Dread Turned Good With Positive Thought

I had a lovely day yesterday, which is quite strange considering I had to take an urgent trip up to Manchester, to the specialist unit at Salford Royal.

I have to admit that I woke up dreading the day ahead of me. I hauled myself off the sofa, where I’ve been sleeping for the past two months, knowing that the clinic I’d been called to on Monday would undoubtedly leave me feeling exhausted and sat myself at my set-up trolley (the place where I lay out my aseptic medical equipment in order to deal with my IV feeding line) and proceeded to get myself ‘unhooked’. All was going well until I had to flush the line through with saline, at which point the darned thing burst. Yes, it burst. Saline sprayed all over me and for a moment I sat there wondering what on earth had happened. Just as well I already had to go the hospital as that would definitely need dealing with pronto.

By this time I wasn’t feeling too upbeat about the day ahead. On the contrary, my mind was full of negative thoughts and the dread started to really build up in me. But I ‘pulled myself together’ and decided that thinking negatively wouldn’t help anything and would almost certainly make the day worse and that some positive thought was needed instead. I thought about how blessed I am to still be in a position to enjoy the things I’m still able to do - just 25 years ago they wouldn’t even have been able to save my life let alone keep me alive through artificial nutrition pumped directly into my blood.

Anyway, I got myself dressed for the first time since Boxing Day and although just doing that sapped my energy considerably (I’ve been suffering from lack of potassium, something that REALLY depletes your energy and can be life threatening) it felt good to be looking more or less normal again. I couldn’t have a bath or wash my hair though - the former because I can’t actually get in and out of the bath and the latter because I can’t get up the stairs to the bathroom anyway - so still felt I looked a bit bag ladyish but I’d just have to hope the neighbours didn’t see me and deal with it. In fact, when I checked in the mirror, my hair didn’t look tooooo bad considering, but it does need a bloody good cut.

Richard, with whom I’m now on talking terms but not in a sense where we’ll ever be a couple again, drove me to the hospital and just being out, seeing the world again, had me feeling as though I’d just escaped prison. It had been so long since I’d been out that I was actually starting to forget what ‘outside’ looked like. And although it was a rainy day that didn’t matter - even the rain looked and felt good.

Clinic went ok - there was a lot of waiting around as usual but we got chatting to a few other patients who suffer from the same condition as I do and although it’s sad that so many people have had their lives changed in this way, it does help to know that others are up against the same kind of problems and hear how they deal with things, or not, whatever the case may be.

I also had my line fixed. That was a fiddly job but the nurse was lovely and everything went as it should. My line’s a little longer now and will therefore be bulkier beneath my clothes but what the heck, it keeps me alive! That line is as important to me as my heart is.

Three hours after arriving we left the hospital again and headed back to Crewe and a pub where we knew we could grab a cheap but decent meal. Unfortunately, halfway through the meal my energy deserted me and I just wanted to go home. I started getting cold and I was shivering badly - always a sign that I need sleep - so we headed back to my house, Richard saw me in and picked up a few bits he’d left behind when we split, and I crawled back on to the sofa, pulled the duvet over me and slept soundly for three hours. I don’t even remember my daughter talking to me, I was out for the count within minutes.

When I woke again it was dark and I was alone. My daughter came down for a chat, then I read for a while, had a quick look on eBay and then settled myself down for the night. Again, I slept soundly until eight this morning.

Going out yesterday restored my faith in that I will get over this blip - I just need to keep exercising (I have a pedlar and dumbbells that I use daily to help build up my muscle mass again) and keep thinking positively.

My next goal is to visit the hairdresser and get a bit more self-esteem back. I’m hoping I’ll have done that by the end of the month.

Positive thought is powerful. Like attracts like so by thinking good thoughts we're more likely to attract good things into our lives making even the days we dread the most just that bit more bearable.

Sharon J xx

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A Friend, A Loss, A Lesson

A friend died recently. Not a close friend by any means but none the less a person who I probably knew better than many of those who saw her regularly. We were in hospital together five years ago, both having suffered a blood clot that had led to our bowels decaying inside us. It’s a condition experience by very few (thankfully) and thus rather unusual that we were both admitted at more or less the same time. Over the course of several months as in-patients, with our beds next to each other, we were taught how to deal with the major changes that would be necessary to continue to lead anything close to a normal life. We were very different personalities but even so, we developed a bond that was different to what I’ve had with anybody else. We shared something that, unless you have to live with this, you simply can’t truly understand. We shared our innermost thoughts and feelings, sometimes things we just wouldn’t normally talk about. Nothing was taboo.

One of the problems with being an IV feeder is that our immune systems are seriously compromised. A simple bug that most people can shake off in a matter or days - weeks at the most - can kill us. If that bug gets into the feeding line it can then get a foothold in the heart (the line goes into the subclavian artery) and from that point on there isn’t too much hope of survival. This is what happened to my friend.

She had the bug that was going around before Christmas. The same bug as I came back from Malta with. She was given anti-biotics and all seemed to be well but after a four or five days she started to feel poorly again. Her husband took her to their local hospital where she deteriorated quickly. She was then sent to the specialist unit in Manchester (where we first met) where her feeding line was removed but unfortunately it was too late for her. The virus had gone to her heart and although she was put on a heart machine, it didn’t help as other organs then started to shut down. First her kidneys, then her lungs. She died during the night. It all happened very quickly.

Her death has really brought it home to me just how lucky I’ve been. I’ve had two infections in my feeding line but both times they’ve caught it quick enough and I’ve pulled through. My heart hasn’t been damaged.

I’m still struggling with the aftermath of ‘the bug’ myself. It's left me feeling very weak and it’s taking a long time for me to regain any decent amount of stamina. But I’m alive. And for that I’m grateful.

One thing I’ve learned from this - and this is something that her husband said to me - was that avoiding doing what you want to do and never pushing yourself further than you should is no guarantee that you’ll last any longer. It’s better to go being glad that you did the things you did than regretting the things that you didn’t.

Sharon J xx

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Image Credt: knowhimonline

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