Tag Archive for: emotions

Well, that didn’t take long…

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So, I’m back. My ‘break’ lasted 12 days.

Honestly, I’m glad of the downtime.  I’m still not great mentally and emotionally, lots of things in my life are still totally up on the air, but I realised that staying away from this place wasn’t actually making me feel any better.  If anything I felt worse.

This is my sanctuary, my place to verbally vomit all the stuff in my head out into the world.  When I don’t have the ability to share here, my head feels very, very full.

Things aren’t great.  I’m still struggling health wise and waiting for my surgery date to have my Jpouch removed and a permenant ostomy.  I’m going to the loo a lot, having accidents and lots of crampy pains.  I know the surgery is the right way forward but I’m terrified. It’s a big op and I’m scared about all of it, not least that it’s just so permenant.

At home, we are still in the midst of a banking/mortgage/house stress nightmare!  I won’t go into it except to say that getting a mortgage when you’re both self employed is more complex than the Krypton Factor and Mastermind put together.  This is just leaving me feeling really anxious and unsettled.

Finally, the book thing. Well, I had a bit of a breakdown over that. I felt really disheartened, like I’d been found out as a fraud and that I couldn’t really write.  I felt useless and silly.  I felt that I needed to stop being stupid and fanciful and just get a proper job.  I couldn’t face writing anything, every word on paper made me shrink back and cringe.  That old demon on my shoulder whispered that I was stupid and foolish and that everyone was laughing at me.

The past couple of weeks have been hard.  There’s been times that I just couldn’t breathe, I felt so overwhelmed with sadness and fear.  I still don’t feel great.  I feel like I should get a fucking Oscar for the show I’ve put on for family and friends.  There were times when outwardly I was laughing that I felt like shaking them and screaming “THIS IS ALL AN ACT!!! IM DROWNING!!!”

But really, I think it’s actually done me good to force myself to get out and see people, to go to parties and have friends over. Because when I’m out, I can’t let the sadness take hold, I have to jolly myself on and that, if nothing else, is a lovely distraction.

Every time I have made myself be sociable, no matter how much I dreaded it beforehand, I felt a million times better after.  Every physical connection to others has benefited me mentally. And that’s something to take away, I think, that it’s easy to want to hide and weep when you’re feeling down, but making yourself see your favourite people, even if you don’t talk about how you’re feeling, is good for the soul.

I read all your kind messages on my Facebook page and Twitter and they meant a lot. Thank you and sorry for not replying to you all.

There was one message that caught my eye in particular.  It was from my friend Curtis Woodhouse, Curtis was a professional footballer and then he decided that he wanted to be a boxer.  He was mocked by so many who said that he would never make it.  He kept on going despite all that and he became the British Light Welterweight champion!  He never gives up and so his message made me think that I needed to be a little more like him and keep going.

curtis woodhouse

“Sam, just a quick message, an author called Donald McRae wrote a book called Dark Trade, it got knocked back by every publisher that he approached, he believed in the book so kept going with it, finally it got picked up, I think it was about 15 years ago, it’s still selling now, Its one of the best selling sports books ever, Don has won award after award for his writing, he’s the best of the best, go online and read up on the book and a bit about Don, might inspire you to carry on or it might not, you can’t just give up because publishers don’t think the book will sell, if you give up on it why shouldn’t everybody else?

Suck it up, still got a few more rounds of fighting left in you x”

curtis woodhouse sam cleasby

And so here I am back on the blog.  Because (and don’t tell him this, because he’ll get ever such a big head) perhaps Curtis is right, if I give up on myself, why shouldn’t everyone else?

This girl may be a little crushed, a little damaged and a little sad right now, but she definitely has a few more rounds of fighting left in her.

 

Sam xxx

I think I need a break…

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I started this blog two and a half years ago and I have loved every second.  Starting from a humble desire to share my hospital visits and explain my illness to family and friends, it has seen me document every minute of my journey through ulcerative colitis, three surgeries, the loss of my large intestine, one stoma, two hernias and one Jpouch. As well as all the emotions that come with these huge, life altering events.

Today I sit here, awaiting my fourth surgery in two years and it’s a biggy.  They’re going to remove my Jpouch, form a permanent stoma and get rid of my bottom. They’re also going to attempt to sort out all the gynae problems that have been caused by all the surgery.  It’s a long and complicated surgery and I am very anxious about it.

I’m scared, angry and upset that this is happening. I’m so fed up of my body being this broken thing that affects everything. I’m tired of being a burden to those around me.  I’m sick and tired of being sick and tired.

I also sit here feeling disheartened and disappointed in myself. I’ve spent the last 9 months working with an agent and many publishers trying to get my book about IBD, ostomies, disability and how to deal with the shit that life throws at you out to the public.  And yesterday I got my last ‘no’ from the 12 publishers we have approached.  And I’m crying.

I’ve worked really hard because all I’ve ever wanted was to use the massively shite life I’ve been given to help others. I love my blog.  I really do. Every message I receive makes me believe in myself a little more. Each one reminds me that as I sit tapping away in my bedroom, that millions of people in the uk and around the world are struggling too, and that my words might just help a tiny bit.

You can’t imagine how much that means.

But right now, between the stress, anxiety and sheer terror of facing this next operation and the utter heart breaking disappointment of not getting published, I think I need a break. We are dealing with a complicated house move at the minute too, which isn’t helping.  We’re hoping to move house but dealing with banks and mortgages when you are both self employed is so complicated and stressful and on top of everything else, I just feel so unsettled and without a solid base.

I feel like a failure. In so many ways. I feel my body is failing me. And I feel I’m failing my family and this wonderful audience by not reaching this goal of the book.  I struggle with the idea that I am ever good enough, the chip on my shoulder is that I’m not smart enough, that I don’t have a ‘proper’ job and that I just don’t have the ability.  I know that books get turned down every single day and that I am nothing special in that way, but the idea that I have wasted all these months hurts.

I feel so low that I can’t offer even a tiny glimmer of hope to readers at the minute.  I feel I’m in this dark place that won’t allow me to say something helpful, something inspirational, something positive.

And so I’m taking a little break from the blog and social media, I always think that if you’ve nothing nice to say, it is usually better to shut up.

My family put up with a lot from me, my illness, my inability to work, my emotions. I feel right now, I have very little to offer and what I do have, needs to be focused on them.

I’m sure I’ll be back. But for right now, can I thank every one of you who has read this blog, followed me on social media, messaged me, spoke to me, met me.

I hope you all have the merriest of Christmases and I hope to see you in the new year.
Sam x

Dear Santa,

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Hey there big man, I thought I’d better jot down a quick note to say hi.  It’s that time of year again so I know your inundated but here’s what I’d like for Christmas.

My first wish was going to be for me to have no surgeries in 2016, but this damn illness of mine has scuppered that already and I’m going in January for a biggie!

They’re removing my Jpouch and creating a permanent ostomy. Some people might wish for Barbies at chrimbo, me? I’m getting a Barbie Butt.

barbie butt permanent ostomy

They’re going to remove everything and give me a new stoma, as well as sorting the other issues caused by all this illness.

It’s a long and complicated surgery, so Father Christmas, can I ask to come through it safely.  I’m scared you see and I just want to know that I’ll be ok and come home to my babies.

It would be nice if I had no other operations next year too, if you can manage it.

I’d also like to ask for an easier time in general. This year has been tough, I’ve been ill a lot and I hate the pressure it puts in my husband and kids.  They deserve a wife and mum who isn’t always ill, tired or in bed.

Whilst you’re at it, keep them healthy, happy and ridiculously weird.  They’re my favourite people in the world and I want to see them smile more.

family days out sheffield

Please let this surgery work. I just want to be well and not exhausted. I don’t think it’s too much to ask at 34 if you could stop me crapping myself.  I just want to be normal.  Not too normal!! I just don’t want to be sick any more.

Better treatments and a cure would be good too! Crohn’s and Colitis UK are doing well but a little festive, magical boost wouldn’t go amiss!

Help me to deal with all the new year is bringing me. I know I’ve had an ostomy before but this is all so permanent and to be honest, I’m scared I’m not going to deal with it very well. A sprinkling of bravery from you would help.

sam cleasby parenting blogger fathers self esteem

Santa, please bring me the courage to keep speaking out. Give me the ability to help others who are struggling and be a beacon of confidence, weirdness and hope for those following my footsteps with shitty chronic illness. Help me to carry on being The Poo Lady with pride.

I may not have been all good this year, but fingers crossed, I am still on the nice list!
Sam xx

Comparison is the thief of joy 

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I read this quote saying ‘comparison is the thief of joy’ and it felt very apt this week as I have fallen into the trap of comparing myself to others.  And my joy feels completely stolen.

Having a chronic illness and facing surgery soon that will give me a ‘bag for life’ in my permenant ostomy is taking it’s toll.  Not only physically, but emotionally too.

I’ve been comparing myself to everyone. To her career, her body, her free spirit, her perfectness.  I look at my sad, broken, scarred body and then look across at other women and feel thoroughly shit. I look at women with careers who are so clever and educated and brilliant and then feel bad about my cobbled together earnings. I see women living the dream, travelling the world, doing what they desire most and then look at my calendar filled with hospital dates.

sam cleasby blogger
Mainly, right now, it’s the body image thing.  And it’s hard for me to admit this as on this blog, I’m all about the positive body image. But this next surgery is so final. It will create an ostomy that can’t be reversed and so I know that for the rest of my life, I will have a bag attached to my stomach that collects poo.

I feel sorry for myself. There, I said it.

And even worse, I feel sorry for Timm. Poor lad really got the short straw when he ended up with me… I told him this during one of my wailing, howling sobs that have taken place this week. He smiled and said he’d got the most colourful and exciting straw. (That’s why we love him!)

It’s so easy to say that we should be positive about our bodies. And I do know I’m lucky to be here, still standing, after years of illness and surgery. But it’s fucking hard to be surrounded by images of ‘perfect’ women and to be imperfect.

On a good day, I can celebrate my ‘imperfections’. My size 16 body that has curves and soft skin, my strong, thick thighs and great rack.

On a bad day, I see fat, I see stretch marks, huge scars, boobs that sit that bit lower than before. And I think about the addition of another ostomy and it makes me cry.

I compare myself to women with ‘perfect’ bodies and make myself miserable.  I sit on this fine line between being terrified that my husband will leave me and the idea that he probably should as he’d be better off without me.

I think about how the man I love most in the whole world is also the man that I cause the most distress.  I worry about how much pressure he is put under every time I don’t feel well. I worry that it’s not fair to him. That he would be happier if I wasn’t here.

Having an illness or disability is fucking hard work.  It brings up so many feelings of pain and burden, shame and embarrassment. And these aren’t things that are easy to talk about.

But talk about them we must.

I don’t write them here to gain sympathy. I  don’t want anyone to feel sorry for me. What I want, is to share these shitty feelings because I don’t think I’m alone in this!  I want to share in the hope that if someone else is struggling too, that they will feel less alone.

sam and timm cleasby

I write because saying those words out loud are painful but the inability to speak them allows them to grow and mutate in your mind till they become bigger than everything else.

I write because I want to give others the courage to talk to their loved ones about how they feel.  To talk about the bad thoughts as well as the good.

It’s ok to speak out. It’s ok to be sad. It’s ok to be angry.

Logically I can dissect my feelings and come up with appropriate answers.  I know when I’m hating on my fat, I need to remember that when I’m feeling good, I love my body. And I really do! I remember that I need to speak positively about my body because it is listening and I know that when my head isn’t such a mess that I believe I’m a motherfucking goddess!!! Seriously, I’m fucking delicious.

I know I don’t need to be a size 8 to be beautiful. I know that my scars are interesting and are there because my life was saved.  I know that my stretch marks are there because my body grew and housed the three best kids in the whole world.

And I know that when my ostomy is back, that it will be there to improve my life.

I’m going to try to stop comparing my life to anyone else’s.  Not one of us is perfect. We’re all facing our own battles and we compare our worst moments with another persons highlights. We’ll never win that one.


Comparison is the thief of joy.  Remember that.
Sam x

The Flu Jab Saga (How I ended up crying snot bubbles in public)

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After years of complex health issues, multiple surgeries, too many medications to name and months in hospital, I thought getting a flu jab would be a simple, fuss free event.  It started when a nurse in hospital clinic asked in passing whether I had had my flu jab this year.  I said I had never had one and she was surprised and asked me to see my GP and arrange one.

My immune system is shagged and I catch everything going.  I caught flu a few years back and spent a week in hospital.  Anyway, I pondered this and asked on my Facebook page whether other people with IBD had  flu jabs.  The answer was a resounding YES! And so I called the GP and asked the receptionist if she could check with a doctor if I should have one.  She said she would check and call back.  She did not call back.

So when I was seeing a GP recently, regarding my pouchitis, I asked her and she thought I should have one.  She said she would check with another doctor and let me know.  Last week I got a phone call from the surgery asking me to attend this week for my flu jab! Result!

sam cleasby blogger

Today I trundled along to the GP surgery for my 10.15am appointment.  As I was called through, the health care assistant looked at the screen and asked why I was having this.  I replied that I have Ulcerative Colitis and have had my colon removed, that I had a rubbish immune system and that it had been recommended by doctors.

She shook her head, stood up and left the room.  She returned and said “Well, you shouldn’t be having this but seeing as you are here, we will do it but only this one time!”  I was quite surprised and asked her why I had been called in my the surgery for this appointment, if I didn’t need the shot?  She said she didn’t know.

I asked if I shouldn’t be having this because it was bad for me, she said I wasn’t on the list of reasons to give the shot.  She appeared a little angry with me but I wanted to be clear on whether I should or shouldn’t have it and so I questioned again why I had been called in for this appointment.  She said it wasn’t the doctors here that had asked for it, I said it was, and tried to explain about seeing the GP.  She rolled her eyes and stood up, asking if I wanted to have the jab or not.

She was quite aggressive.  I said to her “Look, I’m not sure why, but I feel like you’re being a bit weird with me and I am just trying to ask what the confusion is.”

“I am not being weird!” she said loudly.  She was actually being aggressive, but I didn’t want to use the word ‘aggressive’.  She then took the cap off the needle and stood over me, saying “are you having this or not”.  I looked away and said “fine”.

She then span round and walked out, holding the needle.  I was a bit shaken and so stood up and put my coat back on, I didn’t want this woman to inject me with anything!  Then a nurse came back in and asked if I was having the jab.  I explained that the other woman had been quite aggressive and I was just trying to understand what the problem was and whether I was supposed to be having the flu jab or not.  She was friendlier and said that the other woman was a healthcare assistant and trained to just read the basic instructions on the screen.

sam cleasby blogger

I decided to have the shot and took off my coat.  She gave the needle and it was over.  I started to cry and was embarrassed so said “Look, Im sorry if I am being over sensitive”, she said that she would speak to the assistant about it all.  I was really crying as I left the room.  Big snot bubble weeping.

I stood in the reception in floods of tears.  I know I am being over sensitive, I know that usually I wouldn’t be so upset by this, but I am in a delicate place right now, I am just out of hospital and preparing for major surgery and this did bother me.  I felt really silly to be honest that I was so upset but you know that damn straw that breaks the camel’s back? Well this was mine today.

Perhaps this woman was having a bad day, maybe she didn’t know how to deal with the situation, but today really sucked and I walked out of there feeling upset, embarrassed and unsure of whether I should have even had the jab!  Surely part of being a healthcare assistant means dealing with people who may be in sensitive or emotional states.  I obviously annoyed her by questioning why I had been called in but she didn’t once speak kindly or apologise.  She was mean and aggressive and really needs to consider how her actions affect the very people she is meant to be helping.

The NHS recommends this;

The injected flu vaccine is offered free of charge on the NHS to anyone with a serious long-term health condition. That includes these types of illnesses:

This list of conditions isn’t definitive. It’s always an issue of clinical judgement.

Your GP can assess you individually to take into account the risk of flu exacerbating any underlying illness you may have, as well as your risk of serious illness from flu itself.  The vaccine should always be offered in such cases, even if you are not technically in one of the risk groups above.

Don’t be put off by my experience though, if you think you should be having the flu jab, get in touch with your GP.

Sam x

“On a good day”

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I was talking to a friend who has a young baby and we were discussing how tough breastfeeding can be in the early days.  She was saying that she has times of thinking about stopping breastfeeding but had some great wisdom that I have been thinking about recently.

She said “I may stop, but not on a bad day.  I’ll only stop on a good day and then I know it’s the right decision”

I think this is a wonderful mantra and one I am taking on board.  It is all too easy to make snap decisions when times are tough, but better to stop, get through it and make that decision on a good day.  Decisions made on a good day are filled with optimism and hope, they are made with a sense of calm and what is right.

Decisions made in anger, pain, sadness or frustration tend not to be the best for you, if a decision stems from pain, it may lead you to pain.  I know this sounds all a bit airy fairy, but think about it, when you are in a bad mood and try and get things done, how often does it go from bad to worse?  You stub your toe, you drop your tea, you lose your keys…

I am struggling at the minute, my health isn’t great and life is all a bit stressful with work, cars and family and I am having a hard time coping.  I need to make some big decisions but the motto of doing it on a good day is resonating in my ears.

Some decisions are difficult and you may not know the best path to take, but I do think that making those decisions on your better day is a more positive thing than making it on your worst day. 

Sometimes you may make the wrong choice but at least if you decided on a great day of happiness, you can feel it was just one of those things rather than if you made it on a bad day, you can end up feeling guilty and full of self blame. 

So, along with my life motto of “If you can’t sing well, sing loud!”I am adding “do it on a good day”! 

What is your motto? 

Sam x 

I don’t know how to deal with sadness

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“I don’t know how to deal with sadness” These are the words I said to a friend last week and more and more, I feel this is true.  My usual outlook is one of happiness, positivity and general silliness and so when I feel sad, I find it very difficult to know how to cope.

Things are quite tough at the minute, I’m getting over pouchitis and then there’s the whole prolapse thang going on. As I said in my past few posts, this has hit me hard and I just don’t know how to deal with the feelings that have come up.

I smile, I laugh, I joke. And I do mean it. But inside I have this chest thudding anxiety and stress that at times is totally overwhelming.  My head is so full, my thoughts are swirling around and my jaw aches from the constant clenching that crops up when I’m not feeling my best.

I just don’t know how to talk about it out loud, which is frustrating as I am usually good at articulating myself. I find it much easier to write it down but speaking out loud feels like a mountain to climb.

Along with the health problems, things are quite stressful. We’re moving house, I am really busy with work, there are family troubles with close members falling out with me (yet choosing not to explain why!) and my book proposal has gone out to publishers so I am trying to give myself a break and accept that it’s ok to be feeling anxious when you have a lot going on.

As usual I attempt to psycho-analyse myself. I think I have problems with the idea of letting people down. Perhaps I worry that people will walk away and leave me if I become too much trouble. I’m concerned that if I’m a burden, no one will want me. Daddy issues much??!!

I was listening to a podcast yesterday with Adam Buxton and Jon Ronson, a comedian and writer who I think are both brilliant. It surprised me to hear these celebrated and outwardly confident people discussing their anxieties with life, their confidence crises and the struggles they face with dealing with stress.  It kind of made me feel better to think I’m not alone. That actually most of us are dealing with some form of crap in our lives and that we may seem “fine” outwardly (the word “fine” mostly means we’re “not fine”) but inwardly there is a battle with ourselves.

I feel like locking myself away right now, things seem overwhelming and I’m putting stuff off because it all feels too big.  I have a really long list of work things that I need to get done, but I am in full on procrastination mode as I just don’t have the energy or confidence to get started.  But I’m trying hard to fight against this and I’m making myself spend time with great friends.  It’s important to me that I don’t retreat into myself, mainly because I’m scared of what is in there. I’m scared that if I sink in that hole, I may not surface again.

As discussed before on my blog, I do have control issues and I think I’m forcing myself to keep control. I’m making myself go out, see friends, be open, laugh more. I’m making myself trust. Trust that I have the love and support of so many awesome people and I need to respect them by letting them in and believing they will be there for me. In the way that I would (and have) been there for them.  I have made myself go out and see friends or have them over for dinner three times this week, each time I wanted to cancel as I just felt so anxious but I am so glad I did as being around awesome people can only make you feel better!

I heard a quote that said:

those who mind quote

I remember this when I am feeling sad and unable to talk to friends.  “Those who mind, don’t matter, those who matter, don’t mind”  But anxiety isn’t logical is it? Despite knowing that I have some wonderful support around me, the mean, sad voice in my head tells me otherwise.

Chronic illness is a right fucker.  It is never ending and that realisation that this is life long is pretty soul destroying.  I worry that I am a constant burden to the people I love the most, and I worry that they will get fed up of me and want to walk away.  I hate the idea of being a burden and I do worry that the time will come when it all gets too much for others, especially my husband Timm.  He tells me that this won’t happen, that he will always be there for me, but I feel so sad that his life is overtaken by my illness.

My default setting is to try and find the positive and make things better, and so I think I struggle when I have an illogical emotional response and feel sad.  Though I get that it is ok to be stressed out and down in my current circumstances, my usual reaction isn’t working and I can’t shake this sadness.  And that is tough.

Thank you so much to you all for reading and for the lovely messages I have received in the past few weeks.

I don’t find it easy to write this stuff and so I do appreciate your acceptance of me whether I am shiny, giddy Sam or slow, quiet Sam.

xxx

I think I’ve found a topic even I feel shy in talking about… 

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Type. Delete. Type. Delete. Draft. Scrap. Write. Burn laptop and bury remains in the woods.

I’m struggling at the minute with something that even I, Poo Lady Sam, am finding it hard to talk about.  I’ve shared with you all every high and low of my illness journey in the past two years, from shitting myself to surgery, tears to joy, complications and photos of my intestines!

So why is it that I can’t bring myself to talk about what I’m going through right now?

The truth is that I have a vaginal prolapse. My intestines and pouch are pushing against my vaginal wall from the inside and I am struggling with a rectocele.

This is really uncomfortable, makes toilet trips very difficult and hardest of all, I am so desperately embarrassed and sad about it all.

Why this complication feels SO MUCH WORSE than anything to do with my IBD I have no idea.  I suppose it’s because your fanny is so private, that it’s the centre of your womanhood, that the connotations around a less that perfect vag-j-j are humiliating and hurtful.

Perhaps it’s because we are taught to not speak about our genitals? Perhaps I am worried people will laugh? Maybe I’m concerned this is too private to talk about on a blog?

Even as I write this, I am very unsure of whether I’ll hit ‘post’.  But like every other medical ordeal in the past few years, I thought that the act of writing this could be cathartic, whether I share it or not.

When I say the word ‘prolapse’ out loud, I cry.  I get a lump in my throat and tears spring into my eyes. I feel shame burning across my chest and making my cheeks glow fiercely.

I’m in pain. It hurts, this dragging back ache and a psychological terror that everything will fall out.  Going to the loo is stressful, upsetting and scary.

But worse than all of that is this feeling inside like a small black hole that’s slowly absorbing any good feelings. It’s making the colour drain from life, sucking at happiness. I can’t think how I can cope with this setback, I’m scared.  It doesn’t feel fair. I’ve had my bad luck, surely I get a break now?!

I am trying hard to maintain a jolly personality and ensure that from the outside, everything is ok. I can sense, and I think others can too, that it’s all a bit forced, that my laugh doesn’t ring quite true, that my voice is a little too loud and my smile not very genuine.  I just can’t bring myself to admit to others that I am struggling as I don’t want to talk about my broken fanny!

And this is me! Bloody hell I talk about some of the most embarrassing conditions known to man! I go in the newspapers and on TV and talk about my arse!!!! Jeez, it’s ridiculous that this is throwing me so much.  I keep reading this post in my drafts and adding to it, all the while very much doubting my ability to send it out to the whole world.

As I read up on the problem, I see the nhs suggesting that often they will leave the issue if it’s not severe. This upsets me as I wonder what their levels of severity are?  Right now this is all I can think about. It always feels like there’s something in my vagina, it’s painful in my groin, I spend my evenings with a hot water bottle inbetween my legs!! I also can’t use the toilet very well, having a Jpouch means that on a good day, I poo 5 or 6 times and I currently have pouchitis so I’m going a lot more and I’m feeling very poorly.  So this added problem is firstly making me too scared to go and secondly taking so much time.

I don’t want more surgery. I’ve had 3 in 2 years! But I also don’t want to have this become my life.  I’m developing this intense fear of anything to do with inside my knickers!  The idea of using the toilet is too much to bear, so anything else is just a million miles away.

The thing that makes me want to share this post is that I have learnt that it is a complication that many women are dealing with, some due to IBD and the Jpouch and others due to childbirth, illness, cancer etc and I’m fairly confident many of them feel this embarrassment and shame that I’m experiencing.  So maybe I need to be brave for them in the way I stood up and was brave for those with IBD?

I’ve seen my consultant and I’m back on Tuesday for him to do a scope in my pouch and he’ll also see what’s going on in the front too. So hopefully will have more answers soon.

Till then I am trying to freeze and shrink that swirling vortex of doom that is this mental black hole. Trying to paste on a smile, get through each day and not let this sadness take hold.

X

I’m (sheepishly) back

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Hello you lovely lot.

Firstly thank you all so much for all the wonderful messages I received after my last post (Going Dark), it means so much to know that there are so many people thinking of me.  I felt a little embarrassed after hitting send, I worried that I came across mardy and miserable.  But I felt mardy and miserable at the time, so it did the job!

I’m not really feeling much better, I am thoroughly exhausted and still having the aching joints, dry eyes and skin.  The blood tests results didn’t show any remarkable inflammation markers and the Rheumatoid Arthritis test came back negative which is great news as I was really unhappy at the thought of more steroids and a RA diagnosis might have pushed me too far!  I’m having some more tests to check my iron stores, Vit B 12 and Vit D levels as well as thyroid tests and coeliac disease tests.

Someone suggested that perhaps the exhaustion was just part and parcel of life now and the joint pain could be due to all the steroids I’ve had to take in my life.  I know fatigue can play a huge role in the life of IBD patients and this makes me sad.

Emotionally, I suppose I’m not quite right.  I feel ever so sad and quite anxious.  I don’t know how to react to these feelings, people ask me how I’m doing and my instinct is to say ‘fine’.  I smile, I laugh, I join in.  But inside I am struggling.  I don’t really know what else I can say.  I’m trying to get back to business as usual.

Anyway, I just wanted to update you all and thank you for your kindness over the past week.

 

Sam xxx

When you're having a bad day…

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You know those days where everything seems like hard work? When life is getting you down and everything is against you?

I’m sure you do because we all have those days. The ones where you need to crawl into a duvet cocoon and hide from the world, eat a whole tub of Ben and Jerrys and watch weepy films.

When you have a chronic illness these days can occur more often and it can be really hard not to let it all get on top of you and for it to be just too much.

I’ve had a few days like that recently. I’m still recovering from the jpouch surgery, though it was over a year ago, I was told it’s a 2 year recovery period and I’m still learning about my new body. I get days when it’s perfect! And then days where I am on the loo A LOT.

I’ve also been struggling emotionally and I think it’s because I am writing my book. Trawling through the memory banks and writing about my life, the illness, surgeries and my past is bringing up all kind of emotions. I often write with tears streaming down my face as I relive these events in order to share them. Don’t get me wrong, I’m over the moon at writing the book and I’m so excited but it’s really stirring up feelings.

When I’m down in the dumps, everything is tougher, life is heavier and the simplest of tasks seem overwhelming. I begin to doubt myself. That horrid little voice in my head starts to whisper mean things about me and it’s harder and harder to shoo it away.

And then I came across this image. It’s from a letter from Charles Darwin in 1861 to to his friend Charles Lyel. It comes from the American Philosophical Society and I found it on this blog

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“But I am very poorly today and very stupid and hate everybody and everything”

This letter was written two years AFTER he’d published ‘On the Origin of Species’. Two years after writing one of the most important books of our time, inspirational genius and all round game changer Darwin felt as stupid and pissed off as we all do on bad days!

If he were alive now I’m sure he would be in a duvet on the sofa watching Netflix too, watching marathons of Orange is the new black and cry singing to Les Mis.

It was just a great reminder for me that we all have bad days and that its ok to feel rubbish sometimes. That I need to have the bad day and then get back on the metaphorical horse and carry on.

There’s a great quote by Winston Churchill that says “If you’re going through hell, keep going!” I love that and tell myself it on those bad days. Because after a good old sulk, we need to buck up, put on our big girl pants and carry on.

The other option is to stay static in that hell which isn’t going to help anyone, especially yourself.

And so on my bad days, though I’ve learnt to accept them a little more, I will think of Darwin and his Terrible, Horrible, No Good, Very Bad Day and if nothing else it will make me smile to know I am in good company.

Sam xx