Tesco changing signs for accessible toilets and Changing Places

I was thrilled to hear that Tesco are changing the signs on their accessible toilets to recognise that not all disabilities are visible.  As a Community Champion for Crohns and Colitis UK, I spoke out about my thoughts on the change.

There are times when going to the supermarket and doing my weekly shop feels more like climbing Mount Everest. I have Ulcerative Colitis and a permanent ostomy bag, which means sore joints, fatigue and occasionally the need to change my ostomy bag whilst out and about in public. Yet, to look at me, you wouldn’t be able to tell that I had any extra needs.

When I called out the people who tutted, laughed and judged me for using an accessible toilet on my blog, I never expected the enormous response I received from people who had faced the same issues, my story was read 2 million times and shared all over the world!  It was heartbreaking to read how many similar stories people had.  From people with all manner of ‘invisible disabilities’, there were those with dementia, cancer, Tourette’s, people with ostomy bags or other toilet needs whose lives were being made more difficult by the judgment and ignorance of others.

To know that supermarkets are now listening to us, to know they are making a positive change in signage to alert the public that not all disabilities are visible, simply means the world. It means that the next time I am facing my Mount Everest moment, those around me might just have learnt enough to stop judging and know that sometimes there is more than meets the eye.

Thank you Crohns and Colitis for having me on board!

ibd blogger office loo toilet ulcerative colitis

 

Though it is a really positive change for people with invisible disabilities, accessible toilets still have a long way to go to be truly accessible to everyone.  The Changing Places group campaign for accessible loos to all be fitted with proper hoists and large changing benches.

We cannot call toilets accessible when they are still excluding a large number of people.  Imagine having to lay your loved one down on a urine stained, dirty floor to look after their sanitary needs, this is the reality for many families.

So whilst I cheer for the change in signs, I stand shoulder to shoulder with Changing Places and want to live in a world where toilets truly are accessible to all.

 

Sam x

2016 – a year in review!

I started this year with two hopes, no surgeries and no house moves.  I did both! Two massive ops and one house move!  I thought it only right to have a look back at how 2016 treated me, to be honest, it wasn’t great, there were some extremely dark and sad times, but there were also moments of pure joy.  So here we go…

January

I started 2016 in a bad way, I had had chronic pouchitis on and off for over a year and I was so drained and fed up, I talked about it in my post about what chronic illness is really like.  That was all to change quite suddenly though when it was decided to remove my pouch and create a permanent ileostomy on 4th January.  I had my jpouch, rectum and anus removed and my new stoma formed, it was a TOUGH surgery and I came round feeling battered, bruised and done in.

Then just weeks afterwards came the shock death of my grandfather.  The whole family was devastated and I had to deal with the funeral and mourning period whilst being in a very difficult recovery.  All in all, January was shit.

ileostomy bag stoma ostomy permanent ostomy after jpouch removal

 

February

February was all about recovery, and celebrating that The Plug nightclub in Sheffield raised lots of money for Crohns and Colitis UK in my name!  I went shopping for clothes that fit with my ostomy and felt a bit down around my difficult recovery and also had phantom rectum!

clothes and ostomy ileostomy colostomy fashion

March

In March, I wrote a letter to my babies that still makes me cry, it was about how proud I was of how they had dealt with my illness and surgeries. It was an emotional month and I think all the stress on my mind and body were stirring up a lot of old feelings, I decided to write about a time in my childhood when I was groomed and faced sexual assault.  It was scary to write about but I was really proud to speak out, I went on BBC radio and was in Red magazine and I got so many brave and beautiful messages afterwards from women thanking me for talking about it.

I also wrote about my wonderful best friend and reviewed #ToyLikeMe toys that represent disabled children and also Sea Sponge tampons!  Oh, and we moved house!!

sam cleasby caroline hayes

April

April was an exciting month, my sister, brother in law and nice visited us from Australia and I couldn’t have been happier!

I also reviewed the Riksack which ended in me going on This Morning and sitting on the sofa with Phil and Holly! An absolute highlight of my career!!!

I wrote a really popular post about why I show off my ostomy bag after reading some negative comments about people who choose to show photos of themselves online with the ostomy bag on show and Timm and I attended the Get Your Belly Out ball which was amazing!!

this morning ostomy colostomy ileostomy sam cleasby so bad ass

get your belly out ball sam cleasby

 

May

I took part in the GirlGang photography project #SeeMySelfie which was lots of fun.  I also found out that I had not one, but TWO hernias and would have to face yet more surgery, I was absolutely devastated.

I shared the videos that I had been in for Opus Healthcare about ostomy care, and reviewed the brilliant Vanilla Blush ostomy underwear. I went on Sheffield Live TV again and went on BBC Sheffield sharing My Life So Far with Rony Robinson.

sam cleasby girl gang sheffield see my selfie

 

June

In June, the past 6 months of surgeries, loss, recovery, hernias and tough times caught up with me and I finally spoke honestly about how I was feeling and my mental health.  I had been having anxiety attacks and very low moods for months and I was finally ready to speak out about it.

June also saw my birthday, I have always wanted a surprise party, and Timm has always said that I would never have one because I always ask for it! But this year, he got me! It was wonderful fun and really lifted my spirits in what otherwise was a dark month.

sam cleasby surprise party sheffield blogger

July

I didn’t blog in July, I wasn’t great mentally and decided to put my time into family and friends.  I spent a lot of time in the allotment, went to a few gigs that my son’s band Goathead played and also enjoyed Tramlines.

I worked away with Responsible Fishing doing their Camp Cardboard project and generally tried my best to just get through each day.  It wasn’t a great time but I tried to make the most of it.

sam cleasby sheffield blogger

August

I went on holiday to Cheddar with Timm and the kids in August and had a great week camping.  It was the summer holidays, so I spent lots of time with the kids and Timm, going for walks, picnics, days out and more and after weeks off, I returned to blogging.

Lots more time in the allotment, I found it really therapeutic to be outdoors, working in the ground and growing lots of amazing fruits and veggies, I was struggling mentally and this helped me a lot. I was also struggling with my hernias that were getting larger, more painful and a lot more difficult to cope with.

 

sam cleasby chicken keeping allotments kiveton sheffield

 

September

In September, I celebrated my 3 year no coloniversary! Three years since I had my colon removed and my first ostomy formed.  It was also my son’s 16th birthday which was brilliant!

I went and did some work for Good Morning Britain which was super exciting! I went around the London underground with a Transport for London badge for people with invisible disabilities to see if people would offer me a seat whilst they did some secret filming! Lots of fun!!

recreating old family photos

Then at the end of September after weeks of terrible pain and struggles to cope, I ended up in A&E with my hernias.  I suddenly got agonising pain in the stomach and my hernia in my belly button got stuck through my tummy.  After 2 days in hospital, I was taken in for a 5 1/2 hour surgery that opened me up and reconstructed the walls of my stomach, moved muscles and added pig skin mesh and medical mesh to fix the holes and damage to my abdomen.  I was devastated to have more surgery and the recovery was extremely painful and difficult.  But I was going to have to cope as October was meant to be the month of our big trip to India!

 

October

I had no idea if I would be well enough to travel to India, we had booked everything and the thought of cancelling and losing so much money was scary, but more upsetting was that the trip was to celebrate the life of my Grandpa and to spread his ashes.  I decided that I would do everything I could to go.

So THREE WEEKS after surgery, I went to India.

Even now, I can’t believe I did it.  I was in lots of pain for the whole trip, had to use a wheelchair for the first two weeks and struggled with my new ostomy in the heat.  It was probably the hardest three weeks I have faced for a long time, feeling absolutely terrible but also having the enormous pressure of wanting Timm, my mum and the kids to have a great time.  I desperately didn’t want to spoil it for anyone else.

Even though it was so hard, it was also an amazing time and I am glad we went. Brave or stupid? I am still not entirely sure, but I know that being at the memorial football match for my grandpa with 24 family members and seeing his ashes being spread on the football pitch he had played on 60 years ago was a beautiful and special moment that I am so glad I made it to.

india taj mahal agra in a wheelchair

I also enjoyed the absolute honour of becoming a Community Champion for Crohns and Colitis UK, they say:

“We are honoured to recognise several dedicated supporters as Community Champions, because of their dedication, passion and exceptional efforts. Community Champions do incredible work across the UK, they are campaigning to raise awareness in the media, striving to resolve stigma associated with bowel conditions, raising money that funds research, support lines and much more as well as volunteering to support their local community.”

sam cleasby crohns and colitis uk community champion

 

November

We were in India till mid November travelling to Delhi, Goa and Mizoram and we had the most wonderful time, it really was a trip of a lifetime!  I struggled with my health but we managed to muddle through.  In Goa, my stoma retracted right back into my body and so my bags wouldn’t stick properly, this was a nightmare as it meant I was leaking everywhere and my skin became so raw and painful.  One afternoon, Timm made a bed for me on the balcony,  I was really sad to be stuck in bed and struggling with bags and so I asked him to help me get settled outside so I would at least have an amazing view…

sam cleasby stoma goa india ostomy heat holidays ileostomy bag

We came home from India to even more exciting news, I had applied for a job with Scope and I was thrilled to get it!  I was a little worried about how I would cope with work and recovery but so far, though it is tough, I am doing well!

I look after the online community for Scope and I am absolutely LOVING it, it is such a great opportunity to offer support to disabled people and their families all over the UK.  I love the work I do with my blog and I just feel that my job at Scope is an extension of this.  It is tough, I am still recovering from the surgeries and I do struggle with fatigue from my illness, I take a lot of medication still and there are times when it is really quite tough to get through the days.  I have to have a nap during my lunch breaks but I think you just do what you need to, to get through your days when you have a chronic illness.  But so far, I love my job and feel so lucky to have this opportunity and to be able to work from home.

December

In December, I have been working hard, dealing with recovery and enjoying family time.  Christmas has been a lovely and quiet time, just the five of us.

Over on my Facebook page, I asked people to share what they would pack to go into hospital for ostomy surgery to help others who are in that position and then shared the results on the blog.  It got such a brilliant response and I am so proud to have such a wonderful bunch of readers and followers!

I also decided to create a 360 photography project about IBD called #MyDailyIBD where I take a photo a day to create a diary of my life with IBD.  I have encouraged others to take part and I hope it will be a lovely way for us all to raise awareness of IBD.

December also was tinged with sadness, a few years ago, I met a man online called Darrell Henry on a jpouch support group and instantly connected with him.  He had cancer and was hilarious, strong willed, inspiring and an all round awesome fella.  We started messaging and became friends through our shared lack of a colon and dark sense of humour and though we never met, he was a big part of my life and taught me so much.

Darrell passed away in December and so I have to dedicate this whole post to him.  Rest in Peace my handsome pal!

darrell henry

 

So there we go! My 2016 in brief… I had to pick just a few things from each month and so I know I have missed so much out but I hope you enjoyed reading through my year.

It has been a shitty year all round really, so many well known faces passing away, Brexit, Trump and personally, it was a really difficult year with two huge surgeries and the subsequent recovery.  I have been in pain pretty much all year, I haven’t had a full night’s sleep for as long as I can remember, I have struggled with my mental health, lost my grandfather, had family problems, lost a friend and generally had a pretty shit time.  I am sick and tired of being sick and tired.

But I have to stay positive and think of the great things that have happened this year too, our holidays, a new home, a new job, brilliantly funny and wonderful nights out with friends, the opportunities I have had to be on TV and radio and so many moments of quiet happiness, little things like date nights with my husband, hugs with the kids, walks with the dogs, my allotment and many more.

So my hopes for 2017? I don’t want to make any resolutions but I am hoping that for the first year in the past 3, that I won’t have to have any surgeries!!

I really hope that the coming year will bring me recovery and health.  And despite everything, hope is one thing that I must keep strong.

 

Happy New Year bad asses, I hope you have a good one!

 

Sam

Why Miriam Margolyes was wrong to judge a book by it’s cover

Miriam Margolyes is the wonderfully outspoken actress from Harry Potter and star of recent TV show The Real Life Marigold Hotel.  She spoke out this week about an incident at Waverley Train Station in Edinburgh, when a young man refused to give up his seat for her.

Miriam told the Daily Mail that she has arthritis and was carrying a backpack when she looked for a seat on the station platform, when a man refused to give up his seat and pointed to one further down the platform, she emptied a water bottle over his head.

‘I was really p****d off. It’s really hard being old — it’s horrible. I was in pain. I was really hurting,’ she says today. ‘So I just thought, ‘F*** you!’ and I took my bottle of water out, took off the lid and poured it over his head.’

Now, as much as I do like Miriam, and I think that if you are able, you should give up your seat to those who may need it more than you.  Older people, people with mobility issues, pregnant women, all those who may need a bit of assistance, but you can’t judge a book by it’s cover.

sam cleasby tut disabled toilets more than meets the eye

Last week I was at the coast, it was only 4 or 5 weeks after surgery and it was a scary feat to be away from home.  I was away with art group Responsible Fishing UK for a project with Coastival, I wrote a story that was transformed into an art installation, my words were carved into tubes and became floating lights in a story trail.  I am really proud to be part of this and though I wasn’t able to be part of the installation, I wanted to be there to see the finished product.

responsible fishing uk a light to guide

Anyway, we stayed in a big holiday home with our friends who looked after me and were just brilliant, one afternoon my friend had to nip to a shopping centre and I wanted to get out of the house.  It was good to just be outside for a short while, after 10-15 minutes though, I was struggling.  My stomach was sore and my back aching, so I went to sit on a bench whilst my pal finished her shopping.

As I sat, an old man came and sat next to me, then another.  Then I saw an old lady shuffling towards the bench and thought ‘oh crap’.  I knew it would be expected of me to stand and give up my seat and as she approached, I was panicking wondering how to deal with this.  I knew that though inside I was in pain and I was starting to worry about a bag leak, on the outside I looked like a young, healthy, able bodied person.

She got closer and the two men looked to me, I hesitated, embarrassed and then one man stood up to give his seat.  I could feel the judgement and so I bit the bullet and spoke up.

‘I’m ever so sorry for not giving my seat, only I’m recently out of surgery and I really need to sit right now’

All three were polite and kind and told me not to worry about it and to rest my legs and I have to say I was relieved, yet I was a bit embarrassed that I had to explain my personal medical issues.

more than meets the eye sam cleasby sheffield so bad ass

So when I read this story, I couldn’t help but relate my own experience to it.  The Daily Mail describe Miriam as “a 4ft 11in, 74-year-old — her bosom alone is the size of small hay bale — with a knapsack on her back, a wheelie case in one hand and hobbling in pain from an arthritic knee (she’s having a knee operation in May).” and only says the man was young and on his phone.

It is easy to assume the worst, but the reality is that we have no idea of his circumstances, perhaps he had his own, less visible, health issues.  Perhaps he’d had surgery, perhaps he had back issues, perhaps he had one leg! Maybe he had anxiety problems or autism.  We just don’t know and as the More Than Meets The Eye campaign shouts about, there are so many invisible or hard to see medical issues that millions of people deal with every day.

Does Miriam have the right to be pissed off that she doesn’t get a seat? Yes, if that’s how she feels.  But does she have the right to judge all those around her who aren’t 4’11 arthritic pensioners, does she fuck…