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Posts Tagged ‘symptoms’

I really don’t have any other way of describing how I feel at the moment other than anger. Which is a very unusual sensation for me. In fact, I can’t ever remember being angry before. I have been frustrated, which is similar, but I don’t think I have ever been angry in my life until now.

I think this is mainly due to me being a fairly easy going person – or I at least hope I am.

I’m finding it hard to describe in words what this feels like: It’s like there there is both this need to curl up into a tight little ball and explode at the same time. I want to be both taut and loose. Hard and soft. But none of that is achievable.

‘What am I angry about?’ you may ask.

Well, it sounds very teen-angsty, but life. I am angry about what happened last year. I am angry that I had to feel that way. I am angry that I had to stop work. I am angry that I still feel bad. I am angry about everything to do with it.

I had plans. Maybe not hugely grand ones, but plans nonetheless. Onwards and upwards – both career-wise and life-wise. Get a house, do it up, eco it all out. Go on a honeymoon. But that’s all gone out the window now.

I am trying my best to recreate some new plans. To take my life in a new exciting direction but everything is marred by this ‘possibility’ hanging over me. And it just pisses me off.

I’m not going to go into my new plans here. I will one day. Promise. Those who know me fairly well probably have a good idea. But right now they are scared little plans, they need to be nurtured before they are ready to stand up to the gaze of everyone else.

So, I’ll go back to sitting at my computer screen, trying to plough on with some work while trying to work my way though this new emotion.

Any advice is appreciated.

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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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I wandered back up to the hospital on Tuesday 15 November for the first day of the second part of my assessment. I didn’t have a lot of information about what would be happening, mainly because I didn’t know if any further investigations were needed as indicated by all the tests that happened on the first part of my transplant assessment.

I got there at 9am again and Joe had a coffee and scone – this seems to be quickly becoming a tradition. At 9:30am we made our way back to to the transplant assessment area where we met a different transplant coordinator to last time. I can’t remember her name but she was a lovely as Ann. In fact, my experiences with this person and Ann have shown me that I don’t need to worry about contacting them with anything. They all seem lovely.

This part of the assessment also had two other people undergoing it at the same time as me, but they were different people to who I had been through the first part with. Joe and I sat down with them and got chatting. They were all lovely people.

The coordinator explained the order of the day. She was going to do some transplant education with us and then we would meet the surgeon. Then, following lunch, we would meet with a consultant hepatologist. The point of these interviews were to allow the consultants to get any information they needed from us and then to give their professional opinion as to whether we should go ahead with putting me on the list.

All of the information would be taken to a transplant group meeting and discussed and then the whole team would come to a conclusion as to whether to add me to the list or not and if so where on the list I should be placed.

The transplant education was really interesting. I am happy that I have the mental ability to distance myself from pretty much anything as some of the information was very frank and scary. Lots of talk about what actually happens in the surgery and possible side effects.

It was good to have someone to talk to who had obviously taken a lot of patients through the process from beginning to end.

After this I went in to see the surgeon. This is where it all started to get interesting for me. The surgeon said that he did not think that currently I was a candidate for transplant. It was his opinion that it was too soon to be considering me for this.

He mentioned my UKELD score, which is a calculation they do on some blood test results. You can be added to the transplant list when your score is above 49. Mine was currently 44. It is possible to be added to the list with a score lower than 49, but this has to be fought for by various people. The surgeon explained that a score of 44 was fairly normal for any adult.

I asked him about my results from when I was first referred, he said that my UKELD then was well above 49 – I believe he said it was 56. To put that in some perspective, the boundary to be placed on the higher priority list is 54. It was commented that if my last two blood tests didn’t have my name on them he wouldn’t believe they were from the same person.

I left the meeting with the surgeon with him stating that he wasn’t going to vote yes to having me put on the list.

I went for lunch after this and talked through everything with Joe. I felt very odd having been very ill for 4–5 months of this year and having been told by multiple doctors that I needed a new liver that all of a sudden now I didn’t.

Joe and I agreed that no matter what happened we would try to see this as a positive.

After food (which I got a voucher for – wooo!) we went back up to the transplant assessment area and waited to see the consultant hepatologist. Luckily this was going to be the wonderful Dr Ferguson. The surgeon had told us that Dr Ferguson and him sometimes disagree on when to add people to the list, so I was interested to see what he would say.

Dr Ferguson agreed with the surgeon. It seems that I have recovered to such an extent that at the moment the risks of a liver transplant do not outweigh the benefits for me. Although it was pointed out that I still have advanced PSC and my liver has been damaged. It is now a question of when, not if, I get added to the list.

He did admit that this does leave me in a limbo state as I do have some symptoms and will continue to have them but I am not ill enough to get the one treatment. I went through what I was experiencing with him and unfortunately there is nothing they can do about the pain I feel (which is fairly constant now) or about the tiredness. I just need to deal with these myself.

He did say that as I have recovered that I am able to do as much work as I feel I can. I am looking forward to getting back to work, maybe working part time and seeing how many hours I can cope with without just falling asleep.

The way he explained what had happened to me was that in an autoimmune disease the immune system does not attack constantly. Something – no one knows what – triggers an attack and then something else – again, no one knows – tells the immune system to stop. While my liver was being attacked I got really ill. Now that it has stopped I am weaker than I was before it all happened but the worst of it is over.

The way I like to think of it is as if it were a tidal process. When the waves come in, I am very ill and damage is being done. When the tides go out I am left worse for wear but better overall.

I now just get to wait for the next wave, which could come tomorrow or in 10 years time. I just have to wait and see.

It was agreed that I should finish the assessment and come back for the final day on Wednesday. This would mean that if I got ill again within the next 6 months I wouldn’t have to go through the process again.

So, Joe and I went home that night knowing for certain that I wasn’t going to be added to the list. A lot of information was swimming around in my head which was causing a lot of mixed feelings. In some ways I felt upset, in others I felt happy. Mainly though, I felt tired. So home to sleep it was.

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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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