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Friday 6 October 2017

HEALTH: What having a Chronic illness has taught me

Image taken from Pinterest.

I don't often post anything particularly personal on the blog but I want to introduce some posts about my journey with Lyme Disease, Bartonella, Babesia & other viral infections, because it is a huge part of my life and an illness that people need to be aware of and know more about because it is hugely debilitating and life changing if not recognised and treated quickly. I have had it for 17 years so I have a lot to say but I don't want this to become a Lyme blog so I think I will keep the posts to once weekly. I believe that there are always positives in every situation and this attitude has kept me sane over the last 17 years. Here are some of the lessons I have learned along the way.

People can be kind: My husband is the kindest and most generous person in the world - my absolute rock, who still sees me as "me" and not my illness. I am lucky to have a lot of kind people in my life (my mother, in particular has gone above and beyond for me) and the smallest things can mean the most - a handmade card from my niece and nephew means more than anything, people checking in to see how I am, even after all these years where the answer has been the same, means a lot. Small acts of kindness mean a lot and can make the very tough days a little brighter. I also think that I am a more compassionate person as a result of suffering from this illness, an invisible illness and for so long.

People can be cruel: Unfortunately, there are also some really cruel people in this world but my advice is to eliminate them from your life as nastiness and negativity is toxic and you definitely don't need that in your life when you are ill (or at any time).

People can be ignorant: It is very difficult to bite your tongue when people make sweeping statements and flippant remarks and. even harder when they think they know it all but are, in fact, completely ignorant. Examples - you're a Type A personality and that's what caused you to burn out. You should just forget about the illness and do some voluntary work - that'll get you going again. You should have a baby - the surge in hormones will help you. I could go on but my blood pressure is rising!!!

People can be judgmental: "Oh so you were able to go on holiday? You must be better" No, I couldn't switch my illness off for the week - it came with me, the only difference was the heat helped my bones. "Well you look fine" Eh, that'd be the makeup! "You'd want to try having children - then you'd know exhaustion" Eh, FUCK OFF!!!

Your true friends stick around: I am very lucky in that all but one of my friends still keep in touch - even if it's only by text because they know that chatting exhausts me and causes my glands and tonsils to flare up. I have brilliant friends - although they can't fully understand how it feels to be so ill, they do their very best to be empathetic and learn about the illness. They still see me as "me" and ask how I am and keep my up to date with their news. My best friends are so respectful and understand that none of this is my choice.

Just because you can't see it, doesn't mean it isn't real: This is a lesson that everybody needs to learn. Invisible illnesses carry a huge stigma because & we can be made to feel like we have to justify ourselves, just because others can't see what is wrong. I can see it though - my eyes don't sparkle like they used to and my hair and skin require a lot more maintenance to look semi-normal, but only the people closest to me would know that.

I didn't ask for your opinion and don't need your approval: I know that I am ill, I know what is wrong with me, I know there is no cure so if somebody doesn't believe me, I don't care! People can be so full of self-importance and give opinions on your treatment "sounds like witchcraft to me" "you don't believe in all that, do you" "you need to go to America to be cured" " you need to learn to live with it and move on with your life" "being on antibiotics that long can't be good for you" As I said earlier - FUCK OFF!

You are stronger than you think: There have been so many setbacks and treatments that didn't work over the years. My Income Protection wasn't paid out because "it's all in my head", we've spent around €110k over the years trying to get a diagnosis initially and then treatment and I am still ill. All of these things (and many more) are difficult to deal with but rather than let it get me down or make me give up hope, I am still as positive and determined as ever to get into remission and that strength can only come from within.

You are more patient than you thought possible: I was never a patient person prior to becoming ill and now I have no choice but to be patient - especially with myself and my body.

You learn something new every day: Every single day, I learn: whether it is a supplement that might help me, a treatment I should try or even as small as being able to stand unaided for a minute longer than the previous day. I learn more about my illness, myself and others.

A night can seem to go on forever: The dreaded, long nights when I am in too much pain to sleep can seem so long and can cause the mind to wander and worry. To distract myself, I list my blessings in my head and sometimes, making shopping lists (I am a beauty addict after all!)

A day can make all the difference: I have gone from thinking I must be dying one day (being spoonfed and bathed by my husband because I don't have the energy to lift my head off the pillow) to feeling a lot better the next day - albeit still weak and unable to get out of bed, but making progress nonetheless. It is amazing how things can change in 24 hours so you need to remember that on your darkest days.

You need to believe in yourself: There is more to you than your illness. I have always tried not to let my illness define me - by keeping up with what is happening in other people's lives and (trying at least) to keep up with popular culture - films, music, fashion, beauty etc. I started this blog to give myself something else to focus on - another identity if you like. I take care of my skin and hair as best I can because when I (hopefully) come out the other side of this, I want to have some semblance of my former self.

You know your body better than any doctor: I was mis-diagnosed for many years but knew that there was more to this than M.E. I felt poisoned and knew that something had to be causing that. It led me to Germany after 5 years, where I got my first proper diagnosis. The doctor there told me I was heading for heart problems that year if I hadn't seen him. My gut told me that this wasn't a case of burnout and that something was causing my symptoms other than M.E. and I'm glad I followed my gut.

Doctors can only do so much: You need to help yourself too. Avoid stress as best you can, drink water, don't smoke, try not to eat too much sugar, think positively, try not to overload your already toxic body with more toxins.

There is always hope: Even on your darkest day, there is hope if you believe there is. I have this indescribable will inside me to live the life I want and that I deserve and I will never believe that there is no hope of that. Other people may impose their opinions on "it's too late" "that won't happen" but nobody ever knows what's around the corner - even doctors. I believe in miracles (where you from, you sexy thing! That song always comes into my head when I say that!) and this is only one chapter of my life.

The best is yet to come: I firmly believe this and I visualise the life that I want with my husband daily. I will appreciate every little thing even more having been through so much and just know in my heart that things will get better and that life is beautiful so I will gladly leave the illness and the trials it has brought behind me because being bitter about the lost years would only rob me of my future. 

What has adversity taught you?

Thanks for reading! 

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