I’m allowed a little moan now and again aren’t I?

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Wednesday 26th Feb 2pm – I am sat writing this from a medical assessment ward where I am waiting to see if the latest tablets I have been prescribed are going to provide me with any lovely side effects. These new tablets are (hopefully) to relieve the uncontrollable and constant itching I am currently experiencing, if I don’t experience any side effects over the next two hours I can try the tablets long term with the hope that they get rid of the demon that is itching!
I’ve had a full day at the hospital today. Dad and I arrived at Derriford at 8am in time for my MRI scan. After my scan we had a bit of a wait (which obviously had to include a breakfast feast) before my hepatology clinic appointment. As usual, we sat down with the doctor and talked through my current state of health. I had a cholangitis attack about 3 weeks ago due to me running out of antibiotics (slapped wrist for me)! Nasty things those cholangitis attacks. On the night it happened I went to bed feeling much itchier than usual, to the point where I was nearly in tears. I was aching all over, restless and had constant pain in my upper right side. I was awake half the night with a fever and chills and I knew exactly what it was. My super fairy godmother, Katie (also referred to as my transplant nurse) got some antibiotics sorted for me the next day which calmed things down and got the infection under control. This bout of cholangitis left me feeling like I’d been hit by a bus for about 5 days and it seems the remains of it is still clinging on now because since this happened I have been feeling so tired and weak and I just can’t seem to shake it. As well as all my usual symptoms being in full bloom and doing their best to make me feel like a haggard old woman, I seem to have developed a new symptom too…Aches and pains in my muscles and joints! I have experienced the delights of this on and off in the past but currently it is bothering me every day, some days it’s more painful than others. It makes getting up and down, moving around and sitting in one position for too long all very strenuous and painful tasks. So now I don’t just feel like a haggard old woman, I feel like a haggard old woman who also needs a Zimmer frame.
I told the doctor about all of this and let her know that I feel much worse since the last episode of cholangitis. A couple extra blood tests have been done to check that things like calcium, vitamin levels etc are all okay because if they’re not this could be the reason for the aches and pains. I also have to go for an iron infusion at my local hospital next week because I’m anaemic again, this will be adding to my fatigue so I’m hoping once that’s done I might start feeling a bit better again so that things like going out for a walk isn’t a mammoth task, just a small one that can be accomplished with a bit of determination. I’m hoping to try swimming as well because all my muscles have gone. Just disappeared! I’m really not used to having NO muscle whatsoever, it’s really displeasing and every time I look at my body now I’m just reminded about how weak it is and how much everything has changed. I’m hoping swimming will help gradually build up some muscle again, even just a little bit. A bit of gentle exercise might also help ease the aches and pains a bit. Fingers crossed!
My liver function tests from last month show no deterioration from the previous month, my liver is still chugging along and functioning as best as it can. This is good news, I should be really happy and grateful about that but part of me is not. Part of me is bitter and angry. Why am I so symptomatic? Liver, why are you giving me so much grief but telling the doctors that you’re doing alright? I feel like it’s tormenting me and I feel a bit cheated. I have all these symptoms that I have to battle so hard against day in and day out, yet on paper it looks as though my liver is being well behaved and doing it’s job. It’s like the kid in school who is really mean to everyone, making the other kids lives hell but gets top marks in exams and acts really well behaved in front of the teacher. Everyone hates that kid.
I know how moany and ungrateful I sound and believe me I do not enjoy this bitter frame of mind. Of course under this surface layer of twisted bitterness and irrational thinking are a multitude of grateful, positive, ‘thank the universe I’m not dying’ layers. Of course I’m extremely happy that my liver is still doing it’s job to some degree and isn’t failing completely just yet, but I am just so frustrated. So frustrated of feeling like crap every day and having to push myself so hard just to do basic things like get ready and walk out the door! I’m frustrated of having to figure out what each niggle in my body is trying to tell me, trying to figure out what is causing it, where it’s coming from, if it warrants me having to worry or do something about it and so on. Don’t get me wrong, I’m still positive and I’m still in good spirits (I realise I seem anything but that right now). I still get up, put my war paint on, smile, go out and tell everyone I’m fine. I enjoy everything I get to do, even if it is a struggle because that’s who I am and that’s what I do but I am tired and I am frustrated. I feel bad for moaning and complaining because I am constantly aware of how much worse everything could be but when you’re so tired and run down and trying your best to be your usual self even when you feel so far away from that person, it is hard to be ‘chirpy’ 24/7. I made a promise to myself a long time ago to stay positive throughout all of this, even during the really tough times when all I want to do is scream, because I know that positivity and hope is what will get me through and it is the only way I know how to be. However, I have decided not to punish myself when I’m having a bad day. I have to remind myself that it’s okay to have a little moan now and again when it all just feels like too much, I’m only human after all! As long as I don’t get wrapped up in the negativity of it all and just let it subside once it’s served it’s purpose then that’s okay. I refuse to let any of this make my life or any part of it miserable. I can’t change the situation I’m in. It is what it is. But I can change how it affects my happiness.
I have no control over how much of my physical strength PSC can take away from me but I do have control over how much it takes from my mental strength. So for now, I am happy to let my mind be my strongest tool.

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One thought on “I’m allowed a little moan now and again aren’t I?

  1. Heyyyy, sorry to hear you’re feeling a bit rotten at the moment – I hope it’s just a blip and it passes soon…you are more than allowed a bit of a vent at PSC every now and then (in fact I’d probably encourage it!) I’m always here to go halves on a joint vent if you need it too by the way…behind closed doors, my ranting technique is like that of a true pro!

    I had an iron infusion a few weeks back and it did give me a little ‘lift’ (well it was either that or the after effects of Christmas!) so hoping it does the same to you. As for itching, I’ve tried cholestyramine which is like a vile chalky powder which floats on top of juice (mmmmmm….!!!) but seems to do the trick, especially when combined with the piriton type tablets (although I’m not sure I’m hugely qualified to talk on this subject at the moment as I’m not currently experiencing itchyness which I’m very thankful for), but I do sympathise with joint aches and muscle pains – I’ve had them pretty much hourly for years and can’t really say what works and what doesn’t in my experience… Like you say, just another irritating sign that your body is treading water all the time…although as we’re both supposed to be doing the positivity thing maybe we should hope it means it’s in full fighting mode… 🙂 Are you on vit D supplements? You’ve just reminded me that I should be taking mine more regularly than I am (slapped wrists for me too it seems! It’s hard keeping up to date with everything, even just the other day I almost gave myself two lots of IVs in one day thinking it was my morning dose again, everything just blurs into one after a while! I feel like I’m losing the plot most of the time, I’ve even got to the stage where I’ve just pretty much accepted now if I can find the car keys then hoorayyyy, if not then that’s not surprising! And don’t get me started on not being able to remember words in sentences – talking to me when I’m a bit under the weather is increasingly like playing Articulate :/ silly cirrhotic liver, it’s like some little evil gremlin playing tricks in there!)

    Hang on in there chick, you’re doing grand 🙂 (and as for swimming, sounds like a lovely way to try to take a break from it all! Great idea!) Take care, hope you have a positive few weeks from here on x

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