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Tired, emotional, guilty

I’m so tired. And the tiredness leads to anger, hurt, guilt.

I have no idea whether fatigue is something I just need to accept? Whenever I mention it to the doctors they look at me like I’m daft. “You’ve been through a lot” they say, “give your self a break”, “it all takes time”. Perhaps I expect too much of myself, but I really just wish I could be normal.

Every night, I get up once or twice to empty my jpouch, several times a night I wake thinking about whether I need to go to the loo. Since surgery I tend to have these vivid dreams, you know the ones where you feel like you’ve had a workout when you wake up? I also sometimes have stomach pains, butt burn and accidents.

So when morning comes, I just can’t open my eyes. I just don’t hear the alarm and Timm gets up with the kids. Every day. And the guilt builds… I wake up feeling so drained and exhausted that I can barely function. My limbs are like dead weights, my head fuzzy, my brain screams at me to go back to sleep. I feel lazy and guilty.

Timm leaves me to sleep as long as I need to. He never mentions it apart from asking if I had a bad night. But the guilt inside me is enormous, I feel I’m letting them all down. I feel like everyone thinks I am lazy.

I usually get up at 9am, a full two hours after I should get up. Some days I manage to get straight down into the office, some days I work from my bed. By midday I feel more energised and I try and get as much as I can done, but by 4pm I am flagging massively and could quite easily nap. Evenings are better for me, I feel more awake and often try and get housework done in this time. Then I’m usually in bed by 11pm (sometimes way earlier).

I don’t know whether it’s my routine that isn’t helping? Some nights, despite being completely exhausted I just can’t get to sleep and lay awake for hours.

Or I wonder whether it’s my diet? I have found I am now really intolerant to most vegetables and so my diet is quite restricted. The lack of vitamins and minerals worries me. I’m waiting for an appointment with the hospital dietician and have thought about asking to have my b12 levels checked. (People missing certain parts of the colon will have difficulty absorbing vitamin b12 and some need regular injections).

Sometimes I realise I don’t remember what normal is. My normal is so far away from other people’s that I wonder if my comparing myself to them is stupid?

When I say I’m tired, others talk of their tiredness too, and I think maybe I’m just not as tough as most people! Then I remember that my body has been through so bloody much in the past 18 months. That I’m missing an organ, that I’m learning how to use my pouch, that my body fights against me eating most healthy foods, that my immune system is knackered.

The thing I need to deal with the most though is the guilt. I feel like I need to apologise to Timm for how rubbish I am in the mornings. I feel like a bad mum and a rubbish wife.

I feel I need to explain to everyone that often I have a big front on. And that front is the mirage to tell you “I’m fine!” “I’m not weak” “I’m as good as you” “I don’t need anyone’s help”.

So when I’m seen on Facebook or instagram in the pub or walking the dog, know that it takes a big effort to do that, and I do it because I want to have the same abilities as others, I don’t want to be sick.

Know that every journey or trip requires planning to know where toilets are, a packing of wipes and underwear, a knowledge that using public toilets is an embarrassing experience because of the noise, that I’m using up valuable spoons to do that thing and will suffer for it later.

Please just have a little understanding that despite my brash, shouty, activist exterior I am still healing, still learning how to accept and use my new body and still dealing with the emotional trauma that the past 18 months have thrown at me.

Sam ✌️&❤️

Fatigue and Chronic Illness

I was talking to another j pouch-ee yesterday and she said something that struck me as so true.

You wake up and think you could take over the world. Then you try to get up and your body says “no way, you are 90”

You see, one of the hardest things about chronic illness is the fatigue. Fatigue isn’t being tired. It’s an exhaustion that is bone deep, a feeling that your body is giving up on you. It’s feeling that every fibre of your being is suddenly being affected by gravity more than anything else.

It was the idea of your brain and body being disconnected in some way that really made me think. I wake up most mornings with my head filled with ideas, plans and lists of things to do that day. In my head I am powerful and could rule the world!!! But no one told my body that. The head is willing but the body is failing.

The psychological implications of this are feelings of failure, guilt and disappointment. I worry that people think I’m lazy, that I look ok physically so why am I in bed? I worry that others will see me smiling in a photo on Facebook and then wonder why I’m saying that I’m physically exhausted and struggling. I feel guilty that the lives of myself and my husband revolve around my illness. I feel guilt that my input to our business is so minimal. I think about how much I feel like a failure, that the physical work I do is dramatically lower than the amount I’d like to be doing.

I am disappointed that my recovery is so slow. I was told it takes around two years to fully recover from j pouch surgery and I know that my body has been through so much this year and I need to give myself a break. But I just wish I was back to ‘normal’, I would love to be full of energy and ready to kick some arse.

I would just like my body to listen to my mind. My mind is filled to bursting with ideas… It’s constantly whirring and I just wish I had the physical energy to fulfil just some of those ideas day to day.

There is a huge problem of a lack of understanding, people don’t understand and comment on chronic illness with a condescending and patronising tone that they somehow think is helpful. I was sent this chronic illness bingo sheet today by a friend and I think I could mark of every single one!!!

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Chronic illness isn’t just a disease you have to deal with physically, it is mental, emotional and social. It can be an invisible illness that makes the sufferer feel isolated and can spark depression and anxiety.

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I suppose today’s post is about speaking out, educating and sharing my experience in the hope that next time you, dear reader, are in contact with someone else with a chronic illness that you will be a little more open minded, a little more sensitive and a little more caring.

Crohns and Colitis Uk have produced an information sheet on IBD and fatigue, take a look for some official advice.

They also have a site about the studies going on right now, take a look here.

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Love Sam x

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

When things aren't going so well

It’s hard to be positive all the time, in fact it’s damn near impossible. The last couple of weeks have had ups and downs and I’m feeling the strain.

I blogged about Fridays events, Saturday we had friends over for dinner and had a brilliant night, it felt great to have a relaxed, fun dinner party with some wonderful mates. Overnight on Saturday I struggled to sleep,  having aches and cramps and just not feeling too good, Sunday was a chill out day but in the evening I was making dinner with Timm when the hernia struck again.

I went straight to bed and laid down, took my bag off and saw this big hard lump in my stomach right behind my stoma.  It was my insides coming through the hole in my muscles and it was fucking agony.  It was the same pain as Friday night so though it was extremely painful, it was slightly less scary as I knew what was happening.

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It felt like labour pains, a huge pressure in my abdomen and an unrelenting pain.  I was crying and panting and just couldn’t catch my breath, after an hour of this I asked Timm to call the hospital but with it being a Sunday night, my usually contacts of the stoma nurse, or stoma team at the hospital were unavailable.  In the end he called NHS Direct who seemed not to really understand the situation (they kept asking if I were opening my bowels and Timm kept explaining about the ileostomy).  Eventually after drinking peppermint tea, laying flat and having a heat compress on my stomach, I managed to massage and maneuver my intestine back through the muscle wall and the pain stopped.

I have seen my stoma nurse since who confirms that it is a hernia, and that the lumps and pain is due to my intestine squeezing through the hole in my muscles and getting kinked and stuck.  She says that hernias happen in around 40% of people with an ileostomy and that now the weakness is here, it won’t go away on its own and will just keep getting worse.

I have been in touch with my consultant who sees no point in performing a hernia repair operation as I am planning to have the pouch surgery this year anyway.  Originally I had asked if this could be performed in late September to fit around a crazy busy summer with work and our wedding vow renewal on September 6th.  This probably isn’t going to happen now, Mr Brown wants to bring the surgery right forward and I am seeing him this Friday to discuss.

The other thing I am struggling with at the moment is insomnia and tiredness.  Im struggling to fall to sleep and some nights Im up till 4 or 5am and then I feel exhausted all day.

I feel like I have taken a big step backwards in my recovery at the minute.  Everything seemed to be going so well, I recovered brilliantly and traveling in December and January was amazing, yet now six months down the line problems are sneaking up on me.

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Im not great at the minute emotionally or mentally.  I have been so busy with the talk at IWD and work as well as moving house this week that Im running on adrenaline I think, but in those quiet times at home I am feeling quite down.  I feel disappointed that I am struggling, Im a little angry that I have this hernia and I feel quite guilty that I have slipped back down the road of recovery and Im back to having to rest a lot and leave Timm to much of the things that need doing.

My sleep patterns are a problem, I just can’t fall asleep but then in the morning I am so exhausted that I can’t wake up, this teamed with the hernia means that Timm is doing 90% of the school runs, Im missing out on our family swim each week and I don’t feel confident enough to exercise, go to the gym or go out walking which isn’t helping my mood.

Im really anxious about bring surgery date forward, I have made the decision that I am going for the pouch surgery but thought I had six months to prepare myself physically and mentally for it.  Im stressed that bringing the date forward is going to make things really difficult for work and worried that I won’t be well enough to enjoy our second wedding.

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But I do know that it is a particularly stressful time in my life.  This year I am moving house, getting married, running one business whilst working for another AND trying to build a brand for this blog and myself.  All this on top of not being in great physical shape and facing more major surgery.  Oh and raising three kids and running a house…

So I suppose it is normal that Im feeling weepy, stressed and frustrated.  It would probably be weird if I wasn’t worrying about the ton of things going on in my life.  Im trying to keep things in perspective though, accepting my feelings rather than swallowing them down.  Talking about the stresses Im feeling rather than pretending everything is ok.

Ill update more at the weekend when I have seen my consultant and know what the next step is.

Thanks for reading

Love Sam x

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.

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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!

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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

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

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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…

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Love Sam xx