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So I have something to tell you…

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I have been quite open on here about the ups and downs of this journey of mine, through meds, hospital stays, 5 surgeries, months of recovery and the multitude of things going wrong, I have documented the lot.  There are times when I feel positive and upbeat and other times when I feel thoroughly defeated.

You may have noticed that I didn’t blog for a good few months this year (from April to July) which is the longest time I have abandoned this place for.  The reason for that time away is that I am really struggling mentally.  And after months of hiding my feelings and plastering a smile on my face, I decided to start seeing a counsellor a few weeks ago.

I haven’t told many people this, I suppose I just wanted to keep it for me for a while, to try it out and see how I felt about it.  I suppose there is a small part of me that is a little embarrassed, I am not from a place or family that talks about needing support or showing any vulnerability or weakness.  I know this is bullshit, but I am fast discovering just how much crap my upbringing and environment has subconsciously taught me.

I don’t want to go into it too much, it is very much a private thing between me and her.  But I do want to say that just a month in, and I am feeling the benefit of it week on week.  Don’t get me wrong, it is HARD.  We are talking about things that hurt. A lot.  We are talking about things that bring a lump to my throat to just think about, let alone say them in front of another human.  But it is helping me to start to learn about myself, to pull things apart and think about them in a new way.

It is helping me to not only understand myself, but to start to think about the people in my life and how they are feeling and how their actions have affected me.

sam cleasby blogger mental health counsellor sheffield

It’s weird, I am quite controlled, yet when I am there, things come out of my mouth that I didn’t even know I wanted to say, that I hadn’t even thought about.  And her responses sometimes floor me.

I struggled with the very idea of counselling because I struggle with people who make excuses for their own behaviour (she has made me realise that growing up with alcoholics and drug addicts will do that to a person!). And so there is a big part of me that feels like I shouldn’t be there complaining, that I should just figure my shit out and deal with it myself.

But another part of me has realised that figuring my shit out requires the input of a very clever and compassionate therapist at this point in my life. And that’s OK.

I thought about whether to share this with you or not, and I came to the conclusion that if I do this, I do it honestly. I don’t want someone reading this blog and only seeing the Mary Poppins, sweetness and light, positive rainbow side of me and thinking ‘oh. why do I feel so shit and she is ok?’ I want to share the highs, and the lows.

I want to tell you all, and myself, that even when things are awful, even when you want to hide in bed or run away, when you feel like you are a burden to those around you, when you wonder what the point in carrying on is, when the world feels like a dark an scary place; you aren’t alone, I am here and I understand.

Love Sam xx

 

I have taken the leap

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After quite a few months of just not feeling myself, I have taken the leap and made an appointment with my GP to discuss my emotional health. And man, it was scary. 

I always think I’m quite tough. Not much scares me any more as I have been through hell, so what else could frighten me?  I’ve been cut open, had bits removed, added, joined up. I’m scarred beyond belief and have an ostomy bag. This wasn’t my plan for the first half of my 30s but it’s happened and I’ve come through it. 

But it turns out that discussing my mental health is fucking terrifying. 

Since this last op, I’ve just not felt myself.  I’m anxious and weepy, I feel ever so sad sometimes. I feel myself building bigger and bigger barriers between myself and my friends and family and something has to change. 

Guilt is at the heart of a lot of this. I feel guilty for being ill, I feel guilty for not being enough for others.  I feel guilty that I’m not coping very well. 

I just feel like the past few years have been one thing after another and I’ve had to just react to each of these things. I haven’t had time to actually process them.  And now it’s all catching up on me. 

I can bear my physical scars, show them to the world. But my emotional ones hold a lot more fear in them. 

  
My scars show my battles with IBD.  My emotional scars are the wounds of my heart, my pride, my soul.  

They hurt just as much as the physical wounds and I need to give myself time and opportunity to heal my head as much as my body. 

So here I am. Taking a leap. Allowing my hurt to be spoken of. 

I’m Sam and I need help. 

And I am going to gift myself the time and space to seek help and feel myself again. 
Xxx 

It’s my birthday!

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Today I turn 35… A day for celebrations. So why have I been up since 4am with anxiety crushing my chest?

I don’t know, I feel like the trauma of the past few years is catching up with me. I wake with my heart pounding, my hand on my bag, sweating, dry mouthed.  Panic and anxiety flood my mind and body. 

I get up and check on the kids, I check on the husband and the dogs. I check that phone chargers are switched off and unplugged (I have a fear of fires starting from chargers). I check my bag for leaks and try and settle back down. 

This happens often and then I wonder why I’m so exhausted in the day. I had blood tests recently to check my levels to see why I’m quite so tired.  Perhaps it’s less a physical thing and more a mental one. 

Sometimes I sit in awe of everything that’s happened in the past few years, it often all feels like a bad dream. Perhaps I’ll wake up and not be ill, not have a bag.  It catches me off guard when I think about just how broken my body is, when did this sneak up on me? 

  
I think it’s the permenance of it, this is it forever. There’s no ‘getting better’ from this, it’s my life now and the treatment that’s saved me is the cross I have to bear. Mixed emotions swamp me, I know I should be grateful for all the wonderful treatment I’ve received on the NHS, grateful that I’m alive and still standing! Yet sometimes I just feel sorry for myself.  

Why me? 

As I’ve said before, I’m pretty rubbish at sharing my feeling in real life.  I have awesome friends around me but I just done have the words to share my pain.  I mean, I do, because I write them here but they really stick in my throat when I try and speak out loud. 

I need to accept that it’s ok for me to feel bad about things.  I struggle massively with not being ok. I want everything to be peachy keen, rainbows, sparkles and mega lols and I feel guilty if I don’t feel positive. 

I’ve been thinking about counselling. Perhaps I need to talk to someone about what I’ve been through.  Perhaps my 35th year will be the one that sorts my head out as well as my body. 

Till then I’ll celebrate the things I’m lucky with. My amazing friends, my wonderful husband and the best kids ever. The fact that I’m reaching 35 when it all could have ended so badly. The fact that my bag saved my life. 

Happy Birthday me. 
Sam xx 

When you can’t hold it…

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I have seen two stories today about different situations where institutions have put rules in place regarding toilet breaks and it really got me thinking about how distressing this can be for those who can’t just hold it.

The first was regarding comedian Frankie Boyle and how his shows have put restrictions on people leaving the auditorium during his 70 minute show.  Security staff at the King’s Theatre in Glasgow were ordered to escort fans to another part of the building until the performance was over if they left to use the bathroom.  According to the Mirror, the general manager James Howarth said “The show is only 70 minutes long so it’s not an unreasonable request.”

The second story was about St Teilo’s Church in Wales High School in Cardiff that sent out text messages telling parents their children must have a doctor’s note if they want to go to the toilet regularly during lessons.  It said: ‘If your child needs to be allowed out of lessons to go to the toilet then please provide a medical note in the next week so they can be issued with a pass.’

public toilet sign

 

Now I understand that disruption of shows or classes can be annoying to others, but as a person who regularly has to use the toilet and can’t always hold it, believe me, it is more annoying to me than anyone else! I have two different view points on the two stories though.

Regarding the show, it is just so disheartening to know that these rules are in place, though it isn’t great to disturb a show, it is sometimes a necessity.  There is nothing that sets more fear into my heart than the idea of being unable to get to a loo in time.  Take off and landing during flights make me sweat because as soon as I hear the words that the toilets are out of bounds, my stomach churns, my guts cramp and my body panics!

Rules like this exclude people with bowel or bladder conditions from these social occasions.  They increase anxiety and add to isolation.  If you struggle with toilet issues and need to go regularly, then it can be very difficult to mentally deal with being out in public and if you cannot access toilets with ease then it can rule out certain events altogether.  The quote from the manager REALLY pissed me off. It IS an unreasonable request to expect some people to not be able to use the loos for over an hour.  Every theatre/comedy/music show I have been to also tend to have huge queues so leaving it as long as possible just isn’t an option when you know you could end up in a 20 minute queue afterwards.

Invisible disability is everywhere and there are many people with needs and issues that can’t be seen easily and these people shouldn’t have to explain to a theatre attendant their complex medical needs.  Places need to be more inclusive not be excluding people based on disability.

The school story initially upset me a lot more.  The idea of kids having toilet access restricted was quite disturbing as children with bowel or bladder issues have a hard enough time as it is let alone having to produce a doctor’s note.  But in reading the story I think it was just a badly worded text with a genuinely caring message at heart.

The school appears to be putting into place a system where those who have genuine medical issues can have the ability to go to the toilet unchallenged as the school will know which kids have a need to go.  It must be very difficult for teachers to know who is really needing to go and who is doing it to waste time/mess about.  I remember when I was at school that a toilet break was often used to go for a wander/grab a drink/raid the chocolate machine/chat to my boyfriend… (Don’t tell on me!!!)

I suppose the problem with this is that some kids may develop symptoms of illness and need to suddenly go often and without a doctors note they may not be believed.  Children, especially teens tend to hide symptoms of what they deem as embarrassing illnesses.  They may have not even told their parents, let alone been to the doctors yet!

ibd blogger office loo toilet ulcerative colitis

 

The other problem is that sometimes it takes a long time for doctors to correctly diagnose these illnesses, I speak to so many people with IBD who were initially fobbed off with a diagnoses’ of everything from piles to anxiety.  Perhaps we just need to trust that some students will sometimes need to go to the toilet more often than others in order to not isolate, embarrass and upset those who have a genuine need.

If you have ever soiled yourself in public you will know that this isn’t a joke.  It is mortifying and can make you feel that you should stay home forever, it can make you feel embarrassed, humiliated and inhuman.  It can make you feel life isn’t worth living.

Are these things worth it to stop some minor disruption to classes and social events?

I think not.

 

Sam

Hello therapist, may I lay on your couch?

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Ohh my little blog, my place of cathartic writing, my diary, my journal of my illness and recovery. Sometimes I forget that when I hit post, it flies out through the ether and into the laptops, tablets and phones of so many. (Currently about 15000 of you a month! WTAF?!!!)

I write for many reasons, one is to raise awareness of crohns and colitis and all the issues that surround them. On that note, today is the start of Crohns and Colitis Awareness Week!

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I want to help others down their IBD path. Being diagnosed with Crohns or Colitis is terrifying, then you have to learn so much, so quickly, you have to make decisions on taking drugs with side effects lists longer than your small intestine, perhaps face surgery and deal with life changing recovery… I’ve trodden this path and if my experience can help just one person, then I am happy.

But I also write for a much more selfish reason. I write to make myself feel better, I would write this blog if not one person read it as it is my release. The way I let out all the swirling feelings inside. My therapy.

So I thought I should thank you all, my therapist readers in countries all over the world!

As I lay on your therapy couch today I need to talk anxiety. My head is spinning at the minute, it is just constantly going, worrying, fretting, overthinking. I’m not sure how to deal with this. As I’ve said before, I tend to cover up when I’m not feeling great with loudness and guffawing. It’s easier to grin and bear it than to open up.

Perhaps I worry that I’m letting people down by not being my normal cheery self, perhaps I worry that it will put people off me, perhaps I worry that people close to me already have so much to deal with, with my poor health that adding a dose of anxiety and sadness onto it will be the straw that breaks the camels back?

And so I turn to my pages here, then embarrassment hits when I know people will read my words. On any post like this, I write never knowing if I will actually hit that post button. That button that screams ‘SHE’S NOT COPING’.

It scares me to put it out there, but it’s important for me to share because I know I’m not alone. And it actually makes me feel better to think that other people are going through tough times and I’m not some loser who can’t tough it out. It IS hard. It’s ok for me to struggle.

I don’t come from a family where weakness is the norm, we are tough, strong, gobby Northern women. It doesn’t come easily to me to have weak moments.  I am naturally quite an upbeat, cheery person and so when I am feeling sad and anxious it is such a shock, it is not something I really know how to deal with.

Though I strive to be a kind person, and I really do, I think kindness is the best quality any person can have, sometimes I slip into an easy, defensive mode.  The mode that means my friends think I am so tough.  But really inside, sometimes I just feel anything but tough.

I’m sorry this is such a down post.  I am trying really hard to work through my feelings and anxiety.  The problem is, when you don’t talk, don’t ask for help, people don’t know how to respond to you.  I don’t know if I CAN talk about it, the words stick in my throat.  I find it easier to type…

So there we go, thank you for today’s therapy session!

If you are struggling too, please don’t be a buffoon like me, talk, talk, talk… Speak to people around you, try and be open.  If you can’t do it in person, or have no one to talk to, you can always contact me.  We can have a virtual cuddle and as much as I’m not good at voicing my own anxieties, I am a very good listener and give some decent advice! If only I could take it myself!!

 

Much Love

 

Sam xxx

When the dark cloud hits…

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I don’t suffer with depression.  People I know who do, have educated me about the soul crushing symptoms of true depression and so I don’t want you to be under any impression that what I’m talking about here is the same as that.  But sometimes, without warning, I get this dark cloud that floats along and then sits heavily on my shoulders.  It is like a deep sadness and it is hard to shake.

My blog is about positivity and finding the silver lining in all situations, and I do genuinely believe in that.  I practice what I preach, I try to deal with the hand dealt to me in the best way I can.  But sometimes that makes it difficult for me to admit when this cloud approaches.

Things aren’t bad at the moment in my life,  I was on the radio and had a brilliant interview about Ulcerative Colitis and ostomies.  I had some fantastic feedback from this and have been invited back to be on Radio Sheffield again soon.  I went to London at the weekend to do a talk at the Sunday Assembly about IBD and body image.  I have a few more events coming up and I’m off to the gorgeous Clumber Park Spa this week to review it, a day of relaxation is just what I need right now!

So why is it that I feel like I could cry at the drop of a hat? Why do I feel so sad and low?

I think most people have the odd ‘off day’ and I am sure that is all this is.  I have had a really hard year and have had to overcome a lot and so I accept that I will have times when it is all a little overwhelming.  I think it is really important to learn to accept this, to be ok with having moments where I want to build a duvet fort and hide from the world.

I am very good at painting a smile on, this is both a good thing and also a curse.  Despite how easy I find it to share my feelings through writing words, I sometimes struggle to speak those words to the people closest to me.  I find it easier to make a joke and act the fool.

But sometimes the weight of that painted smile becomes a heavy cross to bear.  The feelings of sadness, guilt and anxiety swirl away just under the surface.  I feel overwhelmed.

My pouch is still playing up, new meds made me into a zombie and so it is back to the drawing board.  Oh, and my hernia is back.  The only treatment is surgery which I just can’t face right now so I am going to just have to deal with it till it gets too painful.

I feel like I have been through so much this year and I hoped that I would feel better by now, I was told it was a long recovery period from the pouch surgery (18 months to 2 years) but I thought I would be doing ok.  Instead I feel like I have taken a big leap backwards.  I am sick and tired of being sick and tired.

Timm is, as ever, being awesome.  He tells me to rest and leaves me to sleep in whilst he gets up with the kids and sorts them for school.  He then goes and does a full days work before heading home to look after kids and me… I can’t help but feel sorry for him.  He deserves better.

When I say this, he gives me a hug, then tells me to stop being a dickhead.

So there it is.  My whinge is out.

I am trying hard for normal service to resume, so please bear with me.

 

 

Love Sam xxxx