As I am writing this post, my mindset and body is in a confused state.

I feel both unwell and well at the same time.

Let me explain… The last couple of days the symptoms of my condition has increased. I feel more nauseous than usual. And I have a bit more pain than usual.

Before you say anything.. No I haven’t got the coronavirus that’s going around😂

I know this is just me having a “bad spell” because I’ve had it numerous times before. Fortunately a bad spell for me is now a rare thing and only really happens once every few months, if that.

Anyway, so though these symptoms have increased, they seem to be coming and going in waves.

One minute I feel fine and the next I feel absolutely rubbish.

My body and mindset is telling me to rest up but at the same time it’s telling me to keep going. I feel like I can carry on but at the same time my body feels tired.

It’s frustrating. I want my body to decide how it wants to make me feel. Either unwell or well (more hoping for the latter!)

At least I know for sure that within a couple of days I should be back to my normal self. But in the mean time I just need to grin and bare it. I’m trying to still live as normal life as possible. However, due to my symptoms making me feel tired I am respecting that and slowing down a little with what I do!

So if anyone sees me in the next few days living about my life but taking things slow and taking the odd breaks. I’m not being lazy. I just need to slow down a little to let my body recover from the battles that my condition throws at me! 😂😊

It’s important to trust your own instinct. That gut feeling you get about someone or something.

Recently I’ve been doing that. Particularly with my health. Any worries that I’ve been having, no matter what it is or how minor it is, I’ve been making sure I get it checked out. It’s so far been all minor things with nothing to worry about which is good.

But I’m still glad I got checked out when I did.

I learnt the hard way though. Years ago, 2 years or so before I got seriously unwell, I began having slight pains and aches in my stomach. I tried going about my life normally but deep down I knew something wasn’t right. I did kind of mention it to my consultant and parents at the time but I felt bad about wasting their time so didn’t mention it in the right way and certainly didn’t go into detail. I basically made the pain sound like a dull ache that was basically nothing. I didn’t really trust my instinct to be fair. And I told them I could cope. So nothing was done.

But deep down, something wasn’t right and a few years later we found out why. Looking back now, I can see that the pain I was getting was most likely due to the fact my stomach was growing unusually large and my organs were slowly moving with it.

Now I’m not saying that if I said something a lot sooner and trusted my gut instinct, my condition would have been sorted quicker. But something could have been done sooner, even just tests maybe.

I wish now that I listened to what my body was telling me. But I’ve learnt from my mistake.

I haven’t got a Picc Line now, but I did have one for quite a while a few years ago. I thought I’d do a chapter on my experiences of having one. How I coped with it. The care that was needed. That sort of thing.

Let me start off by explaining what a Picc Line is, in my own words.

A Picc Line is a small, long tube that is inserted into normally your arm. The tube inserts into your arm, particularly into a large vein that carries blood into the heart. The tube runs up the arm, and towards your heart. It is designed for long-term IV use (so if a patient needed regular IV antibiotics, or needed blood taken regularly)

I had it for those things, but also for nutrition. When I was really poorly and was an inpatient in both Kings and my local hospital, I was connected up to a machine that pumped this particular liquid into me that had all the nutrients I needed in it. This was called TPN (Total Parental Nutrition). The reason I was having this was because I had a lot of trouble physically eating and was barely keeping anything down. They needed to get nutrients into me and this was the only way. It meant long stays in hospital and frequent visits to the hospital when I was allowed home.

When I was allowed home, I still had the Picc Line inserted as doctors knew I’d need it again at some point. Luckily a Picc Line is designed for long term use and can stay inserted for as long as it needs to be in. Some people have a Picc Line for life.

I was a bit nervous about being at home, and leading a normalish life with the Picc Line. What if I knock it? What if something goes wrong and I lose blood or something? It was scary but I eventually got used to it. It also helped knowing that I had a community nurse who was on the end of the phone whenever I needed her. She also came round once a week to flush the line to make sure it was clean and wasn’t blocked.

It wasn’t pretty looking and so I had a bandage around it most of the time. That was also for protection. Luckily, it was in an area that I could easily cover it up too. I could just wear long-sleeved clothing to hide it.

It was also itchy from time to time. This is because the dressing that was put on it stuck firmly to my skin to keep it in place. This made my skin underneath extremely dry and uncomfortable. This was probably the worst part of having a Picc Line thinking about it. Although… There was a slight benefit to this. Every week, when my nurse came round to flush the line, she’d also change the dressing. When she’d take the old dressing off, she’d get this little cleaning device. It was basically like a small, wet sponge. She gently massaged my dry skin to clean it before applying a new dressing. Omg it felt so good!! I didn’t want her to stop😂. I kind of miss that feeling😂

After she’d finish cleaning, she’d apply a new dressing and a new bandage. And that was that.

I never really had any trouble with the Picc Line. It was pretty useful at the time. It meant that anytime I had to go to hospital, I didn’t have to have a cannula inserted to be put on a drip or have medicine injected into me – they just used the Picc Line!

However there was one occasion where it failed when the nurse came to my house to flush it. It was also starting to make its way out for some reason. The nurse tried pushing it in a little and also went to do her thing, got a syringe and began pushing to flush, but the syringe would be stiff and wouldn’t push the water through. She tried multiple times and checked the tube that was showing. Nothing was working.

She came to the conclusion that it probably had to be taken out. But she couldn’t do so without the permission from my consultant. She tried contacting him but had no success. We waited a little while but eventually she said “I’m going to have to take it out”. So she began gently pulling it out of my arm. My parents looked a bit worried and were probably thinking I was scared too. But I breaked the tension by causing a little bit of laughter. It was all quiet as my nurse was gently pulling it out. I looked down and thought it looked like a ‘magic trick’ that a clown does. You know, the one where he pulls multiple tissues/napkins out of his sleeve and it seems never ending. That one. So she was pulling the tube in my arm and I started going “duh duh duddah duddah duh duh duh” (the clown theme if you know it😂). Everyone laughed. It really helped what was a stressful situation for all of us in the room.

Here are some awkward photos of me with my Picc Line in🙈😂