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Talking Health

I had a lovely talk with such a nice dietician lately. She was so understanding of Crohns Disease and seemed to really have incredible knowledge of IBD. She works very closely with the IBD team at Exeter so it was nice. But what I wanted to talk about here was an organisation called 'Talking Health Taking Action' which was founded in 2011. Jane and Jean have worked together for 20 years and started Talking Health to help provide people with chronic illnesses with self-management support.  "We work with providers across the NHS, social services, public health and within the voluntary and community sector. We specialise in providing support to organisations seeking to develop programmes that enable people living with long term conditions to develop self-management knowledge, confidence and skills."  She offered me this incredible support and was surprised when my first reaction was 'that sounds great, how can I sign up to help other people?'. Whilst so many peop...
Recent posts

for you, mom

After being diagnosed with Behcet Syndrome, my mom handled the news better than anyone else probably ever could. She didn't let it effect her life and instead continued to be one of the most positive and uplifting person I've ever known.  Side effects from tablets have her kidney failure. I remember being in primary school and her being yellow in a hospital bed and just being told she was poorly. Not long after that we're sorting out a cupboard in the house and watching a VHS video of someone explaining dialysis and how to work the machine etc. As young children we would help our mom up off the floor and we would help with so much around the house to help out.  Years of steroids definitely took its toll, especially towards the end of her life. Her bones would break by just walking. She had a heart attack one year which she was given an inhaler for, one day she used her inhaler and her fifth invertebrate snapped with mere millimetres of bone protecting her central nervous sy...

Mental Health Awareness Week 2019

So this week is mental health awareness week - so I thought I'd share my journey: I started suffering the age of sixteen. I started showing symptoms of crohns disease from the age of four; but I wasn't diagnosed until almost eighteen. I was in a room with a gastroenterologist consultant who said I was lying for attention. I was lay naked whilst she checked my body for signs of self harm and asking me questions like 'do you starve yourself to look good?', 'do you get the least amount of attention in your house?', 'have you ever been sexually abused', the list went on. I was crying and begging her to believe there was something wrong with me and I'm not an attention seeker. She agreed to one final colonoscopy as long as I agreed to see a psychiatrist 'when it comes back clear'. As strange as it may seem - being diagnosed the day of that colonoscopy (which was performed by a different consultant) was one of the happiest moments of my life. It ...

I don't know how you do it

For a while now that's what I've heard - 'I don't know how you do it' Truth is: I don't know myself. I started a new job in February, I work around 25 hours a week and I do love it. I've gone from housebound, scared to leave the house, no friends close by, no adult conversation and just feeling all round lonely and like my son deserves better. Throughout working hard I've been having tests done at Bristol. These are just the conditions wrong with my bowel: Colonic inertia Bile salt malabsorption Crohns disease Hypersensitive rectum I've prolapsed twice whilst working. Twice my intestines have decided to pop out and say hi! I've drove myself to the hospital, had gas and air to have it put back in, and returned to work the day after. I'm exhausted, I'm sore, I'm at the end of my tether of this happening. But at the same time I'm proud. Proud of pushing through, proud of not giving up, and proud for not falling apart. Only...

Let us moan

It's so, so, difficult having a chronic illness - make that multiple and let's call that a shitty time. It bugs me when 'healthy' people moan that I moan on my Facebook page. But, to me, it's so much more than that. It's saying I'm supposed to be happy that I've been dealt tough cards and that I'm supposed to be okay that I have these illnesses. But I'm not okay, far from it. Us with chronic illnesse(s) don't get out much. We lose friends easily from not having a social life, there's me who is a single parent (and as much as I tell my son a lot of things- I'll never admit to how hard it is to him) and there's also the many other sufferers who are currently in hospital. Facebook is an outlet. Many people post many different things: selling things, weight loss, children, gym progress, the list goes on. So why can't people post about how rubbish they feel? 'Healthy' people catch a bug or get a cold an...

Burnt toast

The moment my mom was sent to hospital I knew that was it. She was so poorly, confused, skin and bone and needed a machine to help her breathe. Living so far away was difficult to see her but I had to. I had to say goodbye whilst she still knew who I was. Her last words to me were 'I know you're talking to me like this because you think I'm going to die. I'm not going anywhere'. I didn't sleep for the whole time she was in there. I kept my phone on loud 24/7. She accidentally called me once saying how well she was and she'll be home soon. I was so exhausted that I fell asleep and missed 40+ text messages and 30+ missed calls whilst my phone was on loud. I woke up, looked at my phone and as my sister called I answered it and said 'she's gone isn't she?' And she had. I put the phone down, knocked on my next door neighbours door and as soon as she opened I just shouted that my mom died. I cried for for like 5 minutes and that was it. The funera...

Dear Future Boyfriend

Dear Future Boyfriend, I'm sorry that I'm not like any 'normal' girl I'm sorry that I'm in pain most days I'm sorry that we might need to cancel things last minute I'm sorry that we might be late eating at your favourite restaurant I'm sorry if I moan I'm sorry if some days I take it out on you I'm sorry if some days I'm needy and need hugs I'm sorry if sometimes you visit and my house is a mess - I just haven't been able to clean it I'm sorry my weight goes up and down so my figure might not be what you enjoy I'm sorry if what you get isn't what you expect But what I give in return is so much more than you could imagine Not only is it just me but I have an amazing son too I have a massive heart that has so much love to give When you're old and your joints are aching - who could understand more than someone who's already aching? There's more to me than crohns disease or fibromyalgia or any ot...