My life is small

I read a blog post the other day by Carrie Grant ( the vocal coach) which I shared on my Facebook page.

In it she talks about suffering with Crohns (which is a bowel disease like colitis) and about how she suffered with it in her 20's. As I read it one phrase just stuck out and I thought 'Yes! That's exactly it. That's how I feel'. Do you know what it was? 

My life is small.

That's what this illness has done to me. It's reduced my world, my life and controls so much of it. My life is small. I can't get this phrase out of my mind. Sitting on the toilet last night I was thinking about it (and I have plenty of thinking time considering how long I spend in the loo!) The best way I can describe it to you is feeling like in living in a box, a bubble, in cotton wool. I've become isolated and being so ill has restricted my everyday life. 

I wanted to try and get my thoughts onto paper and I stated scribbling away. Here's what I drew. 

The box represents my life now. The first thing that came to mind was my Hubby, my rock. Without him the last five and a half years would have been unbearable. He's never given up on me. He's never said "you know what? This is all too much for me. I'm tired of holding it all together while you're ill or in hospital. I want a wife that can do things, go out with me, make love to me, support me". Never. Not even when we argue or fight. 

Don't get me wrong he's not perfect (he still can only cook pasta and pizza) but he can iron a shirt now, he can buy school uniform, take the kids to get new shoes, run the house and at times be Dad and Mum. I probably wouldn't be here today if it weren't for him, oh, and of course my gorgeous kids. They give me a reason to get up in the morning, to keep going when all I want to do is give up. A hug, a kiss, a smile from them makes everything better. I do feel guilty though that their childhood isn't what I dreamt of when I first became a Mum. I wish my kids didn't have to see me in hospital, with tubes and wires coming out of me. It breaks my heart when I hear them talking to each other saying things like 

"Do you know Mum collapsed today" 

"Again?"

"Yes again. She was laid out over the floor"

But it has taught me to be grateful for the little things. That I made it to the school play, the football match, the parents evening; even doing the school run is an achievement for me. Little things that people take for granted or even see as an annoyance are the things that I thank God for and store in my bank of happy memories to be dredged out when times are tough. 

My family has been incredible. My parents and my sister have taken time off work to look after the kids and support Hubby, often at short notice, and I think our relationship has grown stronger despite the difficulties. I remember my sister coming to help Kitty and me fight when Dr7 said that the pain was "all in my head" last year. I remember ringing my parents in complete agony, crying and begging them to pray with me because the pain was just all consuming and I didn't think I had the strength to cope with it. I remember my Dad feeding me yoghurt after one of my ops in the same way you would feed a baby. I remember my Mum lifting my wedding dress up so that I could go to the loo and empty my Stoma bag. These memories are etched not only in my memory but my soul. And I am so grateful for the love they give me. 

You'll see that I've put friends inside and outside the box. The reason for that is that some friends have been with me every step of this journey. They've held my hand, mopped by brow and fed my kids. Some friendships have developed along the way and I would be lost without them now. But it's strange. Sometimes the friends that you think you can rely on, the ones you thought would be there for you, suddenly aren't. Maybe they're busy with their own lives, maybe they find me too needy, maybe they just don't like all this talk of poo! But then people that I might have just said hi to in the school playground or not been that close to suddenly step up and become a great friend, a great help and a great support. 

An example of this that springs to mind. A friend that I knew back from my NCT days but hadn't really kept in touch with other than on Facebook and the odd email sent a package to me. In it were gifts for the whole family. Things like magazines and smellies for me, books for the kids and bits for Hubby. They didn't have to do that but I was so touched that they had taken the time to do that not only for me but the kids and hubby aswell. This person understood that this was affecting us all. 

There are other examples, like a friend overcoming her fear of driving to London to see me in St Marks, another friend drove the kids to school for months, another had them for dinner and sleepovers, one did the ironing for us, another sent meals for Hubby to eat so that his diet was more varied that pizza, pasta, toast and cereal! The list goes on. I sometimes don't think people understand how much all these acts of kindness mean to me. I wish I could win the lottery and pay off the mortgages of every single person that has propped me up and held my family together because at the moment I feel like I have no way of repaying them. 

But like I said some friends become distant and I am left to watch their lives unfold over Facebook or Instagram. I don't blame them. It's just sad. Maybe it would have happened regardless of whether I became ill or not. But I look at my wedding photos and there are some people in them that I don't think I've seen in the last year, maybe longer. They were all the people that were important in my life at that time and I wonder how it happens. How you drift apart like that? But I'm guessing that's not just me, that happens to everybody. It's life. 

But this illness has meant that I've formed friendships too. There are people now that I would class as close friends that I've met in hospital that I never would have met if I hadn't been ill, or been on that ward on that day, in that bed. Kitty is a great example of this. We are kindred spirits that fate has brought together. And there are unlikely friendships too like me and IrishTeresa. She's 35 years my senior but we have a lot in common and have kept in touch since we spent 3 weeks together on the IFU ward earlier this year. I do believe that I have met people at certain times for a reason. Maybe I needed to hear their story, or I needed to share mine with them. Maybe I needed reminding that there are people out there much worse off than me. Or maybe they were good blog fodder! But they all left lasting memories for different reasons. 

But as much as I have got from this illness it has also taken so much away. I can't drive at the moment and I can't walk very far because of my numb leg so I feel like I have lost my freedom and my independence. Sometimes I feel trapped within the four walls of my house. It means I have to rely on other people if I want to go to the shops or if I've got a hospital appointment and that's not something I'm comfortable with. 

I can't work. The last time I was at work was in June last year when I collapsed and was taken to hospital by ambulance. So I've lost my career, my earning power. Now I'm dependant on hubby to keep a roof over our heads and benefits to put food on the table. I feel like I've lost part of me. Our jobs shape our identity and whilst my family always came first, I did enjoy the office banter, the challenge of using my brain, of learning new things. Some days I barely have any adult conversation and that can be hard. 

I've lost some confidence too. My self esteem has taken a nose dive over the last few years and I feel like in many ways I'm a burden to people. Sometimes my husband is more like my carer and (look away now Mum and Dad) our sex life has nose-dived. It's hard to be passionate when you're connected to IV fluids overnight and I certainly don't feel sexy wearing my tena pads in bed. But again he's never complained. And he's never gone looking for it elsewhere (as far as I know). He is a true gentleman. It also means no more babies for us. It's not just because we're not at it like rabbits but because my insides are so messed up that I probably wouldn't conceive and if I did then I wouldn't keep it. It's not that we wanted, or could cope with any more.  But it's that thing of being told you can't have them that makes you yearn for them. But could you imagine how much more complicated my life would be with a baby?? 

It's hard to be spontaneous, in the bedroom or just in life in general when my life centres around what time I need to take my medication, being bedridden due to the pain, spending hours on the loo, needing IV fluids, not being able to eat and being so exhausted that a trip to Tesco is a day out! Gone are the days of going abroad on holiday and going away for the weekend with just an overnight bag. Now I need to make sure I pack enough medication, tena pads, IV fluids and all the medical stuff I need to be able to do that, Ensure drinks...the list goes on and on. We are thinking of going to Nottingham for Christmas but already I'm thinking it will be a nightmare. Where will my 10 two litre bags of fluids be refrigerated when everyone's fridges are full of turkey's and wine? What happens if I get ill and get admitted into hospital up there? What if I run out of medication or forget to take something? My head feels like it's going to explode and it's only October!

I'm due to go to the St Marks Gala dinner this week but I'm dreading it. What will I be able to eat? Nothing. What can I drink? Only water.  I'm gonna look like a right tit not eating when everyone else is. Unless I take one of my custard pots and ensure drinks with me! I'm due to have IV fluids that night so do I have them during the day or do I have them in the evening as planned and take the 'retard rucksack' into London? And what if I get dizzy and pass out? All these worries and that's before I start to think about what dress and shoes to wear. I've not had a haircut since April and the pink is fading so do I dye it a conservative brown or do I renew the pink? Or even go blue? That's if I even have the energy to dye it. Suddenly something that's meant to be enjoyable turns into a nightmare for me. 

It may seem like I'm complaining and some people might think that I should just be grateful to be alive. And I am. I truly am. But I think it's human nature to want more. And what I want isn't to win millions on the lottery (which would be nice by the way) but just to be normal. To be average. To live at home rather than spend half my time at hospital. But this is the life I have and I do believe there's a reason for it. That all of this pain, illness and struggle is for some purpose. That's the only way I can stay sane, by believing that, otherwise it means that the Big Man upstairs is unbelievably cruel. 

NB x