Happiness and Optimism

I am getting a lot of emails from people who read this blog who are going through tough times, whether it be through illness, relationships or just life in general. Firstly thank you to everyone who emails or messages me, the reason I started this blog is that I wanted to help people. I wanted to give a voice to people with IBD or who are living with a stoma. To get people talking and the break the ‘poo taboo’ so it means so much to see that it is doing that. And more!

Though my blog is about life with IBD and a stoma, Im realising that many people who are reading it don’t have either, but are finding strength and inspiration through the topics I talk about. Wow! You have no idea how much that means to me. It makes my blethering into the ether of the internet feel worth it. If I can help one person, I will be the happiest person alive!

So I thought I talk about happiness. Ive said before that I think happiness is a choice. No matter what shit we are going through, no matter how dark our mood, we can all make the choice to be happy. Even if that happiness is one fleeting moment through an otherwise crappy day. I really believe that trying to be positive, looking for the silver lining and opting to smile rather than frown, laugh rather than shout makes us feel better.

happiness quotes

Sometimes that is hard. A bereavement, an illness, a divorce… Of course there are times when we feel life is against us. In those dark times, thinking of something positive can feel impossible. And feeling sad is a natural thing, we need to feel sad, to cry, to shout to deal with the situations we go through in life.

Having a moment of happiness, or gratitude, or pleasure does not take away from the gravity of whatever problems you face. But thinking positively and trying to be happy, whether it be the hug from your child, or ten minutes sitting with the sun on your face, or a phone call with a friend, or just a damn fine cup of tea can make you feel better even if it is just for a minute. In being mindful of these moments you can give yourself the choice to be happy.

happy good for health

Plate by MBart Studios

There have been many studies about happiness and optimism, and it has been found that positive emotions can undo the effects of a stressful negative experience. You can read a great article about The benefits of Optimism here.

I think we all need to be a little kinder to ourselves, we say things about ourselves that we would never say of a friend (or even foe!) If when we are feeling down about ourselves we could try just for a moment to think of the positive things about us and say them I think we could be happier. We are very British though and hate to be seen to me immodest, but screw that! What is fantastic about you? Are you kind? Are you a good friend? Are you loyal? Or brave? Or hard working? Do you do the BEST Tina Turner dancing in the world? Are you funny? – Seriously, think about the characteristics that you admire in others and ask yourself if you have them too. If you do, then celebrate that! If you don’t, think about why not.

Think about what makes you happy.

I LOVE having friends round for dinner, a bottle of red wine, the fire blazing, a great dish in the middle of the table that everyone tucks into. Sitting around the table, talking, laughing and being together.

Sitting in the garden with my eyes closed and the sun on my face. Listening to the noises around me and just being.

I really love being curled up with a book. I like to be totally snuggled with a blanket and cushions and just sink into the book.

A cuddle with my children and the smell of their neck.

A date with my husband.

Painting my nails.

A really good nap!

Listening to music. SInging loudly. Dancing wildly.

Walking the dog.

Watching a good film – we have ‘cinema night’ where we all pile on the sofa, lots of blankets – a film on, and lots of goodies to eat.

Think about the things that make you happy. Its not about money, its about the small things you can do that make you feel happy and good. Think of those things and then DO them!

Of course we all have time and money constraints but we can do one thing a day that makes us feel good. Whether it be getting up before everyone else and having a cup of coffee or wearing your favourite pair of shoes. We can do it. But it means making yourself and your happiness a priority.

You are worth it. You deserve to be happy. Make time for it.

happiness quote

So today, my mission for you if you choose to accept it, is to think of one positive thing about yourself and celebrate it. And to do one thing, no matter how small, that makes you happy.

MIne are:

I was told today by someone that I inspired them. I feel really bloody proud of myself for that.

I ventured out into my garden with a cup of coffee and sat in the sun. I had 10 minutes of just being outdoors, alone, in the quiet. Not worrying about things that need to be done. Just sat… And it was heavenly!!!

So go on, get to to it. It would be lovely to know how your mission goes, so please leave a comment.

Love Sam xx

Sore skin and ileostomy

I have been having some soreness to my skin underneath where my bag fits. I spoke to the stoma nurse who said that it was common as when you are removing the wafer and bag, you peel carefully from the top and then once you are past the hole, you tend to rip it off quickly.

I thought this was what was happening so I made sure I was doing it carefully but unfortunately despite this, my skin was getting more sore.

This morning when I changed my bag my skin underneath was bleeding and so sore. I have been avoiding mirrors but I looked at myself and saw that the shape of the soreness was oval. My wafer is round…

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I suddenly realised that when I was taught to put my bags on and off, I was laid in bed. So now I always put them on whilst I’m laid down. Then when I stand, my skin is pulling downwards (the joy of having had three kids!!!) and the wafer is trying to keep it pulled upwards so its tearing at my skin and making it really sore!

I stood at my dressing table and put my bag on whilst stood up. I can’t believe the difference! You can see that whilst stood my wafer should stick a good centimetre or so higher than where it has been sticking when I put it on laid down!

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I’m hoping this is going to help with the skin soreness and also with the very slight leaking I have been experiencing.

I thought it was worth posting for other people with ostomies as its been a revelation to me!

Love Sam xx

Feeling unattractive

Today has been a bit of a write off, after last nights abysmal sleep I spent the day feeling exhausted, emotional and just a bit crap.  There is no rhyme or reason to my emotions at the minute, sometimes Im feeling fantastic, really positive and raring to go, at other times I am feeling low, Im teary and finding things tough.

Today I am feeling very down.  I look in the mirror and see my scar and the bag and I feel so unattractive.

Before the surgery I was kind of upbeat and didn’t think I would feel bad about my appearance, I think after being ill for so long, vanity was the last thing on my mind.  But now the dust has settled and life is going on, it feels like an issue.  Im very conscious of smell – I worry that I smell of poo.  Timm tells me in all honesty that I don’t, and logically I know I don’t, the bags have filters and the output actually doesn’t smell like poo anyway!  I think its just that I am aware that I have waste sat in a pouch on my stomach and the fear of it sets in.

At times when Im feeling down, I can’t imagine how Timm can bare to be near me.  Surely it must put him off? He can’t really want to hug me or lay next to me in bed? With my gurgling stomach and bag of poo, why would he want to put his arm round me?  These feelings are tough.  My eyes are filling with tears now because those thoughts make me feel like Ive been punched in the gut.

Its hard to look in the mirror at the minute, Im both intrigued and disgusted by my new body.  Having to clean my skin and stoma means touching it and being aware of changes to my skin, but there are times when Id love to just cover it all up and not look at it, empty it, clean it.  There are times when I just want to stick my head in the ground and pretend its not there.

I worry Timm will not find me attractive any more, after all, if I don’t then how could he?  We had a chat today after I cried a LOT.  He is a wonderful fella you know, he tells me that this will never affect our relationship, that he loves me and everything will be ok.  He says all the right things and he makes it better.

The kids are honest.  Im glad of that but its still hard.  They tell me its ‘weird’ and that they don’t like seeing my stoma, they say that it upsets them and avert their eyes if they are with me when I don’t have my bag on.  We have always talked openly and honestly with the kids and the same goes with my surgery.  Its been a tough few weeks for them and Im so proud of their resilience and courage.  I can’t imagine how scary it is for a child to know their mum is having an operation and I was away from them for two weeks!  But I do feel sad, I feel like the bag is a barrier between us, they don’t like it and so they’re not as likely to sit on my knee or cuddle me and that is hard.  But I won’t push them, they need to deal with it in their own way at their own pace.  Im sure as time goes on, they will get used to it and it will just become normal.  Its such early days so I am sure things will get better.

Things WILL get better, I know that.  I will get used to my bag and it will become more normal for us all.  I keep threatening to do a quote a day on my bag a la Matt Helders (Arctic Monkeys) drum skins…

matt helders drum skins

Im thinking if I have to wear this bloody thing, then I may as well rock the shit out of it!  Im trying to think positively by looking at how I can still feel like me through all of this so Im looking at clothes that will work better with a bag, ostomy covers and even some nice underwear and swimwear.

I struggled with whether to post this today.  I do not want to come across as needy or whingy.  Or as one of those girls who say ‘oh Im ugly’ so that others say ‘noooo you are SO pretty’ – you know the type!  That’s not what this is about.  Anyone who knows me, knows Im a fairly confident person.  But I thought it was important to chart the negative feelings that come about with having this surgery.  For others who are going through this to know that there are other people who are feeling that their confidence has taken a bit of a thrashing.

I refuse for this to be an entirely self pitying post, so thinking of the positives…

It was our son Charlie’s 13th birthday party yesterday, Timm planned it all and made him a BMO cake from Adventure Time and it was fab, he just had some friends over to watch a film, Timm set up the projector in the living room so it was like a cinema and made a ton of pizzas and popcorn.  A lot of Charlie’s friends are budding musicians so they brought their guitars and all had a bit of  jamming session.  It was a lovely night made better by the fact that Charlie said we weren’t an embarrassment to him… High praise from a teenager!

BMO cake adventure time

Timm and I are continuing to plan for our trip to Vietnam and Australia in December – Im so excited.  I can’t wait for us all as a family to experience so many new things and it will have been 14 months since I saw my sister and her family so it will be fantastic for us to be together again.  The fact that I don’t have to worry about a flare up just makes it all so much better.  I joined the Ileostomy and Internal Pouch support group and have been looking on the forums for travel advice.  I got a Travel Certificate which explains to airport security that I have an ileostomy, you can get one either from your stoma nurse or the IA using the link above.

Just three more days till I am off the steroids! Woohoo!! I am hoping that once I have finished the steroids that problems such as insomnia and mode swings will stop too.  There’s a good possibility that my down mood today has been magnified by the meds, so thinking of being steroid free is a real positive thing for me to look forward to, I have been on them now for almost three months.

Im sorry that todays post is a bit of a pity party.  My negative feelings today have been really overwhelming, I have cried a lot and just felt really sad.  I haven’t been out of my pyjamas and barely made it out of bed.  But I know that there will be good days as well as bad and as rubbish as today has been, I have got through it and tomorrow will be a better day!

Thanks for reading, please feel free to keep sharing the blog with anyone you think it could help.

Love Sam xx

4.30am Insomnia

Awwwwwww man!!! This post comes to you at 4.30am and it serves me right for blogging yesterday that I thought my insomnia days were over!!

Went to bed quite early at 11pm and managed to get off to sleep. Woke at 2am – emptied bag.

Slept for an hour.

Been up since 3am.

Feel exhausted but can’t sleep again.

I hate insomnia.

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Love Sam xx

Coming off medication and nap time

One of the medications for Ulcerative Colitis are steroids, I was put on a course of Prednisolone in June this year. I started at 40mg a day and this did cause my flare up to go into remission. The problem is that when you put these steroids into your body, your body stops producing them itself so you can’t just stop taking them.  You have to taper them down by reducing your intake over the course of weeks or months.

I was tapering at 5mg a week. But unfortunately once I got to 10mg, I started to flare up again so my dose was increased again. This time the steroids didn’t affect my flare up, it just got worse.

This was the point that I ended up in hospital on high dose IV steroids. I had these for 6 days and they didn’t help at all. I actually got worse while I was in hospital – I was going to the toilet 12-15 times a day and losing so much blood. And that’s why the decision for surgery came about.

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Annnnnnyway, the same thing needed to happen with the tapering from the IV steroids, so since I left hospital I have still had to take prednisolone. They put me on a fast taper of dropping 5mg every three days. I’m down to 10mg and will be off them totally in four days time!!

The whole time I have been on steroids I have had insomnia. Deep unrelenting insomnia. Since the end of June I haven’t slept a full night and have taken sleeping tablets pretty much every night. Insomnia is soul destroying, the tiredness without the ability to fall to sleep is tough!!

I also have to take calcium twice a day as steroids can cause osteoporosis, and since my surgery I have to take lanzoprosol for the course of the steroids.

So in four days I will drop four meds! I am already off ALL my Ulcerative Colitis meds. Unless you have to take regular meds you’ll have no idea how emotional it can feel. I despise the fact that, for ten years, I have had to take numerous daily drugs to make me function as a normal human being.  In four days, the only medication I will be taking is paracetamol and codeine for pain relief.  And as Im recovering I will be slowly taking less and less of those too.  Im so happy about coming off the meds I could weep.  The surgery has been such a huge thing, but the light at the end of this tunnel is that because I had my large bowel removed, I no longer have Ulcerative Colitis.  Im cured.  I just don’t have it any more.  How cool is that???

If you want to know why Im so happy to get off the steroids, just take a peek at this list of side effects

medication funny

As I have dropped down now to the lower doses of the pred, it seems that the side effects are waning too.  Last night I said something to Timm I haven’t said in months – “Im dropping off, Im going to bed” – I still had to take a sleeping tablet but I went to bed at 11.30 and fell straight to sleep.  I got up around 5am to empty my bag, but then went back to sleep till 9.30am.   The last couple of days I have actually woke up feeling rested in the morning.

Now, I don’t know whether its to do with the meds or because I have been doing a little more but I feel sooooooo tired today.  Really exhausted.  I know I need to just take it as a cue from my body to slow down.  Its a weird feeling after months of insomnia and sleeplessness that all I want to do is nap.  I feel like a switch has turned in my head, I feel less manic and less hyper.  I feel like everything has just slowed down a little.

Today is my son Charlie’s 13th birthday party, he is having a few friends over for pizza and movie night.  Timm has taken over completely and has organised everything!  So I am going to spend the day napping, reading magazines and generally relaxing and then this evening Im going to hide in my bedroom with Thom and Ellie, my younger kids away from the teenagers!!

And now, Im off to nap…

nap time funny

Love Sam xx

Patience and Recovery

Its been 17 days since my surgery and Im healing well. My wound is closed and I have no pain in it, the scar is about 6 inches long and as it was stapled together I have the line and dots of a staple scar. A friend told me that after she had surgery, her doctor told her to use any sort of natural
oil, grape seed, olive etc – that you didn’t need posh bio oils or other ‘scar healing’ lotions or potions, and to massage her scar for 10 minutes a day. The motion of massage encourages healing in the scar, it improves blood circulation and increases the collagen. She showed me her scars and they were thin white lines, barely visible. So I have taken this advice and I hope it will help mine too.

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My stoma nurse visited today, she is fantastic and answered a few questions I had. I have some soreness to my skin where the ileostomy bag sticks to my skin right at the bottom, she advised that I am carefully peeling off the top of the bag when I remove it, and then pulling it off quickly at the bottom. And yep! She was totally right, that’s what i have been doing! The enemy of anyone with a stoma is sore skin. Sore skin can become open wounds very quickly, open wounds are wet and you cannot stick a bag onto wet skin. So good skin care is vital.

Im less weepy than yesterday, I think part of my problem is that I am still tapering off the steroids and they are notorious for affecting moods and emotions. Today feels more positive but I am struggling with one thing. Patience.

Im not the most patient of people at the best of times. I can’t leave christmas presents under the tree without a good squeeze. If I hear that someone is planning something as a surprise Ill pick at them trying to get clues!

Physically I am healing well. I am still taking painkillers regularly but everything is going to plan. Im well on the road to recovery. Im doing slightly more each day, this week I had the trip shopping and last night we went out to dinner for my son’s birthday. But I feel it when I do more, I tire very quickly and feel the pain more. When I lay down at night, I ache. Im walking well now and working on my posture as I have been stooped for weeks in protection of my stomach.

But now I can do more, it is very difficult to have patience with my body. I know I have to take it really slowly, that doing too much will hinder my overall recovery and could cause problems but Im struggling!! Timm won’t let me lift a finger, he’s still doing all the cooking, cleaning, school runs plus running our business so I feel bad in not being able to help him. He tells me off and just wants me to have the proper rest and recovery. Its nice to be looked after but quite difficult to accept. Im so used to doing everything for myself so it takes a big shift in mindset to look after myself first and allow others to help.

So I try to be patient. I know I need to put trust in my body and give it time to heal and get used to the huge changes that have been made to it. Im grateful and happy that it is doing this so well! I have had no complications and everything is healing well. My stoma is functioning really well and the pain is lessening. I find that the time between painkillers is lengthening slightly. Im not watching the clock to see when I can have more which is an improvement! The body is a bloody clever thing and mine is doing a great job.

I want to get back to work as soon as I can. I run our family photography business with Timm (go check us out – The Picture Foundry) and also work with arts group Responsible Fishing and we have really exciting projects coming up, so Im looking forward to getting back in the saddle. Weirdly, I also want to do some house work – I can’t even believe Im saying that!!! Timm is doing a great job, but you know what its like, no one can do things just as you do (nor do I expect them to!!)

I really want to walk our dog Lola. I want to do some gardening. I want to sand down the piano and paint it. I want to go to the pub with friends. I want to sort out my whole wardrobe. And make all the craft projects I ever put on pinterest. I want to go pick all the apples on the trees in the garden. I want to go on a bike ride. I want to be well enough to be at my friend Corinnes birth. I really want that. I want to drive. I want to visit friends.

Patience. It’s a virtue right?

 

patience

 

I will be patient. I have to be because I need to allow myself to heal and not do anything that could set me back.

So Im doing nice things whilst I recover. I watch a lot of films on netflix, Im watching a lot of TED talks (TED is a nonprofit devoted to Ideas Worth Spreading. It started out in 1984 as a conference bringing together people from three worlds: Technology, Entertainment, Design) I watch a lot of documentaries. I thought if Im sat in front of the box I can at least be learning new stuff!!

I am knitting. Im a crap knitter, I can knit squares. So Im knitting a LOT of squares that will eventually be sewn together to make a blanket.

Im reading. Im a big reader anyway but my concentration levels have been really low for a while, its nice now to be able to read more than one sentence (over and over again!) I was bought a book called The House of Leaves over ten years ago and got a third of the way through it before giving up. Its a very difficult read requiring you to flip back and forward and read things out of sync. My good friend James has just started it and has inspired me to try again with it… If you fancy reading it you can get it on Amazon.

Im blogging. Obviously as you are reading. It feels good to blog, its very cathartic for me and I can’t believe how many people are reading! Since I started in July Ive had over 10,000 views of this site – bloody hell chaps!!! Thank you!! From the bottom of my heart thank you for reading and commenting. Thank you.

Im planning our trip to Australia!!! This is a fab one. We are going to Australia via Vietnam to visit my sister, brother in law and niece in December this year, its the most exciting thing!! I was so worried about the trip before my surgery, nervous that I would have a flare up and ruin the trip, that we wouldn’t be able to do the things we wanted to do as I would be ill and need to be close to a loo. So now I have the bag, its exciting!!! There is no reason I can’t do anything everyone else can do. The only thing I need to think about it making sure I take enough bags and products that I need.

I meditate. Now don’t laugh!!! Im not ommmmming away in a corner, but I am spending ten minutes to sit and close my eyes, relax and partake in a bit of mindfulness. Its ten minutes of quiet. Ten minutes of feeling myself grounded, concentrating on my breathing and clearing my mind of everything. It makes me feel centred and calm. So don’t mock – try it… You might like it.

And I try to be patient.

Love Sam xx

Be kind to yourself

Today I need to remind myself of this.

 

kind quotes

 

I woke feeling unsettled, I didn’t sleep well again. Im still tapering off the steroids so have awful insomnia, Im still on the sleeping tablets that I have been on since June.

Its my son’s birthday today, so we got up early and Timm made birthday pancakes. Charlie opened his presents and we had a lovely morning together.

Timm took all the kids to school and I was changing my bag. My mind wasn’t quite on the job and I left the dry wipes on one side of the bedroom whilst I took off my bag, Timm came in just in time to get the wipes and crisis was averted. Such a non event. But it hit me hard and I had a big cry.

Such a silly thing. Nothing at all really!

Ive been so good at keeping positive and then one distracted decision makes me weep?! Blimey!

So Im reminding myself now. Be kind to yourself.

Im being kind to myself by chilling out today, I have surrounded myself on the sofa with cook books as I feel like baking as soon as Im up to it. I have my knitting out (Im knitting the only thing I can, squares, that will be eventually sewn into one huge blanket) I have blankets on and the fire is lit. For lunch Im going comfort food all the way with cheese toasties and soup. Im going to put on gorgeous expensive hand cream, a present from my lovely friends. Im going to paint my nails. Im going to drink hot ribena.

Tonight we are going for a family meal for Charlie’s birthday. I kind of did a bit too much yesterday in going out and feel exhausted and have some pain so its really important that I relax today so this evening goes off without a hitch!

As you are reading this now, I want you to remember how important it is to be kind to yourself.

Do one thing today to be kind to yourself, no matter how small…

Im not kidding… Go do it now!

 

Love Sam xx