Can I see the Mocktail List?

So many of us only really pay attention to our health as a reaction to a health scare or diagnosis, and I include myself in this. I am unable to reverse my diagnosis of Parkinson’s, but I am proactively trying to ensure that that’s ‘my lot’ and that I take any steps that I can to avoid any more earth-shattering moments in a doctor’s chair. I don’t want to look back and think, ‘I could have prevented this’.

I decided to stop drinking alcohol 11 weeks ago, but I gave in to FOMO and had a few glasses of wine on two occasions; my symptoms then flared up and I knew that I had to opt for total abstinence; it was time to accept that this little cup of adventure, fun and confidence was keeping me from living my healthiest life, and it was most certainly not aiding my recovery. I want to stress that this is not a judgemental blog about anyone else’s drinking habits, this is about my own healing journey and only mine; I just know that my life is now a lot better without alcohol in it. I firmly believe in letting go of the things in our lives that are not working, and so I had to make a change; alcohol had no place in my wellness regime. My brain is so precious to me and I am trying to create new healthy neural pathways, not destroy those that I already have.

It was time to rethink deeply ingrained habits; most of us know people who drink just like we do and so we can normalise it.  I, like many of you reading this, don’t feel that I have a problem with alcohol, and I am not here to shame anyone, I am just reflecting on the role that alcohol plays in our lives; it is everywhere!  It is perceived as a fast track ticket to a magical experience, an automatic relaxant, it helps us to fit in and come out of our shells, it anaesthetises our pain, it helps us with stage fright  and takes the edge of a tough day or a long week. Our brains are designed to seek out fun and excitement and this bliss inducing magic elixir appears to do provide just that.

Symptoms of Parkinson’s include anxiety and depression, both of which are exacerbated by alcohol. Many Parkinson’s patients take medication that reduces impulse control, so the odds are not in our favour when we use alcohol which is seen to be even more addictive than cocaine. Alcohol destroys brain cells and contracts brain tissues, it interferes with memory and brain receptors; hardly what I need considering that I have a serious neurological condition. Alcohol overstimulates the nervous system, and mine is already on overload. On top of that, it is linked to so many chronic illnesses including cancer, alzheimer’s disease and dementia; all of which I’d prefer to avoid.  

Living an alcohol-free life will initially take some getting used to, there is no denying that; you might feel like an outsider, ostracised, and the odd one out. You might feel that life will be boring and that you are losing out, but taking a drink is only providing temporary relief and external fulfilment.  Let me assure you that you will have more energy, better mental health, improved sleep, more optimism, and you will greatly reduce your chances of being diagnosed with a serious health condition. The positives significantly outweigh the negatives and there are so many non-alcoholic beers and wines out there that provide the taste of alcohol but without the projectile vomit and feelings of jetlag, and you will never regret your decision the next morning!

Cutting down on alcohol was not an option that I chose as I was still putting it on a pedestal, and moderation was just too much of a grey area. I had to get comfortable with being uncomfortable, very often we drink as we have no tolerance for discomfort. Rather than turn to alcohol, we need to work through our feelings, not run from them. We need to feel our pain and not numb it. If you’re not sure that you can do it, maybe that’s a sign that you should try?

‘I didn’t know that I was addicted until I tried to stop’. Anonymous

Now, if only I could deal with my addiction to animal print so easily…    😊

‘You Don’t Look Sick’

Many illnesses are invisible and looks can be deceiving; those who live with chronic conditions and mental health issues are experts at faking being well, they are well accomplished at acting ‘normally’ when they are suffering physically, mentally and emotionally. I want this blog to be a positive experience for all readers, but I also want to be a voice for those living with chronic illness and those conditions that cannot be ‘seen’. It is not an attention seeking exercise or a sob story, but it is only right and natural that I raise awareness so that others can get an insight into the daily struggle of trying to act normally when you are trying to hide or control your many symptoms. A good day is a day when you are stronger than your symptoms and you don’t feel like you have been hit by a truck, it is important to be positive but not every day is good and so there must also be room for sadness, the two can coexist. Honour the pain and loss; these feelings are valid, and it is important to give them their rightful place in your healing journey.

Sometimes those of us with chronic illnesses and mental health issues feel that the only people who understand us are fellow sufferers and the online support groups. We are often fighting this battle in isolation amongst those who are not in our bodies. We are not lazy, we are not hypochondriacs, we want to work and socialise, we are not being dramatic, we do not lose our careers, or spend a fortune on healing treatments (and concealer), and step back from social engagements to get attention, we do it because we’re sick and tired.

Living with a chronic illness can mean that you have intermittent brain fog, forget passwords, have insomnia, are tired every day, feel like a useless burden to others, are lonely, feel older than your years, can’t do simple tasks, have constant anxiety and are often depressed. Good days are such a blessing and worth more than any lottery win.

In terms of my own condition, the symptoms of Parkinson’s really are endless, and it would take many pages to include them all and even at that some would be left out. Parkinson’s is a neurological condition that affects movement, it can cause slowness and stiffness in muscles, tremors, loss of control and balance and it also affects mood and anxiety levels. There are so many symptoms and each patient will experience these on varying levels.  On my own worst days, I have restricted movement, chronic fatigue and excessive anxiety; this then leads to panic attacks, palpitations, hypertension and low self-esteem. At times I isolate myself socially and lose independence as I don’t want to be around people due to paranoia and embarrassment.  The anxiety is crippling; it feels like suffocation and an uncontrollable feeling of terror. On my slow days being able to hold a fork or dry my hair is like climbing Mount Everest. During my bad days the fatigue is overwhelming; I get exhausted walking up the stairs, and on those days I dream of being able to do housework without having to take a break, I want nothing more than to go on a night out with friends and last past 10pm, I wish that I could make plans and know that I will definitely be able to stick to them, but what I want to do and what my body lets me do on my bad days are two very different things.  

So even though we ‘don’t look sick’, we are. When we say, ‘I’m fine’, we are not always telling the truth. When we look well, you don’t know the struggle it took to look that way. Remember that everyone is fighting a battle that we don’t always know about. So please support us, love us and try to understand…

Dear Younger Me…

Dear 20-year old me,

Let me start by saying that your life is lacking any balance, in fact it is hanging in the balance! When you are 41 you will be diagnosed with Parkinson’s Disease, a chronic illness that causes imbalance, or will it in fact be caused by your own imbalance? You are out of alignment; due to Parkinson’s you will find it easier to walk on your tiptoes than to put both feet on the ground, your body is telling you that you are tiptoeing through life hoping to make its safely to death. This illness will not go away until it has taught you what you need to know. Look at the cause and not the symptoms. You are creating many of your own health problems…

If my 43-year old self could give you advice, then this would be it:

Do what is important, not urgent. Slow down, or Parkinson’s will FORCE you to slow down.

Care for your body and it will repay you. Listen to your body; it will whisper to you in your 20s and 30s, you will ignore it, and so it will hit you with a drop kick in your 40s. Will you listen then?

Do an inventory of your life; if something doesn’t enrich you and give you joy, then get rid of it. Get honest with yourself, and I mean get really honest! Choose what is right for your health over what is easy. Make a list of the people, activities, responsibilities and habits that do not add to your life, and then delete! Step away from the herd, look at the areas of your life that are not working and change them. Dissatisfaction is sent to make you change.

Relax, you will not heal if you do not relax. 7am on a Saturday morning is not a lie in, the window cleaners do not care if you haven’t ironed the duvet that day, grass doesn’t need cut every 5 days, be a risktaker and use the ‘good’ John Rocha wine glasses that Ciara bought you. You will be tempted to hoover Ernie (the dog) every time that he comes in from the garden, don’t! Your body is a reflection of your inner state, you need to sit still and stop being so hard on yourself. Once you start to lighten up, your heavy dragging limbs will too.

You need to stop wearing your perfectionism like a badge of honour. You are a people pleaser, you do more than enough and need to step away from the ‘disease to please’. Those who think that others do not do enough are struggling with their own lack of worth, they seek their validation by attacking others in order to raise themselves up. Perfectionism is the thief of joy; being imperfect should not create shame. What’s the point of having outward success and perfectionism when your inner word is crumbling? You are just seeking fulfilment outside of yourself. The imperfect you is indeed just perfect to those who matter.  You are not defined by a wage, house, car, status, or education. You are however defined by your heart, the energy that you emit, your daily good actions and how you make people feel.

You work too much; you don’t have to be constantly seen to be working. Being the first or last person in the staff carpark is nothing to brag about. Doing more than others does not mean that you are better than them. Don’t confuse having a career with having a life. Finally, lunch breaks are not for wimps!

Things don’t have to be this way; you need to picture your ideal life and say ‘no’ to anything that does not create it. Picture the life that you would be jealous of and go create it. Change is scary but not as scary as  continuing to live like this. Treat your Parkinson’s like an assignment, learn from it and grow from it. Your life is a manifestation of the choices that you have made, a wise person recognises when their life is out of balance and then actually corrects it.

Will you listen?

If only we all knew then what we know now…

Not Afraid

This blog was inspired by the lyrics to Eminem’s ‘Not afraid’; it’s on my running playlist and it never fails to inspire me…

(WARNING: Flashing Image)

Inside every chronically ill person is a yearning for their old life and a fully functioning body. However, the uncomfortable truth is that we are not who we used to be, dealing with illness is hard, but dealing with the fear of the unknown is often harder. Although, the reality is that we are afraid of what we THINK we know about our future.

This fear can cause you to live in a world of hurt. Your ego will be your greatest obstacle to having any hope of recovery or at least halting symptoms; it shows up when we are fearful and at a crossroads, it tries to pull you down; and it is the enemy of faith and hope.

During those first few months after diagnosis I was terrified, and I was convinced that my life was going to crumble around me; and so, there was nothing else for it but to never leave my house again! I then got angry and I told myself that I was not going to be a helpless victim, I would work through this condition at the same speed I always had done with everything else in my life. I tried to let go of some of the things on my to-do list, unfortunately those things were mainly sleep, cooking healthy meals and exercise. My fear of people feeling sorry for me was causing me to still put everything but my health and well-being first.

Fear is a normal and understandable reaction to a diagnosis of Parkinson’s or any other chronic illness; we are only human. Fear tells you to be afraid, that you are under attack, and to resent those who are not ill. I’m sure many of us have rolled our eyes when anyone dared moan about their silly ‘First-World Problems’, or looked jealously as someone arrogantly walking with a ‘normal’ gait who didn’t have any idea how lucky they were, and scoffed at the cheek of someone brazenly swinging both arms as they walked. When we are in pain, we either embrace it, numb it out with distractions, or else we inflict it on others, and that is what I did. I went through the numbing and inflicting it on others before I embraced the pain. I felt under attack, and so I wallowed in self-pity and martyrdom.

I realised that pushing the fear down and not dealing with it was not healthy. It needed to be addressed and it didn’t go away just because I ignored it. Sadness had a purpose to serve but I couldn’t get stuck in it. Rock bottom was a catalyst for change that forced me to look for solutions.

My thoughts about the future were just thoughts in my mind. I had a choice to make: run or rise? It was time to have faith in myself, miracles, the universe, God, hope and not forgetting medicine. It was not worth letting this in to destroy my inner peace, I needed to live in the moment. I’m not naïve and know that many people descend badly after diagnosis, but many do not! I was determined to be one of them. When the negative chatter begins, I just let it pass by, the scenarios that I am worried about haven’t happened yet and may never happen. Fear had been running the show for far too long. I would no longer be a victim to my thoughts. Worrying literally got me nowhere, so why was I allowing it to consume me?

So, are you ready to straighten your crown and show fear who it’s dealing with?

Introducing Myself

My name is Melanie O’Brien and I was diagnosed with Young Onset Parkinson’s Disease two years ago at the age of 41. I am by no means alone in receiving an early diagnosis, but it is generally recognised as a condition affecting those who are much older. If I start by saying that I am truly grateful that I was diagnosed with Young Onset Parkinson’s Disease, I hope you will believe that I am not trying to be sensationalist or saint like; I am however being truly honest.  This condition happened for me and not to me; it is forcing me to make changes to my life and I am now happier than I have ever been.

I’ve always been in a hurry to get things done, and evidently, I couldn’t wait to get Parkinson’s.  When diagnosed I felt helpless, numb and lonely; I hit rock bottom, and I don’t apologise for that as I’m only human. I needed to grieve, and it was a perfectly natural reaction as I was in shock and despair. No one way of grieving is better than any other and I adopted the stiff-upper lip approach for my friends and family as I couldn’t stand watching them in pain, but the mask came off when I was alone. Parkinson’s dominated my every thought and I couldn’t see any hope. 

I soon realised that couldn’t keep brooding. I decided to ask for a miracle. I’m sitting at my laptop excitedly writing a blog about having a diagnosis of Parkinson’s Disease, surely that is a miracle in itself? I believe that our biggest struggles are our best teachers, so what lessons was I being directed to learn? What if this diagnosis was a blessing and not a curse?

Parkinson’s is a disease that causes in-balance, and I was someone who was lacking any balance in my life; I worked constantly and so had no work-life balance. I sacrificed sleep, meeting friends, relationships and exercise all in an attempt to try to get through an endless to-do list. Parkinson’s disease was telling me that I needed to park some things now and ease up, my life was out of balance and crumbling around me. I craved equilibrium and peace and so perhaps Parkinson’s was protecting rather than attacking me? Your physical body is a reflection of your inner self, and healing will not happen until you listen to your body, I hadn’t shown myself love or compassion and so here I was…

I took the medication prescribed but I knew that there was more to do; I decided to treat the causes rather than symptoms. Sometimes we need a wake-up call in order to wake up, my body did me a favour that I refused to do for myself.   My nervous system was on overload; I was a control freak and so was given an illness that made me lose control; I was out of balance and so lost balance, I was a perfectionist who lost the ability to do things perfectly and my chronic fatigue was a reminder that I needed to get more sleep.  I had to take responsibility and trust that I was losing myself in the fall so that I could find myself in the rising.

So, it was time to rebalance; it was time to make my own dopamine (which I had stopped producing), change my neurological circuitry, leave behind self-destructive habits and literally become someone else. I also had to believe that this was beatable! The ego will tell you that you are doomed, it will instil fear and doubt, but if you do your research, you will see that so many people have reversed or halted their symptoms from Parkinson’s Disease and indeed many other conditions.  Recovery happens; but you must believe in the possibility that it can be done. As far as I am concerned, healing is on its way. I can be a slave to my story, or trust in my own ability to heal myself from within.

I found this support through a wonderful set of holistic healers who dusted me down and started working on me from the inside out. I use homeopathy, attend regular reiki sessions, healing meditations, yoga classes, hypnotherapy and CBT, I also immerse myself in books about positivity and healing from within. I have been a vegetarian since the age of 13 and became a vegan shortly after diagnosis as I knew that I had to be very aware of what I was fuelling my body with. I do weights at the gym and run; I refuse to let my body just give up and waste away. I will not be healed overnight but I am laying the foundation to do so.

I can’t always control my body, but I can control my mind. I found inspirational gurus, became an eager student and became my own health advocate. I live in a constant state of gratitude. I also let go of my anger with Parkinson’s as I know that someone somewhere is sitting in a neurologist’s office being given a diagnosis that is much more aggressive and life-changing.   

I am very excited about the future and the opportunities being created by Parkinson’s; I have just started my own blog, and I hope to start raising awareness of Young Onset Parkinson’s and to help others in their journey towards healing.

When you live with Parkinson’s you never know what a day brings, so like it or not, every day is full of uncertainty. To a control freak like me this is extremely frustrating, but I know that I am being guided to release control and trust; it’s time to fall into the arms of uncertainty. It’s time to say ‘yes’ to the adventure and trust that it will work out better than I could ever have imagined…