Tag Archives: autoimmune hepatitis

Cause it makes me that much stronger, Makes me work a little bit harder

I have been a member of the Spoonie community for a lot longer than I realised, I was diagnosed with a chronic liver condition (autoimmune hepatitis) when I was 24, and will be taking medication to keep it in check for the rest of my life. But as long as my liver behaves itself it really doesn’t have a huge impact on my life, you wouldn’t know I was unwell at all, no time off work, no physical difficulties, but then I became really sick a few years ago and I became a fully fledged member. Hello, chronic pain and chronic fatigue, fibromyalgia and arthritis!

It often feels like these are impossible conditions to live with and I really do mean ‘live’, because at it’s very very worst it doesn’t feel like you are living. You barely exist and often feel like you are actually dying, of pain or exhaustion, of memory loss, of the inability to think at all. It is utterly and completely soul destroying and you don’t even need the wee small hours of the morning to impress upon you the isolation, the unending trauma and the fact that no one at all can tell you when and if you will ever feel any better than you do right now. Draaammmmaaaa! Well, no, not really. I have often heard people refer to different phases of their lives, such as before children and after children, but my life is defined by before chronic pain and after it started. I cannot impress upon anyone how completely my life has been altered by this condition, I have no control over my own ability to function. Told you I wasn’t being dramatic.

But I am a very practical soul and have spent, and continue to spend, a great deal of time reading up about developments in my conditions The British Medical Journal is always a great source of info for latest studies and research and I have seen some of the doctors I have found through this research. I refuse to believe that this is it, that the medical profession has reached their conclusions and that there will never be a better way to treat my illnesses. I have investigated and tried many medications and assistance aids over the years and, while I am not going to write about the meds right now, I thought I would share some of the assistance aid purchases that I have made that have actually helped.


My faithful Yuyu

First up is the Yuyu, a long hot water bottle that you can sling around your neck, it comes with a tie at each end so it can tie it security around your back and walk around quite happily. Why no one has thought of this before I have no idea but I quite happily wear mine under my coat on old winter days when I collect Lu from school, I suffer from excruciating pain around my right shoulder blade so I can manoeuvre this like a jaunty sash and it eases the pain. Cold is a real issue for exacerbating my pain so this has been a godsend. They are a little dear, starting at £33, but to me, mine has been worth every single penny and maybe something to ask for as a Christmas gift.


Multitasking. Please excuse my terrible taste in Tv programmes. Catfish is a real weakness of mine.

My second useful item is a bed desk on legs, specifically made to use with a laptop so it has holes allowing the computer to cool down. No more hot laps and wondering if your computer is going to go into literal meltdown as you binge-watch Netflix as sometimes when bedridden box sets are the only thing that one can do to pass the time. I got mine from Amazon.


All the hospital glamour.

My next recommendation may seem slightly odd but works for me. Soft blankets, the fleecy type, when my skin hurts and I ache inside the thing that helps the most is lying on one in bed and having one to cover me, its something about the softness that I find comforting, a bit obscure, maybe its a infantile cozy security issue that one needs to fulfil when feeling so so sick but it does help my pain. I took one to hospital with me to lie on when I had my last procedure and I tell you it made it more bearable, even if I did get odd looks. I have a few of these ones and a few of these. They are relatively cheap, Primark does good ones as do most supermarkets.


This doesn’t come with a cover, the thing you can see to the left is part of the Starship Enterprise that Lucia has been making out of a cardboard box.

Next is a lightbox. Being inside so often, not always able to do the obligatory go outside and see the daylight means I suffer from SAD, and actually I have for an awfully long time so to address this I got myself one of these and it has made a huge difference to my mood, I’m not composing poems to the beautiful sun but I am feeling less blah. I pop it next to my bed, in my living room or on my desk, whenever I go it comes with me and I have it one for maybe an hour a day.

Finally, let me introduce you to the thing has diminished my physical pain by the most. It is a neck support memory foam pillow which has a large or small hump, depending on which side of the pillow you use. I don’t really know how to describe it, so when you put your head on it your neck is supported and your head almost dips back to what would seem a much more natural position when sleeping, it is hands down the best thing I have ever bought and the thing that I cannot be without. I take it on holiday with me, I take it everywhere I will be sleeping. See the photo for the humps and a soft blanket thrown in.

It is worth noting that all of these aids are portable and the fact that I can take them with me places means that I can go places without having to reap not only the tiredness of travel but also the setbacks caused by compromised comfort.

Amazon also deserves a shout out for those of us who are housebound or lead lives of unpredictable ability. I pay the subscription for Prime next day delivery and it has been my saviour, my contact to the outside world. Let’s face it chronic illness means our best-laid plans are often thrown into turmoil within a matter of hours and something that was as simple as a drive to shops to pick up a gift for someone’s birthday becomes an impossibility. So it has enabled me to order everything from birthday gifts for my daughter’s friends parties to straw for our house rabbit, all delivered in a timely manner. Mostly.

I have no affiliation to any of these companies but thought others may find this information useful, either for yourself and or someone you know.

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.