Tag Archives: liver

Ooh aah just a little bit, oooh aah a little bit more

Hello world, it has been ages since I last blogged and it hasn’t been due to lack of desire but merely because I couldn’t think of anything to write about that may be of interest to anyone, including myself. I’ve been off work poorly again with my latest diagnoses of fibromyalgia and am still waiting for my Pain Clinic referral so each of my days are a bit like groundhog ones. I am exceptionally tired, constantly. If I do nothing but rest all day I am beyond tired and could sleep for days, if I do ‘things’ then I am physically exhausted by 5pm and can barely speak. This is the most difficult illness to manage that I’ve had to date, in my mind anyway.

The generally accepted wisdom is that exercise creates energy so off to the gym I go for gentle exercise, I pace myself but the next two days are always a write off, this illness isn’t one of those that works that way and I find it incredibly frustrating. I feel like I am constantly having to think three days ahead all the time. If I go for a swim today will I be able to get up tomorrow to take Lucia to school? It goes against everything I am, I am a single mum, with a full time job, a puppy, about to commence a Phd, I am the one that does lots of stuff, and I enjoy that, I fit it in and I manage but Fibromyalgia is standing on the sidelines mocking me. If I am planning on driving anywhere I have to consider that I won’t be able to take my painkillers as I cant drive on them, so I have to calculate how long it will be until I can take them and then accept that I will be in a lot of pain for that time.


I massage my hands and knees and elbows with frankincense aromatherapy oil before I go to sleep – its good for inflammation. I take turmeric and ginger tablets, as well as a B Complex (can help with mental health), primrose oil for ‘that’ time of the month and cod liver oil for healthy everything. I have fresh juice each day with fresh ginger, I have a smoothie with berries, soy milk, banana, nut butter, dates, a spoon of acai, and a spoon of maca for energy. I have overnight soaked oats with chia seeds and linseed for breakfast. I drink water – though I hate it. I am doing the things that I should, and these are things I like. My mum bought me up eating tofu and brown rice in a time when people who did that were thought of as cranks (anyone remember the restaurant Cranks? amazing baked potatoes rolled in oil and rosemary before baking). I take the puppy for walks in beautiful locations that feed my soul, I’m trying my absolute best to ignore my cravings of Cadburys Big Chocolate Buttons, but I am also being kind to myself,.I am lucky that I have positive people in my life, my daughter is always the light at the end of the tunnel, she is my joy personified.

But, isn’t there always a but, I am back to work tomorrow and I am frightened. My biggest fear has always been the inability to cope. In my mind if I can’t cope then that’s it, game over. Like a house of cards, it will all come tumbling down around me. And I am feeling guilty, all the time. Guilty that I am tired and don’t go to the gym everyday, guilty that I am tired and am not up with the lark chasing the day, guilty that I let Lucia eat her favourite meal of fishmongers and chips everyday because I don’t have the energy to try and make her eat something I have created for her, guilty that some times I am so tired that I don’t have the energy to argue with Lu and I let her skip her homework for a night, guilty that when Lu wakes up at 6am on a Saturday morning I give her the iPad to watch so I can get some more sleep, guilty that when her dad collects her every other weekend for her Saturday night stay that I am relieved that I will be able to go to bed and not have to cook or play or have a bath if I don’t want to, guilty that I bought plants at the school fete and they have been sat in their pots for days because I am too tired to weed the veg patch and plant them, guilty that I want to be bathed in my pjs (thats if i have actually got out of them) by 7pm and that I just can’t muster the energy to go on a ‘date night’ with my partner. I worry he’ll think ‘this isn’t what I signed up for, what happened to the woman I met two years ago?’


This illness is depleting me, the ‘me’ of old is fading, I’m not a good mum, friend or partner anymore, I don’t have the energy and to ask other people to live with that is extremely selfish of me, it makes it seem like the ‘Miriam’ show, and that’s not what I want. It isn’t the ‘me’ I want to be, it isn’t the ‘me’ I was  months ago but I fear it will be the ‘me’ from now on. I have become defined by my illness, restricted and curtailed. None of my other illness have ever done this to me, though they are medically more serious, but whats a liver transplant between friends.

But I must tell you a secret, something I quite dislike myself for feeling, something I am really unhappy about and that is how much weight I have put on. I hate that it bothers me, I hate that I cant seem to lose it, it makes me feel like I have no self control, why can’t I make myself exercise everyday? why can’t I curb my appetite? why does my weight bother me? It is so superficial but when I see myself in the mirror, which I avoid like the plague, I think ‘oh god, you look bloody awful’. If I was talking to a  friend I would say ‘FFS get a grip, you are dealing with so many things, the steroids increased your appetite, you suffered  a bout of depression, you are suffering from chronic fatigue, shut the fuck up abut your weight, you are a strong woman, a mum to a wonderful daughter’ but for the first time ever in my 42 years I am thinking ‘If I was thinner I would be happier’ I mean, what the hell??? Anyway thats my shameful secret, I feel like a failure.

Apart from all of that I’m ticking along quite nicely, you?

Ps the blog title refers to using up my energy a little bit at a time, slightly convoluted but I’m feeling the Fibre fog at the mo.

Hmm, I can’t think of a song that contains the lyrics ‘coming out of remission’?

Life trundles along in my household, Autumn is here, Christmas is coming as is a beautiful bundle of joy – in the shape of an eight week old red head Mini smooth dachshund puppy who we are calling Livia (my ‘other’ baby name), not that she is a baby replacement, no, nope, not me, not at all – read; absolutely totally but I draw the line at kissing on the mouth. In relation to the puppy not my daughter obvs.

Anyway, so, once upon a time about 12 years ago during a very random all encompassing blood test it turned out that there was something seriously wrong with my liver, and noooooo, it was not alcohol related! It took the various Drs and Consultants a few years to work out what to do with me and then we had nice long chat about liver transplants and how they worked. I was eventually diagnosed with Autoimmune Hepatitis, which is a type of Autoimmune disease, its is non contractual, it is non contagious, it simply means that your body attacks itself. They don’t know why people have it, it just is.

Essentially my own body was rejecting my own liver and destroying it, I was very unwell and all options were being considered. But now that I finally had a diagnosis the first step was to start taking the same drugs that transplants patients take with a view to fooling my body into accepting my liver. This works by essentially removing your immune system so your body accepts the new organ but it also means that you are very susceptible to other illnesses¬†– I caught chicken pox during my law finals! ¬†And so to try and avoid being put on the list for an actual liver transplant there were three drugs to try as the last ditch attempt to right the wrong. Like Goldilocks, the first lot didn’t work, the second lot worked fantastically but the long term side effects were a bit horrid and so onto medication number three (a combination of two) which fit just right and that is what I have been taking for many years. I have remained in remission ever since but it is not ideal to remain on them long term so the aim has always been to stabilise my disease and then wean off the more harmful of the dual medications. The medication itself is a wonder drug but taking it can make you feel just awful and weaning off it makes you feel awful too but I managed it and all was well.

Finally in June this year, after 10 whole years, I became successfully functioning without one of the medications which in itself had left me with a whole other illness caused by the side effects but I remained in remission without the meds which was the main thing.

But, my excessive ¬†tiredness, the nausea, the stomach cramps, constantly feeling like I’ve been hit in the stomach, the big fat red painful hot lesions on my legs and arms, the pain in my elbows, wrists, knees (and toes, knees and toes), the sore throat, the dry eyes, the swollen tummy, have all been explained by my latest routine blood test results. I am coming out of remission and am starting to become unwell again.

I am surprised but not but not shocked. Though I was a little disappointed, I hate having to actively think of myself as ‘poorly’ and to have to adhere to and admit that I have actual physical limitations – damn silly unreliable body, not really! My body has been very good to me so far.

This is now complicated by the fact that the painful joints are probably another autoimmune disease that never made itself apparent because I was taking the medication that held it at bay and as soon as I weaned off those meds the illness made itself apparent. So, today I was having an appointment with a new consultant at a whole new department in a whole new hospital, in a few weeks time I see my usual consultant for my liver disease at an entirely different hosiptal and we will all try and come up with a plan. I dread going back on the meds, they have very unpleasant side effects but the alternative is not an option. However, none of this will happen before I have had all the blood tests imaginable, chest X-rays, feet X-rays, hand X-rays and further a referral to another consultant and some biopsies of my lumps and bumps. It seems a daunting road ahead and one I felt I had reached the end of but here I am at what feels like the beginning again, like I have landed on the snake in a game of Snakes and Ladders. But I will do what is necessary to remain as well as I can, lots of rest, lots of tea and lots of knitting for the new addition to the family.