My A to Z is based on personal experiences of having a Liver Disease. However, this has been tricky. Some came naturally and some like having a Liver Disease, were very taxing.
A is for Alcohol – Something I gave up the minute the GP told me my Liver was off the scale and that I could have a Liver Disease. Nice way of putting it I know and, I didn’t panic too much… Honest!
B is for Bile – Bile, bile, bile. I am sure like me, you are sick of the word. Your bile ducts are blocked, the bile is not flowing, this medication will help the bile flow easier and so it goes on.
C is for Cannula – Living with a Liver Disease such as PSC or any long term illness means we get to see a lot of them. Love them or hate them, they serve a purpose and help us overcome our struggles. However, if you are anything like me… I do not get on with them as they have a nasty habit of falling out.
D is for Diet – Diet is a huge part of living with any illness and in particular a Liver Disease. Don’t eat this and don’t eat that and then, you must only eat this. I found no matter the advice, there was always something I wanted to eat that I couldn’t. Can I add the word restrictive in here as well? Not starting with D I know but, appropriate for this topic. Restrictive Diet.
E is for Education – Education is the key to survival. Knowing what medication to take, why you have to take them and understanding the symptoms of attacks such as cholangitis. I call it being ahead of the game. However, as PSC is such an unknown quantity, it is not as easy as we think to know and understand everything.
F is for Fatigue – One of the most hated words of a PSC sufferer. Give me a coffee, maybe an energy drink or maybe, I will sleep an extra few hours. No matter how hard we all try, fatigue is one of the hardest things to overcome when you have a Liver Disease. HELP!!
G is for Gallbladder – To be honest I know little about the Gallbladder. Only that mine was taken out when I had the transplant.
H is for health – Health is one of the most important things in our lives. You can have all the money in the world but, without your health you are nothing.
I is for immune system – We are under attack, it is under attack. Attack, attack, attack. Isn’t that our daily struggle?
J is for Journey – We start the journey not knowing and often know more than our dear friend Mr Google at the end. It is simple really, who knows your body better than yourself ?
K is for Kilo – No, we are not watching our weight as an obsession to be the best model on the catwalks of Milan. As long term sufferers of an illness, weight gain and weight lose are signs that our body are trying to tell us something is wrong. I know it is nice to lose a few kilos to fit back into an old pair of jeans but, sadly us PSC sufferers don’t have that luxury.
L is for Liver – As PSC sufferers we hear this word very often. The Liver is the bodys’ filter system that our lovely Liver Disease PSC wants to be in charge of. I see it as a struggle between two people who are fighting to see who is the strongest. You could actually relate it to a boxing match where one boxer is against the ropes and has no choice but to carry on. I will leave it to you to decide which one PSC sufferers are.
M is for Medication – If I get told to take another pill for something else I am literally going to scream.
N is Night-time – I say night-time as it was the worst time of the day for me. I just could not sleep due to the constant itching and night sweats.
O is for Operation – Operations are quiet common as a Liver Disease such as PSC progresses. Thankfully, mine were always minor until the transplant.
P is for the wonderful PSC – An unknown illness to most but, our daily struggle that puts everything else in life into perspective. The fight we have to fight with our body is not visible to others and often misunderstood. I have heard many things in the past such as, have a coffee and you will be fine. Use this cream and you will never itch again. Go on this liver detox diet and you will be cured. Don’t we all wish it was that simple.
Q is for questions – If you are anything like me, I am sure the consultants, doctors and nurses think I have verbal diarrhoea with the amount of questions I asked. However, it is good to be in the know right? After all it is our body.
R is for Rash – I would often get unexplained rashes and no matter the pill, potion or lotion it would come and go until I was literally pulling my hair out.
S is for survivor – I know we all have our problems but, I truly believe that PSC sufferers are true survivors made of very strong stuff. Some of the things we have to endure are so crazy and often would not be believed until someone had actually gone through the same thing. At this point I would love to hug you all.
T is for Transplant – I am forever grateful to the Donor and his family for giving me the best gift ever. The gift of life.
U is for uncertain – This for me was always the case. I was very uncertain what would happen next. Living the unknown is the only way I can describe living with PSC
V is for victory – This is how I used to see my good days. I would call them victory days as I had some respite from the PSC and finally had calmed him down. Well, for 5 mins anyway.
W is for what next – What next is going to happen to me? Swollen legs, another scan, blocked bile ducts, more medication, the itching will not stop, blood tests, nausea, vomiting and the list goes on.
X is for X-Ray – If like me, suffering with a long term illness became your norm, I am sure you have had enough X-Rays to become a radiographer.
Y is for Yesterday – Yesterday, was I really as bad as I am today or is it that I cannot remember as the days are rolling into one.
Z is for Zoolimkjehrbs – Zoolimkjehrbs is not actually a word. Z is a hard one. Maybe you can help here?
Thanks for reading.
Peace, Love and Light x