It is my pleasure to introduce Matt Lawrence to this week’s Guest Post spot!
He will be writing about his experience of self-care (read my series here) in light of his long-term illness.
Matt has his own blog site (click here to visit), where he documents his experiences of having a long-term liver disease Primary Sclerosing Cholangitis in the hope that he can help, educate and bring some comfort to others who may be suffering from the illness or similar illnesses, through his own experiences.
Lets read Matt’s story…
As a survivor of a long-term autoimmune liver disease called Primary Sclerosing Cholangitis, self-care became a way of life that extended beyond self-care that we think of as part of everyday life such as extra moisturising cream, using sun cream in sunnier climates and using certain hair products to help with a dry scalp or to straighten hair.
When you have a long-term illness, self-care goes much deeper than skin level. You start to continually search for products such as food, drinks and making lifestyle changes that you hope will help to heal you from the inside out.
Primary Sclerosing Cholangitis is an uncommon chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size due to inflammation and scarring (fibrosis) eventually leading to a liver transplant. The hope for patients of PSC is that as we progress along our journey we can educate ourselves enough so as self-care can contribute to extending the time we get to live with our own organs. After all, living with your own organ for as long as possible is better than having to go through a 10-12-hour transplant with a lot of uncertainty attached to it.
What is self-care when you have a long-term liver disease?
It starts on a basic level with food and research that is based on finding foods that best support the liver and help to detoxify the liver. However, as PSC is an illness that affects the bile ducts, we need to examine things at a deeper level and that is the difficult part.
What can help to increase bile flow, what can help to protect the liver and how can we protect the bile ducts? This is a question asked most weeks as it is the narrowing of the bile ducts that over time causes the long-term damage to the liver. Some commonly known products include Milk Thistle and Dandelion tea, but do they help? This is the hardest question to answer.
As the illness progresses we find that other symptoms start to appear such as chronic fatigue and itching that is often uncontrollable and constant. With the introduction of new symptoms, it leads us to more research and the use of more products that we hope will help with our own self-care.
Beetroot for the liver, strong coffee and food high in iron for the fatigue and if you are a smoker or drink alcohol, these are things that we are all advised to stop at the beginning of the illness. In addition, staying fit is key to staying well and this is something we learn as we go on our journey. However, due to the unpredictable nature of the illness, the amount of exercise one can do varies from one person to the next. My exercise included weekly yoga lessons, walking and daily press-ups.
As we are all part of the internet age it is our good friend Mr Google that we turn to as our guide to self-care, but as PSC sufferers find out, the uncommon nature and unpredictable journey that we go on means that Mr Google ends up being Mr General. That is General in terms of not being able to be specific or lead us down a path to true successful self-care.
In the end, self-care is very hard to quantify when you suffer from an uncommon illness like PSC. We cannot put our finger on one thing and say that it was a specific food or herbal supplements that helped us. We always end up coming back to the conclusion that it is a combination of medication, healthy eating and exercise that contribute to longevity, but what is it exactly that we have done that has given us that respite for a day or 2? I think it is safe to say that we will never know and continue with the idea that carrying on with all that we have learnt is better than giving into our illness.
You can read more about my journey living with a long-term liver disease, having a transplant and life after my transplant by visiting my blogsite.
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If you would like to guest post on my blog, contact me here.