Thursday, 31 October 2013

What Happened?

Appologies to those who haven't heard, but I've been in hospital for the last week. I was very ill with a severe case of tonsillitis, and the doctors have taken a while to start to get ahead of the infection. I am, very slowly getting better., but I'm still unwell, I would say on average, I sleep for 10 hours a day. But over the next little while, I shall share this tale of woe with you all. I hope to write something tomorrow, but I will see how I, I think tomorrow is day 100 post transplant. But then again, I'm not cognitively awar enoughh to make  that judgment. We shall see.

Monday, 21 October 2013

Did Ya Miss Me?

It feels like it has been a long time since I've written any posts, well, it probably has been. Today is day 86 post transplant. The weeks seem to blur all together, but a few things have happened in that time. I moved house again, shortly after my last post and I'm settling in very well. 

Healthwise, things are progressing nicely, my blood results have generally been fine, although still struggling with the drinking two litres rule. However, I have had a few niggling issues. I've got a bit of a viral infection at the moment, nothing too serious as it does not need to be treated. Unfortunately, it has completely wiped me out; hence my lack of blog posts. Nothing too dramatic, just an ear infection accompanied by complete and utter exhausting; but generally, the symptoms are getting better although some days are better than others. Annoyingly, this has made the headaches worse, but they are currently under control at the moment. 

Inconveniently, my joints have decided to test my patience; left shoulder, right knee, I'm talking to you! They are very painful which is making mobility an issue, plus my left elbow is attempting to join the band  wagon. I must say, for those who cope with joint pain on a day to day basis; I take my hat off to you, you are a picture of endurance. To add to my list, I am getting skin pain over the back of my shoulders, back of my arms and palm of my hands. There is no rash to be seen, but I think I'm experience either neuropathic pain, similar to the episode a few months ago, or it is a mild form of Graft Versus Host Disease. The last minor inconvenience I'm experiencing, is an inability to control my radiating body temperature. I think I may be experiencing hot flushes but I'm not sure its severe enough to be classified as that; plus, it isn't apparent to other people because I don't turn red so its difficult to asses. Most of these symptoms which I've described haven't been reviewed by the doctor as of yet, however, after a despairing look from my pharmacist friend, I shall endeavour to tell them about it tomorrow.

I've just read the last paragraph back to myself and I've realised that it is quite a long list of ailments, but really, its not so bad; it would take quite a lot more than that to knock me off my perch. Pain is relative; I guess that's one of the silver lining blessings from this whole debacle, the smaller things don't bother me as much. But then again, the down side to that is that I'm less likely to tell the docs about them because I don't perceive them to be much of a problem.

So yeh, generally i'm in good spirits. As usual, the hospital visits are tiering but hopefully the frequency of them will reduce soon.

Saturday, 5 October 2013

Oh Little Star

Last night, out of nowhere, I had the sudden urge to pen this poem. Which was slightly untimely since this desire hit me square between the eyes at 11:30pm - I have strategically made this post public at a reasonable time of day so you will not know how late I stayed up. 

This experience was very strange and slightly bewildering. I picked up a pen and paper, which I never do anymore, and just started writing, I have absolutely no idea where it came from.  I have never been keen on poetry and I haven't written a single poem since I was at school. In fact, I'm not even sure I remember how to write poetry. I am completely dumbfounded at the fact I've written a poem. I'm sure there are a multitude of poetical errors present, but nevertheless, I hope you enjoy it.

Oh Little Star

Oh little star, why so downcast?
Shine your beauty so bright, surely that will last?
Oh little star, what have we here?
An arrow pierces your heart and fills you with fear

Oh little star, see how you fight!
Fight you will, with all of your might!
Many have come to put out your flame,
But guarded are you, by the Holy Name

Oh little star, this fight has begun,
And weary you seem, so nearly, nearly done,
Attack and attack you must face,
But there is One, who overcame all through Grace

There is One, no stranger to pain,
He gave His life, so today you may gain,
A little piece of Heaven, a life that is free,
Because of His love, your light will always be

Oh little star, you must decide,
To face these troubles on your own, or with Him by your side,
Oh little star, do count the cost,
For then you must carry, your own Cross

Silly little star! How black the night sky!
Your little light will surely die!
Match you are not, for darkness prevails!
Down, down, down you go through the deadly veil!

Oh little star how true that would be!
If Saviour you had not, who died for you and me!
Pain you will feel and suffering there will be,
But perish fear not, for Jesus claims Victory!

Oh little star, be not downcast,
The love you've been given, will forever last!
Oh little star, the day draws near,
When He will come, to wipe away every tear

Oh little star, what glorious day we shall see!
When home we go, and meet He that made us be,
And when we see Him face to face,
It will testify, that we were saved by Grace.

Friday, 4 October 2013


Today was clinic day and it is day 69 post transplant. The appointment was fine, nothing new to report, which at this stage, is a good thing. However, today was more draining because, once again, I didn't sleep well. I guess the strain of the whole experience is getting to me a bit at the moment.

Question. How do you kill an extrovert? Answer. Put them in isolation and then put them under house arrest. This week I've been struggling with motivation. You might ask, why do you need motivation when technically, you have nothing to do? Yes, well, I was under that same illusion, but as it transpires, when I lack motivation, I become depressed. It doesn't even have to be motivation for huge projects. Just little things like finish knitting the baby booties for niece number two, Ariabella Faith Gunarathne. Ariabella, which means prayerful, was born on Sunday 29th September 2013, surprisingly on her due date. Apparently, this one cries; it would seem they have got a real baby this time unlike Elliana Grace, meaning "God answers our prayers", who is so well behaved that she could pass for a doll! With regards to the booties, in my defence, even though it has taken me months to complete such a small item, I am now actually on my 4th bootie - the first one didn't look right, the second one was fine, the third one was fine until I sewed the cross over flaps the wrong way round which meant that I had two left booties; hence bootie number four.

It has been a week of mixed emotions, but things are maybe looking up? It's just frustrating that when I seem to be getting into the swing of things, something seems to knock me back again. But I guess its part of the process, its that good old bumpy road again. The Elders meeting for our church was held here last night. They where here for ages! Goodness knows what they were talking about. They wouldn't let me stay and chat for very long, something about avoiding crowds and not overdoing it, but I think the real reason was that they wanted to start playing monopoly - why else would a meeting go on for so long? Although, I would never say that to their faces for fear of not be able to run away quick enough...yet. I was so excited and happy to see everyone, I literally felt like an excited puppy! 

But once again, it was bittersweet. It reminded me of what it would have been like in biblical days when someone would get an infection and they would have to stay outside the camp so that it didn't spread. The only difference is that, this time, it is for my own protection. But even though I am blessed by people visiting, it is a lonely place to be. I hate not being involved. I never thought I would say this, but I hate not being able to go to church meetings - that's how desperate the situation has got! I just want to start living my life. In my head I know that my last statement is incorrect for a number of reasons but my heart doesn't believe them, maybe my heart doesn't want to believe them. But it's not long to go now; I have about a month left of my house arrest sentence, but there is still fear associated with the freedom that will follow. There is always the fear of infection, and the fear of developing Graft Vs Host disease once I come off the immunosuppressants. I feel so close to the end point, the point of safety, the point when I can say that this is all over; but at the same time these fears always seem to move the goalposts at the very last minute.

I have felt far from God this week; well further in comparison to the last nine months. I think its because I've been avoiding talking to Him about what is hurting me; I just don't want to cry anymore. It drains me completely and leaves me empty. I just want to be happy. I want to escape to a different world. It is a world where I am in control, where only good things happen to me, where I craft out my life. However, it is a world where God refuses to be present, or maybe I refuse Him entry, and that is always the part that kills the dream, that leaves me with despair, that brings me crashing back to this world full of pain and suffering, but with God. Something inside me hates to admit this, but it is much better and fulfilling to live a life of pain with God, than to create my own perfect world without Him. It always brings me back to the same place, I cannot live without Him, He is too important too me; when all is lost, He is still there and that is more than I can say for my "doll house" of a world. 

I know that I have been through much pain and grief over such a short period of time. I know that the only way to heal is to revisit these issues a little bit at a time over many years, because the pain is too intense to deal with in one shot. But each time an issue comes up, that I have grieved about before, I cant help but feel exhausted and a sense of failure. Once I have grieved, it always feels likes I've managed to complete a task, I've managed to tick a box. But it is not the case. 

When I was growing up and even into my earl twenties, I never dealt with any of the pain and grief I experienced because I didn't see the point; it wouldn't change the outcome. I just needed to put it away in a box and get on with things. I did myself a great disservice. What I didn't realise at the time was that I was not a machine with the soul purpose of achieving outcomes. I didn't know I was more than that. I didn't know that I was a person. I didn't know what I was worth in the eyes of my Creator. But, now that I know who I am in Christ and how much He loves me, everything has changed. Healing from the past and present is happening. I once didn't see the point of being healed, but I now know that I was living in shackles, I was owned by my grief and my circumstances. I never accepted that because I was under the illusion that I was in control of my life, I was able to keep spinning the plates without letting one drop. However, history tells a very different story. It tells of a lost, struggling, sorrowful little girl who convinced herself that everything was alright in order to survive because she didn't know that there was someone who could or wanted to save her from her pitiful existence. 

It is a painful business, healing is. I quite often set the agenda with God about things I want Him to heal in my life, but thankfully, He never agrees to it. He chooses the item, He chooses the time. Sometimes, the healing will happen after a horrid nightmare, sometimes it will happen through reading the Bible, and sometimes it will happen through a faithful friend who can see past my facade. But what ever way it happens, God is in control and there is no safer place to be than in the palm of His hands.