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Happy Mother's Day to all the sick mums

When you have a child, you make this silent vow, a promise to yourself that you will protect, love and adore this baby and always be there for them.  And so when something makes that difficult, when an unplanned illness or injury makes you falter at the most important job you have ever had, it is tough.

My kids have grown up with me having Ulcerative Colitis, Charlie was 3 and Ellie was 11 months when I was diagnosed.  Thom was born a year later, my body having fought against his during the pregnancy where I had awful flare ups that made me anaemic, made me pass out, made me lose weight and eventually be hospitalised on bed rest and blood transfusions.

 

sam cleasby mum parent blogger

They have grown up with a mum who runs away from shopping trolleys in supermarkets to go to the loo, who always has wipes in her bag way past a time when they could be deemed necessary for children.  They have seen me so ill in bed that I didn’t have the energy to help them get ready for school, they have had to visit me in hospital more times than is ever right for a child, they have stroked my hair as I lay in bed with them and brought me heat pads and pain killers when I couldn’t manage myself.

They have learnt to make their own breakfasts, lunches and dinners.  They come running asking “mum, are you ok” when they hear my fast footsteps to the bathroom and the slam of the door.  They cried when they saw me in pain, wiped my tears away before their own and cuddled me, all piling into my bed to watch a film because they know that is the best I can give at that moment.

When they shied away from me after surgery, because they were afraid of hurting me and thought my stoma was weird, it was the toughest time.  And now knowing that my bambinos have had a harder childhood because of my illness, it breaks my heart.

child carers parents with disability or illness

Having a chronic illness or a disability that sometimes stops you doing all the things you want to do can feel like having one hand tied behind your back, it can feel like you are at a huge disadvantage and believe me, I know the feelings of anger, frustration, hurt and pain when as a mum, you can’t give your kids everything they need.

But I have to believe that my illness has also given my children positives, that the lessons they have had to learn will do them good in their lives.  I see it already in my loving, attentive and caring children.  I see it in the fact that despite the fact that I talk about poo for a living, they aren’t embarrassed!  They are so compassionate and empathetic and they have an insight into invisible disabilities as well as visible disabilities than many adults don’t.  They know that the richest you can be is when you are happy and surrounded by those you love, that your health is vital as this is the only body you get, they know that life sometimes gives you things you don’t want, need or ever even dreamed of but that you have to deal with it all through talking openly, sharing your feelings, occasionally weeping in a snotty mess, then pulling on your big girl (or boy!) pants and making the best out of the situation.

And so to the mums who today are celebrating mother’s day who have had to, on occasion, put their health before their child’s immediate needs, who have a heavy heart filled with guilt when they think about the things their children have seen and dealt with, to those who are cared for in part by their children, to those who have a disability or illness that affects the whole family…

kids visiting sick mums in hospital

To you mums, I salute you.   I raise a glass in solidarity to all who are just doing their best to get through each day.  I feel your pain but remind you gently, that it isn’t physical perfection that makes for a great momma, it is love, kindness and the ability to hug, kiss and raise amazing young people.

Our babies may not have the upbringing that we dreamt of, but they have us now.

Today hold them a little closer and pat yourself on the back for being enough.

 

Love Sam x

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 ✌️&❤️