Happy Valentines Day

I know lots of people don’t like Valentines Day, feeling it’s all a bit commercial or crappy if you aren’t in a relationship.

I could take it or leave it, I tell that husband of mine I love him every day and don’t need one particular day. But I also love a bit of joy and I like seeing so many posts full of romance and slush!

It also feels like a good day to big up my Cleasby, we’ve been together for 20 years now and our relationship has just got better and better over that time.

The past 6 years have properly kicked our arse, 7 surgeries and my reliance on him has just got more and more. My body has changed beyond recognition, losing my intestine and butt has been tough on my self esteem and has had a big effect on us.

But it’s also taught us about honesty, openness and talking about everything, especially the hard stuff.

There have been really tough conversations, those laying it all on the table talks, tears, hurt, anger, frustration but in the end, love.

Illness, surgeries, these life changing events can end relationships, it can all get too much and pull people apart. I feel extremely lucky that we have managed to draw together and find a new way to make our relationship work through the toughest of times.

Today we’ve had meetings, work and lots of stuff to do, but we’ve had dinner together at home and hung out watching tv and that’s the kind of valentines we like!

I know I’m so lucky to have this dude in my life for the past twenty years. Here’s to the next 20!

Happy Valentines Day to you all!

❤️

Sam xx

Supporting Someone With IBD: A Guide For Friends and Family

“Finding out that someone you care about has Crohn’s or Colitis is a shock. You might be feeling anxious about what comes next and how their life will be affected. Things will change – but the support of friends and family can make a huge difference in helping them live well with their condition.”

Crohn’s and Colitis UK have produced some information on how you can support someone with IBD and you might just recognise the couple on the guide!

crohns and colitis uk supporting someone with IBD

crohns and colitis uk supporting someone with IBD

I just want to dance

It’s been a busy week, work, radio show, hospital visits and finding out that my next surgery is going to be a tad more complex than I originally thought. I wrote about it in my last blog, so I won’t bore you again but basically, it is going to be a long op with an even longer recovery.

I am really struggling with pain, I take a lot of painkillers every day, spend a lot of time laid in bed and pretty much have a hot water bottle strapped to me at all times. There are a lot of things worrying me right now, but the main thing that is upsetting me is that I just want to dance.

I know this might sound stupid, I should be concerned about the upcoming op rather than having a boogie, but honestly, I’d give anything to just be able to have a full on, throwing myself about the room, bounce up and down, shake what your momma gave you dance. I’m a terrible dancer, but I love it, I enjoy having a good old boogie and I miss it!

I’m so fed up of the limitations of my body, the pain is constant, gnawing and just being stood upright for more than 10 minutes is really painful. I want to walk my dogs, I want to ride a bike, I want to go swimming, go to yoga, work in the allotment, but most of all I want to dance. I don’t care if it is in a club or a bar or just in my kitchen, I want to dance my heart out without feeling like my insides are going to burst out of my belly.

There are a lot of struggles when you have a chronic illness, the ulcerative colitis was debilitating for years and then I thought the ileostomy would be the answer to all my prayers. It has just been one thing after the other, going through j-pouch surgery and then 18 months of chronic pouchitis till I had to have it removed along with my butt hole was such a challenge. Now the past few years, my life is just taken over by the hernias and the pain.

Since September last year, when I got my newest parastomal hernia, life has been getting progressively harder. I now have two hernias, the parastomal one is huge and it’s a constant dragging pain, the smaller one is actually a lot less painful most of the time but then every now and then (if I cough, sneeze, strain) the hernia comes out and it’s like being stabbed.

sam cleasby sheffield blogger chronic illness

I can barely walk most days, sometimes I feel much better and I am able to walk a little and get out of bed but I know those days are followed by worse pain. This week, after hearing about how complex the operation is going to be and that I have a 75% chance of complications, I just thought ‘fuck it’. I have pushed myself and been out with friends for three days in a row, painful, exhausting and fuelled by painkillers, but I just wanted a little bit of normal, a bit of fun, just some time away from my bed.

I’m trying to not let this all get me too down. I mean, I am accepting it and being reasonable, but I have come off my antidepressants and so I am very aware of my mental health right now and monitoring if my sadness is within ‘normal’ ranges, if that makes sense. And so I can’t let myself sink, I need to keep my chin up and be accepting of my life but also keep positive for the future.

There are many things that keep me going when things are tough, my family, friends, work. But the one thing I keep thinking is that I am going to kick ass at this recovery, I’m going to follow the rules, rest, exercise, take time off work, no lifting etc blah blah blah and then this WILL BE a successful op, I will be totally sorted and by Christmas 2019 I will be dancing, arms in the air, ass shaking, wiggling hips and dancing my heart out and it will be all ok.

Because I have to try and think positively, even if inside I am terrified that things will go wrong and pissed off that this is what my life is like. I need to focus on something, and to be honest, there’s not much point in thinking too big, honestly, I will just be happy when I can dance again.

What is the one thing that if I could wave a magic wand right now, you would be able to do?

Sam xx

Good news and bad

Last week I had some good news from the gynae hospital.  I’ve had a large cyst on my ovary that been monitored for a few months, along with some worrying blood test results, there was a concern about ovarian cancer.

I’ve been given the all clear, the cyst had gone down, the blood test results a lot closer to normal so it’s all great news!

Then this week I met with my new surgeon Mr Adams, I’ve been referred to him by Mr Brown as he deals with more complex abdominal cases so Timm and I went to see him yesterday.

We looked at my scans and he went through my history and said that he would operate. This I was expecting, I have one large parastomal hernia and one hernia in my old stoma site so I knew that surgery was definitely on the cards.

What I wasn’t expecting was just how complicated and high risk it was going to be. Because of having so many surgeries, the multiple hernias and the sheer size of the parastomal hernia, he says it is going to be very complex and difficult.

I have a 75% chance of complications, this is really frightening.

Ill need a 1-2 week hospital stay and 2-3 months off work recovering.

I was in shock and had a bit of a cry, it’s all just a bit overwhelming and scary right now, I am terrified that I’ve used up all my luck and this is going to be the one where it all goes tits up.

Yesterday was a bit of a blur, I cried a lot, shouted at the sky, said it’s not fair. It all just feels very real now, and hearing those odds of things going wrong has put the fear in me. Though I can reduce that by 10% by stopping smoking or going onto e-cigarettes so yesterday was my last fag and today I have a big stupid vape thingy!! But needs must!

Today I’m a bit less emotional, certainly less weepy. But deep down I’m just scared.

The thing is that it’s not the surgery itself that scares me the most, it’s the recovery and the fear of more god awful nurses who won’t follow instructions and give me the planned pain relief. The last hospital stay was a nightmare with two of the most uncaring, horrible nurses I’ve ever met who left me in agony for over an hour after my epidural was switched off (you can read about it here.)

Whenever I think about surgery, it’s this moment I’m taken back to, this feeling of panic, pain and the complete free fall of no control and I panic. My chest tightens, I can’t catch my breath, my head spins and I feel like I’m right back there. I’m so scared!

And so the thought of having 2 weeks in hospital, potential complications, a big old cut in my belly, potentially another stoma move and then months of not being able to work, of needing so much rest, it’s just too much.

Because I had two surgeries last year (and a handy mental breakdown) I have no more paid sick leave left at work and so although they are really supportive, financially it’s a worry.

Timm says that whatever we need to do, we will, that he’ll look after me, to forget the money, that we will get through it together, that he’ll be with me every step and won’t leave hospital till he knows pain relief is sorted.

I also know we have some wonderful friends who will be right by our side and so that makes me smile.

But all in all, this is a bad time, I paste the smile on but underneath I’m absolutely done in, scared, weepy and upset.

Will update when I’m feeling brighter

✌🏽& ❤️

Sam xx