 

Tuesday, 31 July 2018

The Summer Holidays Are A Whole Different Ball Game As A Disabled Parent

Today marks the first day of the long, oh so very long, summer holidays. Most parents are either tearing their hair out wondering how to entertain their little terrors (this only becomes a phenomenon in the holidays and weekends, they are perfectly normal human beings at school) or perfectly planning a strict timetable of activities to keep their little angels entertained. 
 
As a disabled parent, the school holidays are a whole different ball game. It takes an army of people to care for my children. I can’t even compare it to that of a working parent as I’m not even able to put my children to bed myself. The people involved in looking after my children take care of them from waking up to going to sleep.
 
Each week my in-laws very kindly take my children out to various locations to let them burn off some energy. My dad even makes a four-hour round trip one day per week to come and help out. My in-laws have them the rest of the week. They all go far above and beyond their duties as grandparents. I also have friends who arrange play dates so I can be involved with the kids. Friends have offered to have us round for the day which means I can spend some time with friends and proper time with my children.
 
Without all these people in our lives, we wouldn’t be able to survive. I can’t work due to my uncontrolled epilepsy so a holiday club is out of the question. It’s just not affordable when you aren’t working, to have two children in childcare when they are school aged. Juggling the kids is a military operation. Diaries out, who can do what day? I would give anything to be able to keep my kids at home or take them out by myself.
 
I can’t look after myself without two carers to help so it’s just not possible for that to happen. I look longingly at pictures of friends on days out and wish I could do the same. It’s hard for the kids too. They adore their grandparents but it’s not the same as being with mum. I can’t even go with them because I get too tired and ill. I can do the odd day here or there at someone’s house but that’s all my body allows me to do. 
 
Thankfully my husband is able to get two weeks off and we get to have quality time together as a family. That is the highlight of the summer break for me. Time where I can pretend to be a normal mum and get fed up with my kids fighting. I feel these days with my children are slipping through my fingers like sand. Every day is a day of their childhood I have lost. The summer holidays brings this home even more. My 11-year-old son’s Christmas wish in his school book was for me to get better so I could spend some more time with him. It broke my heart. 
 
I’m pushing myself as hard as I can, to be physically with them more and to get out to places, with help from other people of course. If only I could wave a magic wand and be back to the mum I was two and a half years ago. My youngest barely remembers me like that. Summer holidays can be the best and worst of times.
 
Don’t take for granted the time you do get to spend with your children. I know they are a pain most days, all kids are, just remember those who can’t and who wish they could be tearing their hair out too. I look back on photos of summer holidays gone by and the never ending days, wishing it was nearly bedtime. Now I’d happily go through that again. I’d still feel the same but at least it would be me getting fed up of them. 
 
Life with a disability is tough. Everyone knows that. It’s the milestones you miss out on that are the hardest though. In a blink of an eye there won’t be any more summer holidays left but I hope to be back to being mum again before that happens.

This blog was orignally posted on the Huffington Post website here