When you can’t breathe 

Sorry I’m not posting as much as usual right now. The thing is, I am really struggling. 
Sometimes, I can’t breathe. The tide of panic gets too high and fills my lungs. Sometimes, I feel numb. I can’t connect with people around me. Sometimes, it’s all too much. I want to hide from the world. 
Sometimes, I feel like an actress. I’m playing the role of human woman and making my actor face smile and speak. Inside I’m just watching. 
Watching my bad acting. Recognising when I spoke too loud, acted too jovial. I see the fakeness in my smiles and hear the insincerity in my laughter. 
Being with the kids helps, it makes me pull myself together and try really hard to be me. I don’t want to give them yet another thing to worry about me and so I need to just be ok, be me, be mum. 
I’m a week into meds, and to be honest I’m not feeling any better. If anything, I feel worse. I sway between manic anxiety and numbness and the guilt levels of feeling like this are sky high. 
I’m not sure any of this is making much sense, but I thought that writing it all down might help. I wish I were better at opening up to people, but I find it so difficult.  
It has shocked me to feel like this, after so many years of poor health and surgeries, I am so annoyed that now I am struggling emotionally! It’s really pissed me off, I want to be well. And healthy. And happy. So why am I screwing this up? 
Usually, I can talk sense to myself, I can assess my thoughts and feelings and reason with myself till I feel ok. I give myself therapy and thrash it out till I feel better. But this time, I can’t get to the root of it, I don’t know why I feel like this. So I’m not sure how to make myself feel better? 
What I do know, is that I should share this, that it’s ok to feel like this, I shouldn’t be ashamed. And nor should you. Thank you for all your messages, those telling me your stories of mental health and those thanking me for starting the conversation. As with the surgeries, if me talking about this can help, then it gives it reason and purpose. 
I know this is a depressing post. If you came here today for spirit lifting words or inspiration, then I apologise. I don’t have them in me today. 
Because I just can’t breathe. 

Sam xx 

Chronic Illness and mental health

I am very rarely lost for words, this blog is a stream of my internal thoughts and so I usually find it easy to empty my brain onto the page, but today I am struggling.  I am struggling because I find it really difficult to write about my own mental health.  I can share a million photos of me in my undies with my ostomy bag on show, yet when it comes to the health of inside my brain, it is tough.

I wrote recently about making the leap and asking for help and the response I got from you guys was overwhelming, so much love and support and people sharing their own mental health experiences, it made me realise that it is important to share these things along with the physical side of chronic illness.

The truth is that I am really struggling.  After 12 years of living with IBD and 4 surgeries in the past 2 1/2 years, my life has changed dramatically.  The past 3 years, things have moved quickly, surgery after surgery, change after change.  Each surgery, I thought would be my last but then problems arise and I find myself back under the knife.  I feel I haven’t had time to deal with these things, but just had to react to each event.  I think I went into survival mode.

Now, after my last surgery in January, I have 2 big hernias and know that the only treatment to get rid of them is more surgery and it has frazzled my brain.  It is the straw that broke the bad ass’s back and has crumpled me to the ground.

I went to see my GP last week to talk about it, I wound myself up all morning and was a shaking mess by the time I got there, I couldn’t breathe and felt like I would puke.  The idea of telling a stranger just how messed up the inside of my head feels right now was almost too much to bear but I did.  And she was wonderful.

She listened, questioned and encouraged.  We talked about just how huge the changes in my life had been and that it was understandable that I was having a bit of trouble in my head catching up with my body, we talked about PTSD (Post Traumatic Stress Disorder) and how the brain reacts to traumatic events.  How people with chronic illness often have issues with mental health and how society doesn’t always think about healing the mind as well as the body.

chronic illness and mental health

We talked about my feelings of having another surgery and she suggested that we try and make me feel better in my self before making a decision on hernia surgery.  Her thinking being that if I can feel better in my head, that I am better placed to decide whether to have surgery immediately or to put it off for a while.

I am on the list to see a psychotherapist, but there is a 10-12 week wait and so we decided to try some medication to help calm my anxieties and lift my mood.  I hate having to take any medication to make me ‘normal’, 12 years of taking meds every day to stop you shitting yourself does that to a person.  But I had to think seriously about what is best for me right now.  And this is it.

I don’t feel depressed.  I don’t think I do.  When I speak to friends with depression, they talk of a lack of hope, of darkness and feeling stuck in a hole.  I don’t feel that.  I feel massively anxious.  I feel panicky and distressed.  I can’t sleep for the millions of thoughts of all the bad things that could happen to me or the people I love.  I check plug sockets a lot.  I feel I can’t breathe, that something is trapped in my chest.  My heart pounds.  My throat closes.

Not all the time, there are times when I feel ok, there are times when I am fine.  When I feel that things will get better, that it will all figure itself out.

Then BANG! It hits and I can’t breathe.  I walk down the stairs and see myself falling and breaking bones, I get on the train and imagine the carnage of a derailment, I go to events and think about how I would get my family out if there were an attack.  I look at my hernias and think that I have had my fill of surgical luck and what if, this time, I die.  I panic when Timm goes out, visualising the policemen coming to the door to tell me he has been in an accident.  I think about the kids getting snatched, or hit by a car, or falling and cracking their head open on a kerb and never getting up.

And then later I am fine again.  I cook tea, I write articles, I have meetings, I go for a drink, I speak to friends.  I make plans.

Then it is there again.  Terror, fear, panic.  I sit in the garden at 3am to get some air, to overcome the stifling thoughts.  Adrenaline surges through my body, and I can’t sit in bed.  It compels me to get up and wander through the house, checking.  Checking the kids, checking plugs, checking locks.

And on and on, the cycle goes.

Well, it is time for it to stop.  And so, though I find it very hard to talk about, I am putting it out there.  The events in our life have to have an effect on our mental and emotional health, I know there is no shame in admitting this, but it is still tough.

This isn’t me, I am not a worrier or a panicky person, I am ever an optimist and think things will be fine, so it is a shock to suddenly have these thoughts and anxieties.

I know I am not the only person going through this and I just hope that in writing about it, I can help someone else to speak out and get themselves help.  I am not an expert, I have little experience in mental health, but I do know that when I have written about my physical health, that it has benefitted others, so hopefully in writing about this new hurdle, I can help someone else too.

 

Sam xx

Love Festivals, hate camping?

Love the idea of a festival but loathe the reality of sleeping in a tent, washing with baby wipes and shitting in a filthy portaloo?

You want to get yourself to Tramlines!

Tramlines festival in Sheffield is an award winning, city wide festival of live music taking place on 22nd – 24th July this year and is the perfect antidote to festival tent face.  Forget glamping, it’s all about music, glitter and ridiculousness and then getting in your own lovely bed at night!

Seriously, it’s a great idea for those of us who have disabilities or illnesses where the very idea of a festival sends chills.  Camping can be tough, camping at a festival with few facilities and acres of mud between you and your toilet can be a fucking nightmare.

Tramlines is a cracking deal for a weekend of music, at just £32 for a weekend ticket, it’s a full on bargain when you look at the cost of other festivals.  You can pay that for one gig!

reverend and the makers mark tierney tramlines

Photo: Tierney Photography

Sheffield is an amazing city for culture, music and nights out, and the awesome thing about Tramlines is that it is city wide. With a main stage at Ponderosa and second stage on Devonshire Green, you get the big festival feel and a cracking line up.  But what’s even better is the loads of little venues around the city showcasing bands, artists, film and culture.

Be sure to check out the Folk Forest in Endcliffe Park and the beautiful Sheffield Cathedral, as well as all the fringe venues around the city.

Your ticket gets you a wristband that allows you into a ton of venues and you can wander around the city and soak up the brilliant atmosphere and see bands and artists you would usually not know about.

This is a real bonus for those of us with accessibility needs. Festival sites are notoriously shit for accessibility, which can really put off people with illnesses or disabilities where they gave extra needs. Being city wide means you have a wider scope of places to visit and it’s a bit easier to check them out beforehand.

tramlines festival sheffield

Tramlines has accessible viewing platforms on the main stages and if you have a carer, they can get in for free!  There are a few Changing Places in Sheffield meaning if you or your pal needs a full access toilet, you have a choice. Check out the website here. 

The line up this year is fab, I’d highly recommend it for a weekend out whether you’re a regular festival goer or a festival virgin.  Get tickets now before they sell out.  And if you want to see my lovely son playing loud guitars, head over to see Goathead at the Leadmill on the Saturday!
I’ll see you there bad asses!!!!

Love Sam xxx

tramlines festival sheffield

tramlines festival sheffield

 

tramlines festival sheffield
Disclaimer: This is not a paid post, I’ve not received any remuneration for writing about Tramlines, but my brill hubby Timm is a festival director and so I suppose I do indirectly benefit from the festival. Even if I didn’t though, I’d still highly recommend it. Cos it’s wicked. So buy a ticket. 

I got surprise partied!

Well, what a marvellous birthday I had!  My birthday was last Thursday and I turned 35, we had a lovely chilled out day at home, I wasn’t feeling great and so I didn’t want to go out, but enjoyed hanging out with my family,  Timm told me that on Saturday, my mum would be taking me out for a treat and then in the evening we would be going out.

For years, whenever asked what I want for my birthday, I say a surprise party.  I say it to make Timm laugh as he says that I would hate a surprise as I wouldnt be in control and that the more I ask, the less likely it is to happen.  It has become a running joke for such a long time.

I had a few messages and phone calls from friends in the week before my birthday, asking what I was doing and when we would catch up and so I arranged a couple of meals out later in June and it made me know I wasn’t seeing them this week.  I *MAY* have been a little grumpy on the phone with a friend who asked me what I was doing and I replied “Well, obviously not seeing you if you are asking!”  (Sorry guys!!!)

So Saturday came and Timm dropped me to my mums house, she then took me to Jamesons tea room in Sheffield for a wonderful surprise afternoon tea.  It was so lovely, with proper tea, finger sandwiches, cake, scones, prosecco and even a fella playing piano! Such a lovely surprise, but it wasn’t over!


We then went to see a masseuse and spiritual healer who gave me a wonderful back massage (I sat on a massage chair as I can’t lie face down with my stoma) and also talked to me a little about how I was feeling about myself.  I came out feeling so relaxed and calm, it was perfect.  Thank you so much to my mum for a brilliant day.


Then we set off home, as we got to our house, there was nowhere to park on the front.  Mum stopped and called Timm, which I thought was odd but as she’s a nervous driver I thought she was going to ask him to park for her.  Timm came out and said to me “Sam, I got you another birthday present but it’s really big and is in the garden, so when you come in, can you close your eyes?”

We have an inflatable hot tub, and once before the wedding, Timm set it all up with twinkly lights and champagne.  I immediately thought he had done this again and so closed my eyes and walked up the side of the house with him, I thought I was being a smart arse and said “I hope it’s the hot tub!”

I walked in the back garden and Timm told me to open my eyes…

SURRRRRPRIIIISEEEEEEEE!!!!!!!!

My wonderful Timm had thrown me a surprise party! Lots of friends were there to celebrate and I was 100% surprised! I honestly had no idea, I can’t believe how everyone kept it quiet!

Thank you to everyone who made it and who helped Timm out, the house and garden were filled with balloons, banners, food, drink and love.  Our lovely friend Daz came and photographed the party along with Steve who did magic for us all, but everyone had pitched in and decorated, cooked and helped Timm out.  I am just overwhelmed by the love and brilliance of it all, thank you, thank you, thank you xxxxx

Here are some of the lovely photos from the night courtesy of Rockerline Photography.

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

sam cleasby surprise party sheffield blogger

 

 

Thank you again to everyone, it was amazing! Love you all xxxxx

 

 

Sam x

Clinimed Ostomy Skin Products

Clinimed are a company who supply ostomy bags and accessories and they sent me a goodie bag of products to try out, including medical adhesive remover in spray and wipe form, barrier creams, films and wipes and a carry bag.

I have to say that their carry bag is my favourite one so far, it is compact and has a hanger but the best bit is that it opens into a little shelf meaning when you are changing your bag out and about and inevitably there is no shelf or place to put your supplies, the bag solves that issue.  It also has a little removable mirror which is brilliant because as you may have found, many accessible toilets don’t have a mirror… Perhaps they think people with extra needs don’t want to look at themselves??


 Anyway, on to the products:

Firstly, I tried the Appeel medical adhesive remover.  This sort of product is a really important part of your ostomy kit.  When you are removing your bag without this, it pulls at the skin and can make it very sore, so it is something I use at every single bag change.  I use the spray to remove my bag by applying the liquid from the spray can, the cans are small and easy to fit in your kit and a little pump of the can gives out a lot of the product.

ostomy medical adhesive remover

I sprayed it on the flange of my ostomy bag and gave it a few seconds to get to work before peeling off my bag.  It worked really well and left my skin feeling quite moisturised, some sprays I have used before felt drying to the skin.  I then use the Appeel adhesive remover wipe if there are any residual stickiness around my stoma, this is particularly good for me as I am using a paste around my stoma and if that is still stuck to my skin, it can be tricky and painful to remove.

I also tried the LBF barrier range, this comes in a few different mediums which is good to have the choice as everyone has different preferences.  There’s a barrier film spray, film wipe, foam applicator and a barrier cream that comes in a bottle or sachet.  Barrier creams and films are used to create a protective layer between your skin and any ostomy output that could get on your skin.

The most important thing with ostomy care is looking after your skin.  The output from your stoma is very acidic and can burn the skin, also the act of sticking and removing bags all the time can have a negative effect on the skin.  If your skin gets open sores then it becomes wet, and ostomy bags don’t stick to wet skin, this can cause leaks which then makes the skin even more sore.  It is a vicious circle that is miserable to get out of, and so barrier creams and films are essential.

After you remove your bag and have cleaned your skin, you apply the barrier in whichever form you have chosen, allow it to dry and then apply your ostomy bag.

I prefer the barrier film wipes, I find them really easy to use, and like that I can put it exactly where I need it and then dispose of the wipe in the bag with my used ostomy bag.  The spray works just as well, but for me, I don’t like that it isn’t quite as direct, it sprays across a wider surface rather than dabbing it exactly where I want it with the wipes.  But then I have friends who would much rather use a spray can, you should try both and see what your preference is.

ostomy barrier cream

The barrier cream, in my opinion, is great for people with a jpouch for the dreaded butt burn, it is a light cream that feels nice on the skin and creates a barrier from the delicate skin around your bottom and the acidic waste output that you are passing.  I like it for skin around my stomach too where I have soreness but for around my stoma, it isn’t my favourite medium.  This is because I feel that any cream has to it a certain greasiness and that concerns me with the bag then sticking over the top of that.

You use the cream sparingly and rub it in well, but I found myself waiting a long time to then apply my bag as I was worried that the cream would make the bag stick less well.  For convenience sake, this is why I prefer the wipe.

The LBF barrier wipe dries in seconds, you clean your skin and then rub the wipe on your skin where it could come in contact with output.   It is a sterile product and so you can use it on broken skin and is no sting which is great as when you have open sores, the last thing you want is to put something on that will feel like salt in a wound!

There are lots of different ostomy products about and it can be confusing to know which one will suit you.  I also find that most people end up using the product that is first given to them by the hospital or stoma nurse, sometimes not knowing that they have options.  Everyone has the freedom to choose what sort of supplies they would like to use and a way to do that is to request the free samples from companies.

sam cleasby blogger ostomy ibd disability

If you would like to try any of these products, you can request free samples here or if you aren’t too sure what you’d like to try, you can speak to an advisor.  You can also call them on 0800 036 0100.  I’ve found the staff really friendly and helpful, so don’t worry about any ‘stupid questions’, there aren’t any stupid questions!!! There is tons of really useful information on the site, though if I am honest, it is a little clunky to find, but bear with it as I have just been reading up on more info on dehydration and found it very helpful!

So there we go, another ostomy review.  I love having the opportunity to try new products, but remember that you can try things too.  Don’t be afraid to get in touch with ostomy companies and ask for free samples of their products, there are so many different things out there and you have the ability to try them out.  Your ostomy is here and you have to live with it, but you don’t need to be suffering.  If you are having issues with your stoma, please speak to your stoma nurse and try different products till you find things that suit you.

 

Sam xx

 

Disclaimer: From time to time, I am either sent products for free to review or I am paid to review them.  This sort of work pays for the running of this site and keeps me in Gin and sparkly shoes.  I only work with companies who I feel are a good fit and who have products/events that I feel would benefit my lovely readers.  Whether I receive free products, or I am paid, my reviews are honest and all my own opinion.

I have taken the leap

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!

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