Chronic illness and kids – dealing with mum being ill

One of the biggest sources of my guilt and having IBD is my kids, I feel so sad that they have a poorly mum who they see in bed so often. They’ve visited me in hospital more times than is right for a child and they cope with it phenomenally.

Today I’m feeling pretty sad and I wanted to talk about my baby Thom. He’ll kill me for saying that as he’s a teenager now, but he’ll always be my baby.

I was diagnosed with ulcerative colitis before Thom was born and so all of his 13 years have been with a sick mum. He had dealt with this from conception as my IBD went into overdrive when I was pregnant with him.

Chronic illness parents and children

During my pregnancy, I spent months with diarrhoea, stomach pain and bleeding. As I should have been concentrating on growing his wonderful little body, I was dealing with my own illness. It felt as though my body was jealously fighting for my attention, there were times when I should have been revelling in his kicks and watching those little charts to see what fruit item he was the same size as this week, and instead I was hospitalised and having blood transfusions to keep my own body strong enough to just keep us both alive.

He was born 9 days late and weighed an amazing 11lb!! I like to think that was his first little ‘fuck you’ to IBD, that he was staking his claim saying ‘this is MY mummy and we aren’t letting you win!’

Chronic illness parents and children

Throughout his life, I’ve had 6 surgeries and many more hospital stays, there have been so many weeks where I haven’t been there for him and this breaks my heart.

He has learnt about my illness and is such a kind and understanding young man, every day he asks me if I need anything, can he do anything for me. He sees past my scars and ostomy bag, blind to any add ons and just sees me as mum.

Today I wanted to treat him, he’s on school holidays and as I work full time I’m never about during hols and so as Timm is at work and the other two kids are at school and college (different cities/different school holidays- why yes, that does make life a nightmare!!!) I thought I’d take him to the cinema. I still can’t drive, but we can get the train from our village straight to Meadowhall and I thought I’d be strong enough to try it.

Chronic illness parents and children

But my body had different ideas, I dressed and we got out of the house but then my bag started to leak. We’ve come home and I cleaned myself up but now I’m struggling. And so the trip is cancelled.

I feel so bad.

‘Im sorry Thom Thom, I just can’t manage it’ I said to him, knowing that he’s heard these words too many bloody times in his life.

He didnt complain. He didn’t sigh or roll his eyes.

He looked at me with love and said ‘mum, it doesn’t matter, go and lie down, I love you’

This boy of mine is a gem, he never complains, he never gets mad with me, he takes it all on board and smiles. He can adapt to any situation and knows that last minute changes of plan are just one of those things.

I love him so much and I feel so lucky to have such wonderful, kind and compassionate children.

Chronic illness parents and children

My illness brings a lot of stress into our lives, it brings my kids issues that I hate them having to deal with, but I also think that it has made them empathetic and deeply kind. They understand other people’s struggles and deal with it without drama or theatrics. They have a sense of humour and a sense of perspective way beyond their years.

And do though I often feel guilty when I can’t be like other mums, I also know that being the mum I am has brought positives to them that outweigh the negatives. And I’m a very lucky momma.

 

Sam xxx

Separating you as a patient from you as a person

This has been playing on my mind recently and I thought I’d get it down here to see what other people thought, how do you separate you as a patient from you as a person?

When you have a chronic illness, you spend a lot of time as a ‘patient’, from the endless doctor, nurse and hospital appointments to taking medication every day. When you have to consider your health on a daily basis it’s easy to feel like the you that is a patient has taken over the rest of your life.

I suppose I’ve been thinking about it as I’m recovering from an operation and I have been in full patient mode for a couple of weeks. I’ve been taking pain medication, sleeping and resting a lot and needed the care and support of family and friends much more than usual.

All my phone calls and visits have revolved around me, how I feel, how I’m recovering, if I need help. This has been so lovely and the thoughts, support and well wishes have been so heart warming. But it also temporarily changes your relationship with people.

So as I start to feel better and begin to step out of full time patient mode, it feels a little odd to be honest. Is it just me or has anyone else felt this?

Stomach bug and ostomy

My body has been in pain, I’m healing from the op and my husband has been my nurse during this time. He’s obviously seen me naked, but these times have been when he helps me in the bath, sits with me as I change dressings and my ostomy bag and when I’ve been in bed.

Then tonight as he leant over to hug me in bed, I felt myself freeze, I suddenly felt self conscious of my body when I thought about it in a normal way, though he’s seen me nude every day for 2 weeks, the idea of him looking at me with a husbands eyes rather than a nurse or caters eyes made me feel a bit embarrassed.

Its an odd feeling as I’m never usually conscious of my body, and this one tiny new scar has nothing on the other huge scars and my permanent ileostomy. I know he loves me however I look, but stepping out of patient me’s shoes back into every day me felt a little jarring.

I think it’s easy to forget who you are when you are always ill, but it is so important to take time to remember that your illness is just a small part of who you are, it doesn’t define you and shouldn’t be the biggest part of you.

I’d love to hear what you think about this, is it something that bothers you? Do you understand where I’m coming from? Let me know your experiences as I’m a nosy bat and I’d like to know if I’m alone in these feelings!

 

Love Sam xx

Yet another hernia surgery

Hello you lovely lot! Firstly thank you for so many wonderful messages of love and support, it means so much!

Secondly, I thought I’d take this time to explain a bit more about what’s gone on for the past week.

So last year, the tell tale lump appeared on my stomach, it was over the old stoma scar and I knew straight away it was another hernia. It hadn’t even been a year since the last hernia op and so I was really disappointed.

To be fair though, the hernias that we’re fixed in the surgery in 2016 were in the vertical scar through my belly button and also a parastomal hernia behind my stoma and these seemed to have held tight. This new one was just above my stoma in the old scar.

I had some scans last summer and the hernia was confirmed but I wasn’t ready to go ahead with another surgery. I was having a difficult time with me mental health and it all just felt too much.

Hernia surgery

Towards the end of last year, the hernia was causing more and more issues, I was getting leaks as it pulled my tummy out of shape, it was drawing my stoma inside my body and so getting bags to hold was a nightmare and it was painful.

I had my pre op appointment on 4th January 2018 and then was booked in for 12th March for the surgery. There was a blip where it was postponed till the 14th but then it reverted back to the original date.

I went in on Monday at 7am and was first up on the list. I spoke to the anaesthetic and to Mr Brown about what would happen and then went down to the operating theatre.

The anasthetists commented on how calm I was and how steady my heart rate was, which I found funny. I suppose after so many ops, you do get used to it and that unknown fear and worry is lessened. I also have such trust of the team in Sheffield that I knew I’d be looked after.

I came around a while later and though I wasn’t in pain, I was getting this feeling that I get after surgery, I think it’s a mix of the drugs, the anaesthetic, the adrenaline and being unconscious and I lay there feeling upset, panicky and tearful for no real reason!

Hernia surgery

I saw Mr Brown who confirmed that the hernia had gone down to my current stoma and as moving and resiting it is such a massive op that he had stitched it closed and meshed it again. This is a bit of a blow but honestly I was glad to wake up to the simple surgery recovery rather than a major op.

I just hope these fixes will hold now, the thought of more surgery is honestly too much to bear and so fingers crossed, this extra mesh will hold everything in place!

I was allowed home that evening, I HATE staying in hospital and I know I recover better at home in my own surroundings and so I was thrilled to get back to the kids and Timm.

I always forget just how much a general anaesthetic takes it out of you and I’ve slept pretty much for 3 days, though today I am starting to feel so much better and a lot more human.

Hernia surgery

Thanks again for so many lovely messages , from both family and friends and also readers of the blog. Each one means so much, especially when I haven’t even heard from my own mother so I’m feeling pretty shit! So it’s amazing to read so many supportive and caring messages and they honestly do help me a lot.

I have 2-3 weeks off work now and have spent the first week asleep! Timm is looking after me along with my kids and my big sis Lisa has FaceTimed me every day to chat which is fab. I hope I’ll be up to visitors in the next few days and can start to catch up with friends.

I need to be really careful for a few months to allow everything to fully heal, then the plan is to find a personal trainer with experience of abdominal surgeries and hernias to start to help me to rebuild some strength and feel strong, solid and able for the future.

Till then I’ll be found reading magazines, drinking tea and watching Netflix! Catch me on my Facebook, Twitter or Instagram

 

Much love

Sam xxx

Next surgery date

My next surgery will be next Monday, the 12th March and it’s for the hernia above my stoma from my old stoma site.

Im feeling really nervous for this one, I know it’s not the biggest or longest op I’ve had by far! But I think because I had mentally prepared myself for no more surgeries this one is freaking me out a bit!

I think my main concern is that the hernia is so close to my stoma that it’s a worry that if it’s too close, they may have to resite my stoma which is obviously a much bigger op with a tougher recovery.

The scans we are going off are from last summer and I know the hernia is much much worse than then.  So I suppose I’m just really apprehensive that going into a simple op may mean I wake up with a much harder surgery to recover from.

I’ll be heading in first thing Monday morning and it will either be a 1-2 night stay or a bit longer if the surgery is harder. And then home for a few weeks rest and recovery.

Work have been fantastic and have told me to take as long as I need, they are really supportive and it’s lovely as this is my first op where I’ve had sick pay!! After all my other ops we knew that it would be weeks and weeks of me earning nothing which obviously puts so much more pressure on us as a family and so it’s great to know that the pressure is off and I can actually concentrate on getting better without the voice in my ear telling me to get back to work and earn some cash!

Going into any surgery is scary, and I need to try and calm my nerves and ignore the dread in my stomach that something is going to go wrong.

Its not great timing, Ell starts mock GCSEs on the same day and I’m hoping that they can concentrate on their exams and not worry too much about me. The kids hate me being in hospital and I know they’ll be stressed next week. I hate that I cause them hurt and fear but we’ve talked about it and they’re feeling as ok as they can.

So I will let you know how things go next week!!

Thanks for all the messages of support

 

Sam xx

When your child is gay…

Last year my child told us they were pan-sexual.

At the time, though it was a surprise, I felt no different, I was pleased they knew they could talk to me and I was happy to know they felt comfortable enough to be themselves in a difficult and sometimes prejudiced world, but honestly? My thought process didn’t go much further than that.

Over a year on I thought I’d share my feelings about having a gay child and how my feelings have changed.

Well, one thing has been them telling me they were non-binary. I’ll be totally honest here, I really wasnt too sure what that meant. But after some googling and talking to my child about it, I have a much better understanding.

Theyre now 15 (how has this happened so quickly?! I’m sure I was changing nappies and freaking them out by watching Death Becomes Her only yesterday!!!) They prefer the pronouns they and them and sometimes I struggle with this. Not so much with the they/them but more when I’m describing them as my child.

Daughter or son flows off my tongue so much easier than child, I sometimes feel child or kid sounds less emotional, if that makes sense? I feel a bit like a Victorian mother saying “my child has done….”

Our relationship has never been closer, and the same goes with my husband. They share lots of things about their life (as much as any 15 year old does!) and we talk about anything and everything. (Including an in depth discussion about how a threesome with two men and one woman actually works!)

The biggest change for me has been how protective I feel.  Of course I am momma bear with all my kids, but it’s opened my eyes to the amount of bigotry that is all around me and I want to stand in front of them and protect them from ever hearing or seeing these things. I want to wrap a big blanket around us both and bat away any horrid or stupid or ignorant comments.

I know I can’t do this. And it hurts me to my soul.

I know they will face ignorant and hateful people throughout their life. I know people who don’t understand or don’t want to understand will push them away. I know that they will hurt sometimes.

I also know that those bigots will miss out on knowing one of the most amazing human beings on earth. My child is so kind, loving, funny, deep, silly, loyal, sensitive and fucking awesome.

Seriously, they’re my hero and make me want to be a better person every day.

I see things I didn’t see before. I see more of the comments on social media, not so much that they’re openly homophobic or hateful, more the snide comments that suggest anyone who isn’t cis gender is something of an attention seeker. Or that they’re something to be joked about and mocked. The comments or images where gender is questioned or laughed at.

Ive also opened myself up to a whole new world (for me) of language and understanding of gender and sexuality, I’m learning new terms and gaining a better understanding. This can be a bit scary, I feel afraid as a heterosexual cis gender woman to ask questions sometimes.

I’m afraid to say the wrong thing and upset someone, I don’t want to look like a tourist! But I think it’s important for me to educate myself so I can understand my child.

I even worry about posting this. I don’t want to put my voice above my child’s but I have always talked about being a mum on this blog and it seems worse to not talk about this than to be open. As with all my posts about my kids, they get to read and veto anything they’d rather I didn’t say publicly though.

Though my instinct is to stand in front of my child to fend off any negativity, I think the thing I’ve learnt is that I can’t do that. But I can stand right beside them, with my hand on their shoulder and my love in their heart so they know whatever they face in life, momma bear will always be right with them.

 

Love Sam xx