“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.”
I am awakened by the hunger, but as I awake, the tiredness awakes! I am unsure of how much time has passed since I last ate. The darkness has crept into the room, a trademark sign of the night’s arrival, informing me that yet again, another day has passed. I need to eat but I can’t move. I am too weak and I’m too hungry!
Sometimes it feels like my heart is beating too fast, other times the beat is just so strong I think its irregular rhythm can be seen protruding through my chest. With this comes a pain, a dull throbbing pain that can lurk in my chest for hours, its intensity fluctuating with the hearts beating. Then there is the stabbing pain, which is somewhat regular too; it pierces through my heart and reaches up along my shoulder. Fortunately this pain is less frequent but it can often be rather breath-taking.
My fingers regularly turn a dark shade of blue as do my lips and toes. Upon awaking after sleep I am unable to feel my hands and feet. This is due to my heart being unable to pump the blood effectively around my body as it sometimes only has the strength to pump the blood to my vital organs. Thank goodness it can still manage that!
I feel dizzy most evenings as my heart tires more and sometimes I am unable to talk. Thinking is also a challenge sometimes as I can get easily confused and I find it hard to articulate my jumbled thoughts. This is because my brain is receiving a significantly less amount of oxygen.
I am lying here alone unable to hold back the tears. I am crying because I am alone and I am crying because I can’t ask anyone to come and help me. There are so many people that care about me and I just cannot tell them how much I need someone to help me right now. I feel ashamed of my weakness but I so desperately want help. These conflicting emotions that contribute to my daily battles are unfortunately exacerbating the tiredness. I am so tired of being tired!
I am not and never have been a fan of self- pity. I strongly believe, through personal experience, that when you hit the bottom there is nowhere to go but upwards. During such times in my life it has been the stench of despair and depression that has finally driven me to rise up and fight. I decided that this will be no different!
It was on one of these dark, hungry, lonely mornings that I decided to fight. With the little energy I had I started with the phone calls. I organised for myself a social work service which provided me with a daily care plan and other similar methods of help. I also swallowed my pride and reached out to friends and family for the support I so desperately and almost unwillingly needed. I finally realised that asking for help was in fact a sign of strength as opposed that of a weakness. While drowning in my self -pity I had somehow, almost forgotten many of my strongest beliefs and opinions.
I also organised for myself the service of a counsellor. This was much needed for me to effectively deal with the change in my life from a previously proactive busy and driven lifestyle to that of an unwell, weak and scared girl in the depths of emotional turmoil. My counsellor was and is a wonderful and impartial guide throughout this time of struggle and fear. I tell her the same things I tell my friends and family but in a different manner. I can open myself up completely to her without having to protect her from my pain.
Learning to accept my illness and to stop being angry at myself for a physical weakness that is out-with my control has been one of the most challenging issues I have had to deal with throughout this journey so far. I have now realised that this has not made me any weaker but exactly the opposite. I have a strong faith in my emotional and mental strength and I know my physical strength will soon be back with a vengeance once I have my new pulmonary heart valve.
While being almost always housebound with very few good days left, (days in which I have the physical capacity to participate in a light social activity such as visiting friends or a short walk), I have decided to keep my mind as active as possible. I read continuously and try to ‘self educate’ through any sources accessible to me in my physically limited, temporary life. My intellectual and academic interests are rather diverse and I now have ‘all the time in the world’ to pursue these interests. Although sometimes challenging against the fight of the tiredness etc, my knowledge is vastly expanding along with the parameters of my little crazy mind.
This is not a situation I have chosen to be in. This is not a situation that I am particularly happy about being in. This is however where I am in my life at the moment and I have chosen to utilise this and play the proverbial hand that I have been dealt. This is a game I will not lose.