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Posts Tagged ‘tiredness’

I’m going to do one of those annoying looking back at the year posts, so you have been warned.

The year started with nagging. A lot of nagging. I had yet to book my yearly colonoscopy and I also hadn’t organised or sent out any invitation cards for the ¬†civil partnership.

Calling in some favours from friends got the latter sorted and a call to the docs sorted the former. Soon enough people had been invited and I had a camera shoved up my bum – Note: The people were invited to the civil partnership, not the colonoscopy. There are already too many people involved with that if you ask me.

Everything got sorted for the civil partnership and it all went well. We both had a great day and words can’t describe how happy I was with the whole thing. I know that the phrase ‘happiest day of my life’ is cliched, but it is true. I was with the person I love more than anything (even pizza) in front of family and friends. Couldn’t ask for more.

But health issues were starting to crop up. In the couple of weeks running up to the big day I had started getting really tired. Also, when I breathed deep I was getting this shooting pain across my stomach. This, coupled with some yellow tingeing in my eyes was slightly worrying. I popped along to my GPs and had they took some blood to be tested.

They warned me that I could need to go into hospital but there was no chance I was missing our big day. On the Monday after the main event I got a call from the doctors saying that my bloods were much higher than expected and that I needed another blood test to see if that was just an error or random peek.

In the following week I had the new test – it was even higher – got more tired and left work early for the first time in my life. I was also starting to feel very sick all the time. I passed the blood results on to my specilists at the JR in Oxford. That night they phoned me and ordered me into the hospital straight away. They wanted me in that night.

I went, reluctantly, the following lunchtime as I had some work that I needed to do.

Form this point, things went down hill. I started to get yellow, got more ill and started losing weight rapidly. I also started itching, although this wasn’t as bad as it could have been.

In the first 6 weeks of my married life I spent half of the time in hospital.

I had many, many, many tests in the following months, eventually being told that I needed a transplant and the process for assessment was started. Unfortunatly, by the time I got to the assessment my health had improved and I have not been placed on the list.

But, and this is a big but, that paragraph above really doesn’t describe what it was like. I went from feeling fine at the beginning of May through five months of feeling very, very, very ill. Looking back, it feels like half of this year has been stolen from me.

But, since then, my health has improved. I am not perfect, I still get very tired and have pain, but I am heading back to work.

I have carried on with my ‘fun’ work. I am working on a second series of Supermarket Matters and we even managed to write and record two holiday specials Grab’n’Go-Ho-Ho and Ayld Lang Syne. Check them out on:

I also managed to get a chance to get on stage and do some stand up. It was an awesome experience and I have another gig coming up to try and take what I have and actually make it funny.

Now, you may be thinking that I have had rather a crap year. But no. Honestly. That one day – the day where I got civilised (it’s not ‘marriage’ as, y’know, the Government don’t like gays that much) – makes up for and far surpasses all the bad. I can honestly say, that even though a fair amount of bad stuff has happened this year, this is still the best year of my life because of that one day.

It may sound soppy. But it’s true.

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If I had to describe the one main feeling that I have at the moment it would be the overwhelming sense of ‘limbo’ that I feel. I don’t seem to be in one camp or the other about anything. A couple of examples of this are below:

The list and my health

This seems to be the biggest source for limbo at the moment. There is the big question of ‘Will I get put on the list or not?’ As I am unsure of the whole process of how this decision is reached I feel powerless – I am really one of those people who needs to know as much as they can about something that impacts their life.

I was very ill for four months. I was very yellow and I couldn’t eat without wanting to vomit. I got very tired very easily and I was incredibly itchy (although the itch was controlled by some medication). Now, I am still ill, but not to the same extent. I am only yellow in the very corners of my eyes now and can eat without feeling like I want to puke. However I still have bouts of feeling itchy – for example, this morning it was driving me nuts – and I still get very tired. There is also now this constant pain coming from my liver, like something inside me trying to push its way out.

Now, will the doctors look at me and go, ‘Right now you aren’t as bad as you were, therefore you don’t need to be on the list’. Or will they look at me and go, ‘While right not you aren’t as bad as you were, we know that it is impacting your life – you can’t work full-time and so on – and we have some very lovely pictures of your insides which show how bad they are. We’ll put you on the list now as from this point on, you will only get worse.’

I just don’t know.

From my personal point of view, I think I would rather be on the list, even if I was put on at the very bottom. That way if there is a liver that would suit me and no one else it would at least go to me rather than get incinerated. This year has been mostly horrible because of my stupid liver. I haven’t been able to go on my honeymoon, I have had to miss lots of work, I have had to rely on the other half to keep us afloat financially, I have been so ill and so on and so on – and the list does go on. I want a new start and I can’t see that happening when most days I get tired very early and all day every day I have this pain in my back where my liver sits.

Work

I like working. I like being around people. I want to go back to work.

While I know that a full-time job would be out of the question, I think that I could work part-time. Maybe starting with a couple of days a week and seeing where we can go from there. But, I don’t know for certain that I would be okay. This is a guess. This is something that I will have to test out with support from my workplace.

So not only am I in limbo on how much work I can actually take on, I know that I can’t go back to my old role. My old role was a line manager of an editorial team. At the moment, they have an acting manager who is doing a brilliant job. I can’t do this role part time. No one can. So, there is a limbo feeling about what I would be doing if I returned to work.

There is also another limbo feeling around what would happen if my health started to get even worse. Working part time would probably allow me to stay working longer than if I were working full time as I would be able to rest longer between stints in work. But I am also really bad at taking time off work when I need it. I know there were times before I went on long term sick where I should have been at home but I went in anyway.

And then there is the element of what projects I could work on. It would need to be something that could be dropped or handed over to someone else at short notice – which is generally not why I am employed. My skills centre around social media, web accessibility, usability and production organisation and management. These are skills that are very rarely located in more than one person at an organisation. Companies don’t tend to have a ‘web and production optimisation’ team.

So there is a triple limbo feeling here: Am I able to return to work, what would I do at work if I went there, what would happen if my health started to get worse?

My writing

I love my writing. Those who know me should know that I like to write – generally funny things but I also have a soft spot for sci-fi. If you follow me on Twitter – or even in real life – you will know that I already have issues with self-confidence when it comes to my writing (possibly even self-confidence in general – but that is a whole other blog post).

Being off work ill has allowed me to spend some time on my writing. I have rediscovered how much I really do love it. So much so that it is all I really want to do – well, maybe that’s a slight lie. It’s something that I really want to be paid to do.

The limbo comes in here that before getting paid to write you have to put in a lot of unpaid hours, get noticed, work for free, do well and then work for very little. If you manage to go through all those stages you may end up as the very very small percentage that get paid a decent wad of cash to write. I am still in the very early stages of this. Writing for free.

If I get better (spontaneously – ha ha – or through having a transplant) I would rather spend my time writing than working the normal 9-5.

I guess, either way – me staying very ill and writing or me going back to work and writing in my spare time – I have to generate interest in what I am doing. So here it goes, if you didn’t know, I have created an online podcasted sitcom. It is 8 episodes long and very funny. I produced and edited the show and wrote two of the episodes. The other 6 episodes were written by some very funny friends of mine and it was all acted by some amazingly talented people. Why not give it a listen?

You can listen to it through:

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Monday 31 October – the day I’ve been waiting 4 months for. I was going for the first part of my liver transplant assessment. So, letter in hand, I drove the the Queen Elizabeth Hospital in Birmingham for a day of poking and prodding. The day went as follows:

8:45am: Arrive and relax

I had made it in time. My husband and I stopped in the Costa cafe for him to have a coffee and a scone. I was far too nervous to eat or drink anything.

9:30am: Report to the imaging centre

Tests

  • Liver ultrasound
  • Chest x-ray

I was directed to a waiting room and did what everyone does at hospital: Wait to be called. I thought I was just here for a chest x-ray, but I was told when I reported to reception that I was to have a liver ultrasound as well.

The liver ultrasound was first. These are easy. Just lie there while a lady rubs cold gel on you. I was told that even though I had eaten breakfast (something I apparently shouldn’t have done although no one told me) that my bile ducts were not as dilated as she would have expected. This fits with my PSC diagnosis as that would have made them smaller.

She also mentioned that the surface of my liver was slightly rougher than it should be – suggesting that there has been irreversible damage to it (which is expected at this stage).

After this it was the chest x-ray. This was even easier. Take off my top and stand in front of a square on the wall. No problems.

10:45am: Report to the transplant coordinator

Tests

  • Pee in a pot

Here I met the lovely Ann, one of the Liver Transplant Coordinators working at the hospital. She passed me a pot to piss in – literally – and asked me to wait for a while. They were currently assessing another potential transplant patient and would be with me as soon as they could.

It seems that they take groups of people through the assessment process at the same time.

11:15am: My turn to be assessed

Tests

  • Blood pressure
  • Pule and oxygen levels
  • Height
  • Weight
  • Girth
  • MRSA swabs
  • Ward spirometry
  • Blood tests

This bit took a fair amount of time, just because of the shear amount of tests to get through.

The only tests of note were the following:

The blood tests – Now, I am use to giving blood samples;¬† just not on this scale. They took 17 vials of blood. It would’ve been 18 but the nurse who was seeking people to take part in a study had wandered off. Here’s a picture of my ‘blood tray’ before they took anything from me. Look at all the vials:

Look at all the blood samples I had to give!

MRSA swabs – These were odd because they were self-adminsiteded. I was handed three long swabs one at a time and had to swipe the insides of my nose, the back of my throat and my groin. Very odd.

Ward spirometry – This is a test to see how well my lungs are functioning. It was easy, if a little weird. I had to take a deep breath and then blow on a tube as fast and hard as I could while the nurse shouted, ‘Blow, blow, blow’. Even when I thought there was no more breath in me, I was still being shouted at for more. A little device then drew a graph of my lung function. I did this three times in total.

11:45am: A group chat with the transplant coordinator

The lovely Ann sat down with us and went though what was left to happen on the day and why we were there. She was happy to answer any questions about any part of the process. She gave us each a 80 page transplant document. Essentially it is an ‘all you need to know’ document for us to refer to. Or, as I like to think of it, An Idiots Guide to Liver Transplants. It even has diagrams:

Diagram of a patient in Critical Care Unit after a liver transplant.

Noon: Private chat with the transplant coordinator

This was the coordinators chance to ask me any additional questions she needed to for her files. I confirmed that I only had one other horrible disease – my Inflammatory Bowel Disease.

She also asked me what had brought me there, so I went though all my symptoms with her. Listed out they sounded really pathetic:

  • Huge tiredness
  • Going yellow
  • Itching
  • Spending 80% of the day nauseous
  • Huge weight loss (4 stone in 2 months)

As a list it doesn’t look that bad – especially if you add in that in the past three weeks the last four of them have mostly gone away (although I can feel them coming back again today).

Annoyingly, I completely forgot to mention the pain that I get. I had to go back afterwards to mention that. How clever am I? Forgetting a whole symptom.

The coordinator also took my husbands details and confirmed with him that he would be my primary carer after the transplant. He will need to take some time off of work to care for me when I get home after the transplant – at first anyway. I’ll be able to mostly look after myself, but will need someone around just in case.

He said he would do this – this made me happy.

My parents are also listed as other people that we can rely upon if needed. The coordinator suggested that my husband will need a break from caring for me at some point – so it looks like I’ll go visit my parents and he can go visit his or something like that.

12:20pm – 1:30pm: Lunch

Yum yum yum. Having not eating a very big breakfast I was actually very hungry. We headed to the hospitals very posh new restaurant. I had a cheese burger which was cooked in front of me; and I had chips. I even managed to nearly eat it all too.

1:30pm – 2:00pm: A quick regroup with the transplant coordinator and a short trip

We met with the coordinator again who told us that we were going off for two more tests and then we were done. Wooo! One of the nurses led us to the cardiology department.

2:00pm – 2:40pm: Cardiology

Tests

  • Electrocardiogram
  • Echocardiogram

Luckily I was the first of the three transplant people to have these tests. Nice bit of luck there. First I had the echocardiogram – kind of like a ultrasound of the heart.

Echocardiogram – This was probably my lest favourite of all the tests. I had to sit in this really awkward position for about 20 minutes. While I was quietly cursing my legs for being so cumbersome the echocardiologist attached some electrodes to my back and then essentially hugged me while pushing the ultrasound device into my chest. Apparently she was checking the structure and health of my heart which was done through her being able to see what was happening inside it and also switching on the sound so she could her the blood flow through the valves.

Electrocardiogram – This was by far the easiest test. Lie on a table, have cables stuck to you, wait 20 seconds, take cables off. All done and dusted. They gave me the printout of my heart beat and sent me to deliver this back to the transplant coordinator.

Interestingly, I seem to have a slightly weird heart. I have what is called ‘saddling’ which – I think – is where one of my heart chambers doesn’t empty completely on each beat. On the print out this shows as one of the lines not returning all the way to the baseline, instead it swoops down and then up into the other beat making a ‘saddle’ shape. I explained that two other doctors have noticed this and it is considered ‘normal for me’, which seems to be about as normal as I get.

3:00pm – Home time

Well, escape from the hospital at least. My husband and I took the chance to go see some friends who had recently had a baby. It made for a lovely afternoon.

More assessment fun

I still have two days of the assessment to go before I find out if I have made the list or not. These are likely to happen on 15 and 16 November. These days, from my understanding, will be my chance to meet the whole of the transplant team and also meet some people who have been through the transplant already.

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So, a while ago, a who-I-expect-is-lovely lady called Christine came up with the Spoon Theory as a way of explaining her long term illness to her friend. She had chronic fatigue and used a finite number of spoons to explain the process of only being able to do so much. If you want to read about it, you can on her site: butyoudontlooksick.com

Now this system has been adopted by lots of people – in fact, anyone suffering from long-term fatigue will have heard of this and may even use it.

There is even the #spoonie tag on twitter.

But, you know what? I hate this idea. I really really do. The whole ‘theory’ (a word which I believe is much overused anyway) relies on the basic premise that each spoon is a portion of your energy for the day.

But what is so difficult about the idea that I have less energy than you? What is so difficult about explaining that I can only do this or that before I need to rest? The answer is nothing. The whole spoon concept just plays into the hands of those who think because I am ill I am also thick.

The whole idea of ‘spoons’, gah! It’s like something you would say to a child to help explain it to them. And the idea that the cronically sick have taken this on as a badge just sets up a whole set of ideas which will equate sick people with the inteligence of children.

It sets up the idea that I have the mind of a child.

Oh, poor Mark. He is so ill, but the only way he can understand this is by a silly little metaphor using spoons. Bless him.

I am not stupid. I am just ill.

Honestly, I beg all of you that use the idea of spoons to really think about what you are saying about yourself and others who are ill.

You have less energy. Explain it like that. Don’t belittle the person you are speaking to or yourself by resorting to the pathetic idea of spoons.

Go on, look at the hash tag again: #spoonie Really look at it and tell me that it is empowering? Go on, just try.

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As regular readers of this blog (read people I force into reading this) you will know that I mainly use this as a method for clearing out what’s in my head. If I don’t write some things down they just run around and around in my head and slowly drive me insane. I think this is where the idea of me wanting to be a writer comes from. In reality, maybe I don’t want to be a writer; maybe I’m just seeking the peace that comes when you’ve got something out of your head.

And now, with that last line I have a whole new string of ideas spinning around in my head about the nature of my writing process. I’m sure they will work its way out as a blog post at some point. But that’s not what this one is about.

  • How do you measure your worth as a person?
  • How do you know when you are being useful in your life to others?

For some people these are really hard-to-answer, deep questions. Not so for me. I figured them both out at about the age of 13 when I was just starting the final two years of my GCSEs. Basically it goes like this:

I both have ‘worth’ and ‘use’ if the following conditions are met:

  1. I’m in a job where I feel that I’m doing some good to someone else somewhere. The more good I feel this job has the more ‘useful’ I feel. This explains, for those who are interested, my choice in jobs: The charity and education sector.
  2. I’m getting paid what I feel is a reasonable amount of money. The more money I get paid the more ‘worth’ I feel I have.
  3. The above two are augmented by how well I’m doing compared to my ‘benchmarks’. Throughout my life I have met people – some I like and some I don’t – whom I judge myself against. So the ‘usefulness’ I feel in point 1 can be boosted or reduced if one of my benchmarks has a job that I feel is more ‘useful’ than mine. Same with salary in point 2.

Now, this may make me shallow. And I can understand why people think that. But this system has worked for me. It’s what makes me strive forward; there are always more ways to help and there’s always more money to be made. Plus, I have to keep up with my ‘benchmarks’ – can’t have them outdoing me.

I know that the more I work – the harder I work – the more I help other people. The harder I work, the more money I get and the more worthwhile I feel. I can provide for my family and friends.

Now this is becoming a problem with my current situation. I am not at work…

…and it’s killing me.

I know that I still technically have the role – but it’s not me there doing it. I’m not doing something which is of use to people. I’m not doing anything. So, at the moment, while I am not working, I am not useful.

Also, because I’m off on long-term sick, quite rightly, I’m not being paid my full wage any more. In fact in the next couple of weeks I will drop from half-pay down to nothing. In my eyes, my ‘worth’ is being reduced to nothing.

Then bring in my benchmarks. As I said, some of them are people that I like – some are very close friends – and I’m happy for them. They have great jobs in which they do great work. Seriously, I would employ them without question. But that doesn’t stop a part of me measuring myself against them. Right now, they’re amazing… and I’m not.

Some of my ‘benchmarks’ are people I don’t like… And this is worse. I measure myself against these people who I don’t think are worth much and I’m lacking… I’m below zero.

I don’t see a way to fix this short of throwing out the system which defines me as a person. And even if I did throw it out, I’d need something to replace it with.

Part of me thinks it would be better to push myself even more. Go back to work. Get out of bed, use energy drinks, go to work, sleep as soon as I get in. This would give me all three of my points back. I would have both ‘worth’ and ‘use’. But what would this do to my health?

However, there is an argument that me getting worse is not always a bad thing. As it stands I’m not a priority transplant case – or at least, when I get listed I won’t be. If I make myself more ill, I could push myself up the list.

And ultimately, wouldn’t that be a good thing?

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At the moment, when it comes to PSC I seem to be one of the luckier ones. I am ‘symptom free’ in the sense that I have no mind-numbing itching and I am not particularly yellow.

However, one thing I do seem to have is tiredness.

I’ve had to think very hard about posting this here. Basically, I wanted to make sure that I wasn’t just making this up, or that the tiredness wasn’t related to something else.

I have had it since about September:

  • Firstly I put it down to jet-lag, as in September I both traveled to and came back from the US.
  • Then I put it down to a cold.
  • Then to not having been to the gym for a while.
  • Then to not having enough vitamins.
  • Then to having my seasonal flu jab followed by my swine flu jab.

Now, I am out of options and it seems to be getting worse.

I find getting up in the mornings even harder than I did when I was a teenager. By midday I am so tired my eyes sting every time I blink.

And what’s worse, sugar drinks – such as my beloved Dr Pepper – only take the edge off, they don’t wake me up fully.

To be honest, I am not 100% such as to the reason of this post. There is no amusing anecdote to get you smiling; I don’t even have a cheap dirty joke to get a quick laugh.

I guess this is more about just ordering my thoughts. A way of analysing what has been rumbling around in my head for a while.

Though, of course, I am open to suggestions on how I can improve my wakefulness.

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