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STRESSSSSSSSS

My stress levels are currently sky fucking high. My mind is whirring and buzzing, I can’t concentrate, my head just hops from one thing to another to another.

I’m due in for surgery on Wednesday and emotionally and mentally I’m all over the place.

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I feel so fucking grumpy, and sad, frustrated, angry and out of control. Basically think of all the bad emotions and that’s where I’m at.

Logically I am ready for the surgery, I have no doubts and I know it’s the right thing for me. I have a fab, supportive husband, family and friends. I have managed to catch up with a lot of lovely friends in the past week so I should be feeling happy.

In reality the stress is just getting to me. I *think* it’s probably normal to feel stressed out and emotional before major surgery. But I just feel so shitty.

I’m exhausted, I could sleep 24 hours a day, I’m mardy and a little bad tempered.  But then at times I sit awake for hours during the night with my head going into overdrive.

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Stress is an odd thing and affects everyone differently. I think I’m usually upbeat and good at dealing with it. But right now it’s affecting me physically, I have a headache EVERY day and I’m absolutely drained of energy. Mentally I’m very anxious, I keep thinking that I won’t wake up from this surgery, but more than that I’m worrying about everything else, for example I keep thinking that we’ll have a car crash or a house fire. I find myself panicking when I watch the news thinking it will happen to us.

I have a lot going on right now and so Im trying not to stress about being stressed! I think it is a normal reaction to a scary situation, so I am accepting my mentalness right now and just getting through the next couple of days till the surgery is done and dusted.

 

Love Sam xxx

Tiredness and Ileostomies

One of the things Im struggling with at the moment is tiredness.  They tell you before and after your operation that you may need to empty your bag several times a day and a couple of times through the night, but at those times you have bigger fish to fry.  Now on the whole I am well, Im used to dealing with my ileostomy bag and life is slowly get back to normal.  Having to wake two to three times a night is really getting to me.  Im so tired.

I wake at least once a night, but usually two or three times a night to empty my bag, this disrupted sleep pattern is touch to deal with.  I never wake in the morning feeling rested and ready for the day.  My husband has been great and he is getting up with the kids and doing the school run, but I feel guilty about that.

ileostomy tiredness insomnia sleep problems

Im trying to resolve this as much as I can by not eating after 6pm and getting early nights.  The problem is that I have so much going on at the minute that my head is buzzing with all the things I need to do that no matter how early I go to bed, I just can’t drop off.  I run photography company The Picture Foundry and as anyone who runs their own business knows, there is ALWAYS work to be done, Im also planning our wedding renewal which is happening in September and as a little sneaky whisper… we are moving house this year too! Shhhhh!!!!  All this along with having three kids, a dog, two cats and two chickens, running my family, caring for my own health and planning my next surgery means my life is a little hectic right now!!

The months of broken sleep are creeping up on me now, I haven’t had a full nights sleep since probably June last year when I started on the steroids… Man, now I have worked that out, it is NO WONDER Im exhausted!!!!  Im actually shocked at that.  To be honest it was probably before June as my flare up was bad before they steroid treatment began.

I can’t do anything about the reason Im waking through the night, I don’t have a large bowel and so my body can’t store waste, I have to wake to empty my bag and this is never going to change.  So after some extensive googling, I have come up with a few things that Im going to try to get a better nights sleep.

TURN OFF THE TV, COMPUTER AND PHONE

I have a terrible habit of bringing the laptop to bed, where I will either surf the internet, watch netflix or get work done.  This is such a bad thing to do, it means I have no winding down time and all that staring at a screen is bad for sleep, the artificial light apparently suppresses melatonin which is the hormone that regulates sleep patterns.

I have also started putting my phone on aeroplane mode and putting it in my bedside table so the buzzing doesnt disturb me and Im not tempted to pick it up!

MAKE THE BEDROOM DARK

I read this in a book recently and so we have been covering any little blinky lights in our bedroom as well as covering the alarm clock and making sure the curtains are shut tight and there is as little external light as possible.  I have an eye mask that Timm and the kids got my whilst I was in hospital and so this is going to make a comeback!

owl eye mask

AVOID BIG MEALS LATE AT NIGHT

This is a biggie for me as the reason I wake is because my ileostomy bag is filling with waste overnight.  You are apparently meant to limit drinks in the evening too but due to me being susceptible to dehydration I don’t do this.

EXERCISE

Regular exercise really helps with sleep, so Im aiming to exercise at least three times a week, whether it is swimming, the gym, a class or just a long dog walk.

MAKE YOUR ROOM A NICE PLACE TO SLEEP

Im trying to make my bedroom a bit of a sanctuary, a peaceful and restful place.  This is not easy with three kids.  Im forever finding lego in my bed and Monster High dolls under my pillow.  There is usually a stack of paperwork on my bedside table along with business books and a stack of laundry to be put away in the corner.  My room is usually a bit of a mess as its the last thing on my list of priorities.  I need to make it a priority.

I read something that said ‘Make your bed a place for ONLY sex or sleep’ – this makes a  lot of sense!!!

RELAXATION

As soon as I lay in bed, I start thinking of all the things I need to do, and it sometimes feels endless.  I worry about money, work, kids, my health, my family… Basically everything!!

I need to accept that I have a lot on right now and so Im writing lists.  If its on my mind, it goes on a list and hopefully this will help my inability to drop off once Im in bed.

If anyone has any other tips on sleep and tiredness, I would love to hear them!

Thanks

Sam xx

Sleep

After months of insomnia I’m thrilled to say that it is gone! That drug induced grind of being unable to sleep no matter how much I want to seems to have disappeared. The nights of being sat wide eyed and wired are in the past.

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But my sleep patterns are still a bit crazy. I wake several times a night, sometimes to empty my bag and sometimes just to ‘check’ my bag for leaks. I don’t think I’m really getting into that deep sleep, every noise and every creak wakes me. I can get back to sleep fairly easily and quickly but on average I wake 5-6 times a night and I’m tirrrrrred man.

Today is my first day back at work. Luckily I work from home running our business with my husband. (Take a look at The Picture Foundry ) so the stress isn’t on too much but I REALLY wanted to get up and do the school run this morning and I slept through the alarm. Timm has been doing all the school runs for 7 weeks now and I do feel guilty. Now I’m kind of back on my feet I know I need to share the role again but it’s so hard when I feel so exhausted.

My sleep patterns are really skewed, I can’t complain because after months of just NOT sleeping and having to take sleeping tablets it’s a joy to be getting any sleep. But it does make getting back to normal life a bit tricky. Waking at 7am and getting up to sort the kids then driving them to school just seems like a bit of a mountain to climb after a restless night.

Being a mum of three I have obviously had my share of restless nights, but when it is night after night and I’m never feeling fully rested or like I’ve had a deep sleep it is hard work getting through the day! I can’t even remember how I did this when the kids were little and I was up with babies in the night!!

It’s been 6 weeks since my surgery now and I’m feeling really good. Physically my wound is totally healed, I occasionally have a little pain in it. My stoma is working well, the stitches around it are healed and though I have the occasional leak, I’m kind if getting there with it. I still tire easily, doing normal every day tasks exhaust me and so I’m careful to allow myself rest and healing time still. Mentally I have good days and bad but it feels like there are more good ones! On the bad days I want to lie under the covers feeling sorry for myself, weeping and drowning my sorrows in tea. And so I do.

I allow myself to have shit days.  Days where I just don’t have the spirit to smile through the day, days where Im tearful and fed up, where I am pissed off and angry.  I think its important to let yourself release these feelings, that it helps with the healing process.  You need to have the dark times so you can appreciate the bright ones.  You know Im all about the positivity and so although I let myself have the pyjama days watching terrible tv and eating ice cream, I make sure that the next day I get up and do something that makes me feel good.  I won’t let myself go down a spiral of feeling lower and lower.

Today is a good day, Im off to walk the dog this morning and then back into the office to get back to work!

If only I can stay awake through it…

Love Sam xx

Feeling emotional – Stoma and Ileostomy worries

I am still recovering well, physically my strength is returning though I still feel very tired.  Im able to do more now, cooking and cleaning and have developed a terrible nesting instinct!  Honestly its like I am 9 months pregnant, I have an urge to rearrange all the rooms, organise and declutter the world!  This means my house is now worse than it was before as there are piles and stacks of ‘stuff’ everywhere!

I think now that I am recovering physically that my mind is working overtime and mentally I am struggling.  Im over thinking things and at times just feeling really sad.  Im sad that my life revolves  around this bag.  I spend so many hours a day in cleaning, emptying, changing, washing, worrying… I have never been the sort of person who spends hours getting ready so it feels odd to spend so much time on myself.

I spoke to a friend yesterday about the blog and how so many people had told me that it was helping them, and I was worried about posting about the bad days as I wanted it to be about positivity.  She told me that she didn’t think my blog was about positivity, it was about honesty.  And being honest is talking about the downs as well as the ups.  She also reminded me that a blog that was always hyper happy comes across as smug!! So I thought Id write a bit today about how Im feeling.

My sleeping patterns are still all over the place, some nights I sleep well, others the insomnia kicks in and I just can’t sleep at all.  Im also getting up once or twice in the night to empty my bag.  A friend told me that our minds get into habits and it will take time to break those habits.  From June till the end of September I was on Prednisolone and the meds made me be unable to sleep and so for all that time I was taking sleeping tablets.  So I know that its going to take time for my mind and body to readjust to sleeping without any drugs in my system.

But in the middle of the night, when everyone else is sleeping and the house is silent, I sit and overthink… These thoughts tend not to be positive ones.  I feel sorry for myself, a big pity party in my honour.  I sat the other night at 4am weeping at the loss of my ‘normal’ life.  Mourning the loss of a life that didn’t involve wearing an ileostomy bag and having to (literally) deal with shit every day.  I sat there wishing I could rewind time and go back to before my operation.  I cried about how my body looks and feels, that Im weak and tired and that I have the scar and this stoma, this weird looking thing on my stomach that spews waste and I have no control over it.  I feel sad that feeling unattractive affects how I feel around my husband.  I feel devastated that my kids still avoid cuddling me as they don’t like the stoma and are worried about hurting me.  I feel scared that the course of my life has changed so drastically and that it won’t ever be the same again.

When the sun comes up it also lightens my worries, its a lot easier to be upbeat during the day.  I talk to Timm a lot and to my friend Caroline, I know I can talk to them openly and honestly and I know that talking helps.  The old saying of a problem shared is a problem halved is so true.  Im not asking for an answer or a solution to the problems, but saying them out loud makes me feel that I can overcome them and that I have support.

At times when Im not feeling down I can look at things logically, I know that when I want to rewind my life or want my ‘normal’ life back, that actually before the op I was ill.  I was so sick, my bowel was ruling my life.  I was going to the toilet 10-15 times a day and bleeding constantly.  I was one the highest doses of meds and wasn’t responding at all.  If I hadn’t had the surgery I believe I would still be in hospital, I would have had to go onto drugs like Infliximab that carry such awful side effects.

I know that this surgery and my annoying little stoma has saved my life, though it is difficult, it has set me on a road to recovery, a road to a new life without pain, without bleeding and without medication.  Though I still feel that I spend a lot of time emptying and changing my bags, I have to remind myself that before the surgery I sometimes lost control of my bowels.  That was the most humiliating and devastating part of my Ulcerative Colitis.  Now I don’t have that worry!  Before the surgery I was in pain pretty much all the time, now I have no pain.  Before, I was bleeding so much from my bum that at times I had to wear a pad, now I have no bleeding at all.

talking through problems

I have a few friends who are going through really tough times at the minute, all in totally different ways but equally tough.  It makes me think about life and the challenges we face during our lives.  When I was younger and Id read about someone facing illness or the death of a loved one, I’d think ‘how do they cope?!!’ – I now realise that there isn’t an alternative to ‘coping’ – Coping is just putting one foot in front of the other, taking each day at a time and accepting that sometimes life is shit, things happen that are not fair, that situations feel so huge and overwhelming that all you can do is sit and weep.

Sitting and weeping is a necessary process, we need to express our pain and let out our frustrations.  Then we get up, brush ourselves off and keep going.  I think it is so important to have people to talk to, this blog is cathartic for me, I feel that writing all my feelings here allows me to release them. Talking is key, whether it is a partner, family, friends or a councillor.  I think if we can talk things through and be open about our feelings it really helps.  Giving a voice to your worries takes the power away from them.  We all know that we can take a concern and make it bigger and badder in our heads than it really is, speaking about them with someone you trust deflates the worry and I swear it will make you feel better!

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Its not about ‘getting over’ a tough time, its about learning to live with it and that is what I will do, I will accept the bad days and sometimes Ill sit and weep, but I will keep going and learn to live with my stoma.

 

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