It will get better darling.

"It will get better darling" is what Hubby said to me over and over while I sat sobbing. He had only popped in to check how I was and grab some lunch and the poor bloke was faced with me having an emotional breakdown. 

What brought it on? Well lots of things. Being tired is probably the main reason. Being physically tired from celebrating Big Fella's birthday and coming home from hospital. And being emotionally tired from just living my life. Actually, it feels more of an existence at times and I'm pretty sure I wailed this to hubby at some point during my meltdown. 

I just feel like this latest hospital admission, infection and line removals/insertions has just knocked me down. Like it's pushed me backwards on my journey of recovery. 

I am very grateful that I was home to be able to celebrate Big Fella's birthday with him. Last year I was in hospital for his birthday but was allowed out for a few hours and the year before I was too unwell to leave the hospital so being at home with him was a major thing. 

Most of you reading this have probably always taken it for granted that you will spend your child's birthday with them (if you have kids). When you realise that you can't it's the worst feeling in the world. I spend most days feeling like I've let my kids down but to ruin their special day by being ill or in hospital is just about as bad as it gets. I hate to think that in years to come the kids will look back at birthday photos and go, "oh look, that's another year when mum was ill". 

I think what I hate the most though is that this has now become so normal to us. It's not normal, and I'm so sad that my kids have to grow up accepting that this is all I have to offer them. I love them so much but I do fear that I'm hurting them by yo-yo-ing in and out of their lives. I know I can't help it but it doesn't make it any easier. 

Anyway *drags self back to happy birthday memories* we managed to make it to drayton manor park which has become the tradition for Big Fellas birthday since he was 2. Bestie and her family joined us, along with my parents and my sister and her hubby. It was a shame that none of hubby's family could join us but we will be seeing them for a whole week when we go to Devon at the end of the month. 

Bestie had hired a wheelchair for me from the Red Cross. In the back of my mind I thought it would be useful to put the picnic and the bags on. Never did I expect to be using it. For the whole day. 

As I said, I'm experiencing a setback and part of this is serious fatigue. It's so bad that my whole body hurts. It hurts like I have flu. I can't walk anywhere without feeling like I'm going to pass out. I can't do anything because my limbs feel like lead. 

So I had to spend the day in the wheelchair being pushed everywhere. This was an interesting experience. I experienced embarrassment that a family member had to push me and I wondered whether it would spoil the day for them. I felt humiliated when people looked at me with pity, or just stared. I felt as though I wanted to explain to everyone that I'm not lazy, I'm ill and I don't want to be in this. I got battered around the head with quite a few handbags, with very few apologies. But I will tell you about the two priceless events that stuck out to me. 

The first was when I went to guest services to collect a special wristband that they give to disabled 'guests' as they call us. It meant that I didn't have to spend ages queuing in a line which was great as I couldn't stand, most of the line spaces were too small for the wheelchair to pass through and I never knew when I would need the loo. 

So off my sister pushes me to get this wristband and we were amazed that the very place you are told to go to as a disabled visitor actually has no disabled access. No ramp or handrail. So my sister cannot push me inside so I have to get out of the chair, she pushed it in, over the raised and uneven door frame and then I get back in. Totally humiliating for me and my sister was disgusted and just a little bit angry. It made me feel so bad that I have actually written to drayton manor. Let's see what their reply says. 

The second moment of the day was when I had been parked up to watch everyone go onto the log flume. Despite having my special wristband I only managed to go on one ride all day because I just felt too unwell. So I was parked, which was another source of frustration. Not being able to go where I wanted, trying to tell whoever was pushing to move me left, or back because the view they had standing up was different to the one I had sitting down. 

But anyway, I'm sat there watching them go up the log flume when a guy comes up to me with his camera. "While you're just sat there, could you take a photo of us?" he said pointing to his family getting ready to pose. Of course I obliged, I'm too polite to do otherwise but inside I was seething. While I'm just sitting there??!! JUST SITTING THERE. Are you kidding me? I'm in a wheelchair, not sat on a picnic bench. 

So it gave me a real eye opener into what wheelchair users face on a daily basis. It looks like I'm probably going to have to renew the weeks hire on the chair as we are over halfway through the week and I show no signs of feeling any better. 

So I was totally wrecked from the day at Drayton manor. Would I change it? No. Would I do it again? In a heartbeat. Because although I couldn't really do anything, at least I was there. 

Big fella was actually really protective of me and wanted to push me everywhere. Aah, that's cute, I can here you say. It was. But it was also terrifying in equal measure as he couldn't really see over me so couldn't see where he was going and as a result he tended to just push and hope that everyone else moved out of his way. Interesting technique but one that wasn't always successful so a few people ended up with bruised ankles or shins. He also pushed me down a slight incline (or is that decline?) Anyway it was downhill and he pushed me quite fast. I did wonder if I would make it out of Drayton manor any worse off than I arrived!!

But we had a lovely day. We had a fabulous picnic, which mum and dad did as that has become part of the tradition of the day. The picnic is always so huge that we end up having a second picnic after we leave the park sat by the cars! Besties husband has nicknamed it 'extreme picnicking'. I think it would make a good show on the TLC or Living channel? What do you think? Know someone that could apply?

Driving home from Drayton manor was interesting. Before I sparked out I got to thinking about this time last year. It was this time last year after the birthday trip to drayton manor that we had to make an unexpected detour to A&E because my colitis suddenly flared up on the journey home. 

In the 2 hours that it took to drive to our local hospital I went from being absolutely fine to being curled up in agony, drinking liquid morphine like it was orange squash. If you've read besties guest blog post then you will have read about this from her point of view. It's not easy reading. But for me that hospital admission signalled the real demise of my health and the year of hell that had followed. 

So sitting in the car, driving that exact same route brought a lot of emotions flooding back to me. Maybe this is what started me having an emotional wobble. Or maybe it was Big Fella asking how long I would be home for before I have to go back to hospital. Or maybe the fact that I fell asleep yesterday before hubby got home from work with both the kids in the house making me feel like 'shit mum' as opposed to 'super mum' which most people strive for. 

I feel like a complete liability at the moment. A burden. And I do feel that the lives that people with serious illnesses are expected to lead is nothing short of cruel at times. If I were an animal then everyone would agree that the kindest thing would be to put me down. But I'm not. I'm a mum. I'm a wife. I'm a daughter. I'm a sister. I'm a friend. And so I'm expected to battle on. 

But I'm getting tired of battling. I'm tired of waking up in the morning and hoping to survive until bedtime. I'm fed up of needing 15+ medications and IV fluids just to keep ticking over. But what can I do about it? Nothing. Apart from have a little moan on here. Pity party for one taking place!

I just feel like I'm constantly being robbed of my life. Having special moments stolen from me and replaced with hospital visits or days of being ill. This illness has tainted every part of my life. When I was diagnosed with this disease I never realised the impact it would have. I often think if I could rewind the clock what could I have done differently?

Was it the years of student boozing that did this to my bowel? My vegetarian diet? Was it all the painkillers I took as a teenager when I fractured my spine and had to have 2 operations? Was it the food poisoning that I got in Egypt on my first ever holiday with hubby? What was it? What did this to me? But I will probably never know. My biggest fear is that my kids will inherit it. I would rather they inherit the house and only that ;) 

But you know I try to be thankful for my lot and look on the bright side of things. So other than spending time with my family, and my birthday boy, this was one of the things that made me smile. Not just make my mouth turn upwards, but made me laugh. Made me smile properly. So here goes. 

This is the story as bestie described it to me (sorry honey if it's not quite right but all the meds affect my memory!)

Besties son: why does Nat park in the disabled spot? She's not disabled. 

Bestie: well she kind of is. 

Besties son: how?

Bestie: well she has a poorly tummy and can't do everyday things like most people. 

Besties son: what everyday things? What do I do everyday? I eat?

Bestie: well yes, Nat can't eat properly. 

Besties son: so she's disabled because she a vegetarian? 

Bestie: *big sigh* yes sort of

So there you go. If you don't want to end up like me, eat meat. Eat lots of meat!

NB x