What Does It Feel Like To Be Alone?

So today I realized what the word ALONE truly meant.

I thought I had a good support network. Small. But good. My sister, A couple of friends. And then recently, my new neighbour and best friend, and a girl I know from the hospital. Today I was told that because of the way my mental health has been, they wanted me to stay in hospital for a few extra days. That was Ok with me. But not with my sister, who has been looking after E. And not with my friend either.

So anyway, my whole support network has basically turned against me because of my physical and mental health. I need to get better and my consultant wants me to stay that extra few days, so I'm going to do it. That comes before anything else at the moment. 

I have two friends at the moment, my neighbour, who has also become my best friend, and a girl I know from the hospital. They have been there for me today, more than anyone else, they understand, they understand my Cystic Fibrosis and they understand my postnatal depression. Unlike those I thought were closest to me. I have tried to tell them how I really feel and it's like they don't believe me.

My so called 'support network' isn't like they said. The said they would be there to help me but when it comes to actually helping...

Well...

It seems like my mental health is such an inconvenience to them.

Being alone isn't just a physical thing... I am alone in my mind...
Just me, myself and my thoughts...

And sometimes that isn't such a great thing

This was just a short blog post to vent how I feel. But if you ever feel alone, just remember...
In the words of Dr Suess:

"Be who you are,
And say what you feel,
Because those who mind don't matter,
and those who matter don't mind."

Lots Of Love,
K 

How Does It Feel To Not Feel?

Did you get the feeling of love the first time you saw your baby? The first time you held your baby? The first time you heard them cry? That feeling of being so overwhelmed with love and pride that you could literally burst?

Yes? Well lucky you. Some of us don't get those feelings... We aren't that lucky. You may say, well you knew what having a baby meant, you knew what you'd have to do and what would have to change. But it's not about that... I wanted those feelings. the whole 8 months I spent with that little tiny baby growing in my womb, I longed for that amazing feeling that everyone tells you about...

 But I didn't get it. I felt guilty after a few hours. I held her for a very short period of time before I started to be sick... I couldn't even give her the first feed... Don't get me wrong, I'm so pleased that her great Aunt was able to do that,but I felt like I had failed. 

I had already felt like I'd failed when I started getting irregular contractions at 6 months. They managed to settle until 7 months. I was then admitted to hospital, after being taken in by ambulance, and given the steroid injections, being told that my baby was coming and would most likely be delivered in the next 48 hours. That feeling will never leave me. I was scared, anxious, worried and most of all, I was alone... I had her at 36 weeks and 4 days... Again failure that I hadn't made it all the way.

All I felt during my pregnancy was failure. And it hasn't got any better since having her. At first I just thought I was tired, my body was getting used to getting up every 3 hours, it was just how a new mum should feel... Oh how wrong I was. 

That's when my true feelings hit and I kind of knew something wasn't right... I didn't tell anyone however. My GP noticed my moods every time I was visiting him (once a week roughly at this point) and asked me how I was coping. He knew, but he needed me to tell him rather than him tell me... I broke down. I couldn't hold it in anymore. I was broken. I knew I should love this wonderful gift life had given me, and I knew what people would think if they knew I didn't... My GP diagnosed me with Postnatal Depression.

8 weeks had passed and she was admitted to hospital, again FAILURE. What had I done to make her so poorly? Why wouldn't she take her milk? Why was I doing such a bad job? All week, in my head, I I just kept doubting the doctors, they told me it was Bronchiolitis.

The thoughts I was having by now were not those of a mother who wanted and loved her child unconditionally. I was assigned a mental health worker. 

Want me to be totally honest?

I didn't love her like a mother should love her child, I didn't want to hold her, I didn't want to interact with her, I had no motivation to do anything. The things I did for her were out of need, not because I wanted to do them. Don't get me wrong, I cared about her. But I didn't love her like she was mine. I wanted to take her and leave her in town, for someone else to find her and take her away. I wanted to walk away from my house and leave her screaming. I nearly did a few times... But deep down I knew that I wouldn't even do that to a strangers child, so how could I do that one that I'm supposed to love? I'd sit outside for a couple of hours, while she screamed, I'd lay in bed and ignore her, or put her next to me in my bed, just so she would stop. We didn't go out anywhere, and when we did, I put on a brave face and acted like the Mummy everyone thought I was. It was so so hard doing all these things for her,  whilst thinking to myself, over and over 'It will get better, I will love her one day, I will want her'.

She's now almost 11 months old and I still feel the same about her, that I don't want her, that I don't love her like she was my own. I wish I didn't feel the way I do, but it can't be helped. I am getting the help that is going to help me in the long run, the only good thing I can see to come from getting the help, is that I'm not feeling any worse, I guess if I hadn't got the help when the GP suggested it, then who knows where we both would be by now... 

Postnatal Depression is a very serious illness, if you or someone you knows has any of the symptoms or has felt in any way similar to what I have been through, then get help. It may not seem like it will do you any good, but, I promise you, it will in the end. I'm sure one day I will grow to love my little girl like I should love her, and I will look back on this first year and think, yea, it was shit, but it was a learning curve, a bump in the road. I will get there and and I hope that one day my story helps at least a handful of people get the support they need.

All my love to anyone battling with any sort of depression or anxiety.

K💖

When Nurses Become Family...

Ok, so I'm a little over half way into this admission. I've found it difficult this time around, more so than usual, but you know what kept me going? One nurse in particular, he knows me well enough to know that I'm lying when I say I'm fine. He just says Ok, and leaves me too it, he never pushes me to tell him what's wrong, which I like. It means when I do talk to him about anything, it's on my terms. It's weird but he just knows when something isn't right with me.

He has done 5 shifts while I've been here. 4 nights, and one day. I looked forward to each of them, knowing that when he was here, I didn't have to pretend to be O k, I could be myself as much as I wanted because he wouldn't make me talk. All the other nurses ask, then ask if you're sure, then if they can do anything and so on, and so on...

The last shift my nurse had, he'd had a hectic afternoon, so everything was running a bit behind schedule, meaning that he probably wouldn't be leaving when he was supposed to. He came and told me the night shift nurse was going to do my tablets instead of him. A little while later he came in, and said he was actually going to do them. Do you know why? Because he knew, he knew I  wasn't right. He actually said to me, 'That way you might tell me what's wrong before I leave' And do you know why he said? Because he cares. He cares about every single one of his patients.

When you've been at the same hospital for anywhere near as long as I have, you see nurses come and go, you see doctors come and go, but the ones that were here in the beginning, become like family. They get to know you so well that you always have something to talk about, there's never a dull moment with them. They cheer us up, they joke with us, they tell us about their lives, we tell them about ours, and they listen. You know how I know that? Because when I've not been admitted for 3/4 months, they still remember families names., they ask about things that I told them about last time, that have probably happened by now. They remember how you like certain medicines done, or the way we do certain things. The number of patients they see and the things they remember about every single one, amazes me to this day. 

To Graham, Tilly, Caroline and

To each and every one of the nurses and Doctors on The Cystic Fibrosis Unit at The Royal Papworth Hospital.

Thank You From The Bottom Of My Heart

K💖

How Should I Feel?

Where do I start? Well, I guess it's that time. It's here. The day that I have been looking forward to for the last 6 months has FINALLY come. I should be happy right? I've got a chance to do something that not many people get the chance to do, and that is to take this precision medicine, every day for the rest of my life...

A precision medicine is medical care designed to optimize efficiency or therapeutic benefit for particular groups of patients, especially by using genetic or molecular profiling.

Sounds confusing right?  It is. I still can't get my head around how it works, but what I do know, is that Orkambi could change my life. In so many ways. I may not get as many chest infections, I may spend less time in hospital, my lung function may get higher again. There are a lot of things that could happen, but it isn't the same for everyone. 

This is why I'm not sure how to feel... I'm kind of excited and happy, but at the same time, I'm nervous, I'm scared, what if I have a reaction to it? What if I can't deal with the first 2 weeks of feeling like utter shit?

My favourite nurse was on the night shift at Papworth last night... G said to me 'Kelly, no one knows how you feel, except you'

You know, he's right to a certain extent. Who are you to judge me on my feelings? Until you have walked in these shoes and down the exact path I have walked down, you have no right to judge me. 

Feel what you feel, don't hide it. Talk to people when you need to, because keeping it to yourself is the worst thing you can do. Believe me, I'm there, but I have realized I'm there, and am trying to get the help I not only need, but deserve.

All my love. K 💖