Chronic Illness and Parenting – am I a shit mum because of my shit disease?

I’ve been thinking a lot about how my illness has affected my children and the relationship between us. I have three kids and every day they amaze me with their intelligence, kindness, character and awesomeness.

Till 2010 my husband’s job took him away from home for up to nine months of the year. So my kids (born 2000, 2003 and 2005) and I were this super close gang. The four of us were together all the time and though, of course Timm was a huge part of all our lives, it often felt like I was a single parent.

Even when my Ulcerative Colitis was bad, we would still be this team as we had no other choice! We had help from my mum, sister and friends but we got through it together. The kids didn’t really understand, which I’m glad of. They just knew that sometimes I was poorly and we would have film nights where we all slept in one bed and hung out. It meant I could rest and know they were are safe with me.

Timm stopped working away in 2010 and it changed our family massively and for the better. The kids loved him being at home and we started our photography business together. It made all our lives better.

When I was at my sickest in August 2013, I thanked my lucky stars that his job meant he was home to care for the children and give them the support they needed. I had a few weeks in hospital and then came home without a colon but with an added ileostomy bag. They had been so worried whilst I was in hospital and their concerns upset me. I hated that my illness was making them so sad.

Then when I got home, my bag and scars, the staples holding my body together, my tiredness and weakness scared them. They became afraid to hug me. Fearful they would hurt me. And to this day, though totally understandable, it is the toughest thing I’ve gone through. My babies being too afraid to hug me.

Fastforward eighteen months and they’ve learnt so much. My second surgery took away my bag and replaced it with my Jpouch. Though they knew more, and were less freaked out this time, they suddenly had to learn to live with a mum, who once again would run out of the room to dash to the toilet. Who couldn’t eat certain foods, who takes medication that cause drowsiness.

sam cleasby mother parenting

This journey I have been on has been tough on me, but my kids have been through it too. They’ve had to see their mum disappear onto hospital wards for weeks at a time. They all freak out when I have even a scheduled clinic visit now, terrified I won’t come home for weeks. They have had to learn so much and I truly believe that though it’s tough, and I wish they didn’t have to go through it, that they’ve come away as more empathetic, kinder, more open humans.

The problem with chronic illness is that it isn’t about a few weeks and then life going back to ‘normal’, the illness IS life and it’s learning to reassess how you live this odd life that you never planned for.

Currently I have awful fatigue, sleep problems, anxiety, pain, toilet and diet issues. I take high dose codiene every day that make me drowsy. I struggle to wake before 9am. I know I am tetchy, self absorbed, distant and sometimes just absent.

The kids have had to lean on Timm both emotionally and physically. This isn’t a bad thing, he’s their dad!! But for me, it’s a struggle to see him take over all my roles. This is such a selfish thing to say. The kids are fine and so is Timm, so much so that I occasionally doubt whether I’m necessary at all!!

sam cleasby mum parenting blog

This is selfish and all a bit me, me, me, but I’m just going to blurt it out anyway…

It hurts that they go to their dad instead of me. It hurts that they want him to do bedtimes, it hurts to know they ask him for advice instead of me. It hurts to feel left out. It hurts to feel my illness is a barrier between us.

I’m scared they’ll think I don’t care. I’m scared they think I’m lazy. I’m scared that when my head is so full of my own pain, anxiety and distress that they will think I wouldn’t drop it all in a second for their needs. I’m scared they won’t need me anymore.

See, told you it was selfish!!!

Because when I put my brain into gear and tell my heart to shut up, I am so proud of my family! I’m so happy to see Timm having this amazing bond with the kids that he missed out on when they were small. I’m proud to see them growing into confident, self assured, wonderful young people.

When I see that Timm has learnt to plait hair because I can’t function in the mornings and Ellie needs help, my heart swells. When Thom tells his teacher that it’s daddy who helps him with all his homework, I thank the day he stopped touring. When Charlie has an awe inspiring role model of a dad in his life, I am thankful and blessed.

Don’t get me wrong, they aren’t angels, and my illness makes me blame myself whenever one of them does something wrong. I can’t help but think that if only I was more present and full in their lives at the moment, that they wouldn’t have made that mistake.

sam cleasby mum parenting blog

When I tell them off and perhaps shout a little louder than necessary because I’m in pain. Or I’m too short with them because I’m desperate to go to the loo. Or when I’m distant and perhaps seem cold because I haven’t slept a full night for two years and I’m so exhausted I could drop. All those things swirl through my head for days, just worrying me that their childhoods are being scarred by my illness.

I just hope that they understand that my illness has played a big part of all our lives, but that I have always loved them, that they are always the first thing I think of in the morning and the last thing before I sleep, that they are the best things I ever did and always will be.

I hope one day I can explain to them that I wish it could be different, that being ill is tough but feeling like I fail them is tougher.  I hope they will know how much they mean to me.

And that I’m sorry that there were times that my illness may have hidden these truths from them.

Sam xx

 

 

 

Debbie Downer

Things aren’t brilliant at the minute.  I’m still really struggling with fatigue, I am so exhausted all the time, and this brings my mood crashing down, I feel sad, guilty and useless.  I am still waiting for a date for my hernia operation, the hernia isn’t too big but it aches constantly and I have to wear a big support belt to hold it in if I exert myself.  My anxiety levels are sky high when I think about going under the knife yet again.  We are dealing with some really stressful parenting problems that are filling my head with stress and making me feel quite isolated.

And then two days ago, whilst washing the pots, I cut the back of my hand on a glass quite badly.  After a four hour wait in A&E with the skin flapping off my hand, doctors glued it up and strapped up my hand.  They said I was very lucky and only just missed the tendons, as they lifted the flap of skin, you could see all the tendons and muscle moving and the bone of my knuckle!

bandage hand

It’s all strapped up now, but is very, very painful, my hand is swollen and I can’t move the first finger at all meaning I am pretty one handed at the minute.  I can’t believe how difficult life is with one hand!

And this may sound pathetic, but it has been the straw that broke the camels back.  I am done in.  I felt useless enough with the hernia and fatigue, I am doubting myself as a good parent and life is kind of crap,  but now not being able to use my right hand has floored me.  I know it will heal quickly and within a week or so I am sure I will be fine, but I am gutted how little I can do for myself.

Even typing this is a nightmare, I am one fingered left hand typing and so I will keep the post brief as it is taking so long.

I’m afraid I have little to be positive about today.  Life is pretty sucky and though Im sure there is a silver lining somewhere, I can’t find it right now.

The only positive is that I deal with everything with the awesome and unfaltering support of my husband, and though things aren’t great, at least we are together.

I will try and be back soon with a more shiny, happy outlook!

Sam x

Life with chronic illness – what it's really like

“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending,  there is no end in sight, there is no cure or end game.

And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it.  The guilt, the idea that you are a burden to those around you.  It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a patient, weak, ill. It is so hard to deal with this.

How on earth can you fight this emotional suffocation when the root of it is never going to leave you?  If you have a ‘normal’ illness, you see the doctor, get a diagnosis, receive treatment and get better.  Chronic Illness just doesn’t follow that path.  Often diagnosis is difficult as the symptoms can be confusing and varied, it is so hard to quantify a tiredness that never goes away, or a feeling that your limbs are lined with lead.  How do you explain that your mind whirs constantly whilst simultaneously feeling like it is filled with porridge?

sam cleasby ibd blogger sheffield chronic illness

Being ill in this way is living with the unknown.  Every day is different, it’s hard to plan when you have no idea how you will feel when you wake up, not knowing whether you will feel ok or like you are 100 years old.  And so it is hard not to feel anxious, depressed or completely lost when you are in living one huge question mark.  There are constant questions and often no answers.

When people say “Get Well Soon” or ask how you are feeling, it is an uncomfortable exchange, you can either lie and say ‘fine thanks’, or horrify them with honesty ‘Well I have a slight blockage, a hernia, I have been to the loo 16 times today, the acid in my poo has burnt the skin on my bum and I am so tired I feel like I am dying’ or the one I usually go for is ‘getting there!’ with a cheery thumbs up…

People don’t know how to deal with chronic illness, both the person who has it and the people around them.  There is no guidebook for lifelong illness, no way to answer all the questions because it is so personal and there are so many illnesses that are a lifelong battle.

When you have an autoimmune disease, your body is literally fighting against itself.  The physical side of it is all through the body, living with daily pain, fatigue, aches, toilet trips, medication, food intolerances along with hospital trips, surgeries, treatment.  It is, at times, too much to bear.

But mentally and emotionally it is devastating.

The title of this post is ‘what it’s really like’ and I want to try and explain how I feel mentally…

I feel like my body is a failure, that it lets me down constantly.  I feel guilty.  I feel like a burden to others.  I feel like I let down people around me.  I feel like someone has a grip on me, a crushing hold on my chest that is squeezing the life out of me, holding a pillow over my face.  I am exhausted from trying to be stronger than I feel.  I feel a sickly jealousy when I see healthy people.  A heavy hearted knowledge that my illness affects my husband and children, that I am not the wife he deserves or the mum they need.

I feel a sadness that sits deep in my bones, a guilt that is a lump in my throat stopping me from speaking and an embarrassment that my body is so broken.

exhausted quotes chronic illness

That is a bad day.  On a good day where I have little pain, few toilet trips and energy in myself, I feel upbeat, I feel proud of myself, I enjoy life because I know this healthy feeling may only be brief, I love harder, I am more open, I laugh longer, I am silly, I am fun. I have hope.

And hope is key.  Without hope, we have nothing.

This is life and so you have to learn to live it.  And LIVE well.  Your life may not be the one you have hoped for, the life you ever imagined.  But is the one you have and there is nothing you can do to change that.

You can’t take anything for granted, and sit on your laurels, you are ill but at least you have a life, there are many facing cancer and other illnesses that are terminal and so you can’t feel sorry for yourself.  (Not all the time, but sometimes everyone needs a full on mope!)

You learn to embrace and enjoy every good day you have, as you don’t know when the next one will be.  You learn to appreciate the small things, the good things in your life.  You take control of your own destiny and try everything you can to make your health better, through diet, medication, alternative therapies, talking, sharing, living…

Being sick makes you a lot of things, many negative, but some can be positive. Strength. Weakness.  Empathy.  Guilt.  Wisdom.  Fear. You have to take the lows, but learn to see, embrace and appreciate the highs too.

What is living with a chronic illness like? This is my story, but ask others.  You have a friend with ME/CFS? Lupus? Rheumatoid Arthritis? IBD? Don’t be afraid to ask questions, talk about it, tell them you want to hear how they actually are, not just ‘fine’.

The isolation attached to Auto Immune and Chronic Illnesses is immense and I feel that if we could all talk a little more about our lives, that we can help each other to bring discussions about illness into everyday life and make a difference to so many people.

This is my life with chronic illness.

Tell me about yours…

Sam xx