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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 ✌️&❤️

Carers. Actual superheroes…

People sometimes tell me I must be very strong to deal with the illness, surgery and recovery that I’ve been through over the past ten years.  The truth is that the strongest person in my house is Timm, my husband.  You see, he has dealt with everything I have been through too, but he doesn’t get the support that I do.

Timm is my carer, he looks after me every day both physically, mentally and emotionally.  Part of me HATES this, I despise the fact that my husband has to look after me in this way, I want us to be equal partners and I feel bad that he has to care for me.  But the biggest part of me has just the hugest amount of gratitude and love for the man.

Carers are superheroes in my eyes and a grossly under appreciated resource in this country.  I can’t even imagine how I would have survived the past year without Timm in my life.  Not only did he take on all the responsibilities of the kids, housework and our business, he had to become a nurse, a therapist, an advocate and an all round hero.

 

sam cleasby timm cleasby so bad ass sheffield

 

 

Whilst I was recovering from surgery, Timm was brilliant.  As I lay in bed, resting and allowing my body time to heal, he did EVERYTHING.  But now four months down the line, I’m sad to say he is still being my carer and looking after me.  As I have blogged, things are not great at the minute with my jpouch, I am going to the toilet 15+ times a day, getting up through the night several times, I have massive fatigue and mentally I am not in a great place.  And this is where being a carer gets so much harder.  It is not about a brief period of nursing, when you are a carer of someone with a chronic illness, it is a life long relationship.  And that must suck.

I write this today whilst I am sat in bed.  This morning my husband got up with the kids and sorted them for school, he then got ready for work and came up, kissed me and told me to “rest, sleep and feel better”.  Every night I am waking 3-6 times and so I never get into really deep sleep so mornings are terrible.  I am so tired all the time!  I feel drained from pooing 15 times a day, I am fatigued and have this ache deep in my joints.  Yet the worst feeling is guilt.

I feel so guilty that I am not working, we run a photography company The Picture Foundry and currently Timm is doing everything.  I feel guilt and sadness that our ‘partnership’ is very one sided at the moment.  None of this is coming from him. He has never done anything to make me feel like he is fed up with this, he is never anything but supportive and wonderful.  It is all from me, I wrote recently about chronic illness and fatigue and there I talked about a feeling of waking with a desire to take over the world, that I feel I have a million ideas and want to do EVERYTHING, but then my body reminds me that it is broken and feels like a 90 year old!

 

being a carer is hard work

 

I just wanted today’s post to be a little recognition to the people in our lives who look after us.  Being a carer for someone you love is a role thrust upon you not usually one you would choose.  It’s a special thing to have the patience to care for another person, I know that Timm would brush this off, he would make a joke and say that he does what anyone would do.  This is one of his best qualities as a carer, he jokes about it, he takes the piss out of me, it isn’t all serious, he makes me laugh when the last thing I feel like doing is laughing and always makes me remember that my illness doesn’t define me.

If you are a carer then please go take a look at Carers UK, it is a great resource for anyone in a caring role and gives some pretty interesting statistics plus help and advice. There’s a statistic that says that 1 in 8 people in the UK are carers and that saves the state £119 billion.  Take a peek at the forum to speak to other carers.

There are also support services specifically for people with IBD and their friends and family, take a look at Crohns and Colitis UK.

carers in the uk saves the state billions

 

 

I just want to thank Timm once again for being so bloody awesome, he is just the best bloke in the world and makes every single day better for me.  I don’t know how he does it and keeps all the balls up in the air, he is juggling business, family, home and my health and does it all with an amazing sense of humour, a kindness that breaks my heart and constant love and support.

sam and timm cleasby sheffield

 

Love Sam xx

 

 

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.

chronic illness quotes

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.

worrying quotes

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.

feeling stressed quotes

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