Living With An Invisible Illness

The pain begins the moment I wake up, like a rumble of thunder it hits me hard and I struggle to breathe. Every action, every thought and every word is a struggle and I drift through peripheral wastelands trying to make sense of this hazy, dream like world I enter. This is what it is like living with an invisible illness, I get angry at the world for not knowing how much pain I am in and frustrated with friends and family because they think I am fine. I have been labelled a drama queen or been told it is because of stress. Sometimes I am told it is my fault that I am sick but I know that it is not, when you are given diagnosis after diagnosis you don’t know what to think any more. I don’t know where I am coming or going, taking on far too much to compensate for the pain. I want to forget that I am in pain and live a day without being reminded of the torment I am in. Even forming a legible sentence is difficult for me and I cry into the gaping stretches of the night where everyone is sleeping and I am all alone. It hurts to be so sick all the time and not know why.

Sure I have been told its this and that and been given medication but nothing has worked. I have chronic back pain and the pain in my upper back is intense. I am undergoing physio but that doesn’t stop the pain, sometimes it makes it worse. I can’t sleep at most I have four hours a night too caught up in a world that doesn’t exist inside my head. When I do sleep its shattered by tortured nightmares, tears stroll down my cheeks as the vividity of my life comes into play.My limbs feel heavy as I trudge through life, the bags under my eyes are a testament to sleepless nights, I have severe depression and anxiety and there has been moments where despite my fear of death I have envisioned what it would be like if I died. Would anyone care? Would anyone remember what I was like? I would never know what it would be like to grow old and it scares me. Even writing this scares me because I don’t know what the future holds. I don’t know who I am or what my life is about. What is the purpose of me being on this earth? I have to pretend to be stronger than I am because I know that if I gave up there would be no point to my existence and that is a fact I cannot accept. My blood sugars are low I collapse and black out on a regular basis and last week I blacked out from the top of my bed and fell grazing my entire leg, the blood flowed and I couldn’t breathe. I had gone into crisis and it scared me because for that moment in time I didn’t know what had happened. All I could see was blood and it sickened me.

I am lucky in some ways because there is always going to be someone worse off but we all face our personal struggles and this is mine. I throw up nearly every day because I am too sick to eat food and water and my stomach is crippled with intense pain. I have chronic gastro problems and a hernia that causes acid reflux, I have several health syndromes and wavering unfinished health diagnoses suspended in mid air. Tests say I am fine but I know I am not, how can I be when every living moment is a struggle, when the pain doesn’t subside? I can’t even take Ibuprofen or paracetamol because my Gilbert’s means that my system does not tolerate those substances. I can’t eat the foods I loved because they cause too much pain. Tonight I had Quorn meatballs with tomato sauce and spaghetti but within minutes it left my system. Within minutes I was once again retching into the toilet bowl, my stomach burning in the process. Because of my IBS I can’t eat spicy, fatty, creamy, acidic food without throwing up and sometimes even the healthiest of foods make me retch. But I still enjoy my food, I sit there stuffing my face relishing the time I have before it comes back up.

Some weeks I am triumphant, the pain is low and I think I am getting better, I eat without throwing up and have more energy and enthusiasm for life. But March has been a difficult month health wise both mental and physical and it hurts to see myself like this. I stay positive for the people I love but they never know how I really feel. Sometimes when I offload I am told to stop thinking negative or that it is just a phase but its not. I started having periods of collapse when I turned 16 and by university it became more regular. It wasn’t until third year that the pain got worse, the back pain kicked in, the sickness without vomiting began and for six months straight I had a sore throat, flu and was low in energy. I took on a nursing job to fund my studies in my second semester of my final year and it was difficult. They worked me to the bone, I had little breaks and was physically and emotionally exhausted. It was a year ago exactly that I collapsed on a patient and had to quit the job, they wanted me to come back but I couldn’t do it. Doctors told me that I couldn’t do manual labor jobs any longer because the strength in my core and back had gone. I stopped being able to eat and my stomach shrunk, I felt dizzy and sick all the time and negative emotions began to take over. Intense depression like I had never felt before attacked me like a virus and I lost friends because of it. Yet despite how sick I was I completed my studies and got the degree I had always dreamed of doing. It felt good to know how strong I was and in moments where I doubt myself I look back on this moment and remember that I am a warrior.

I didn’t want to be a downer and at this moment in time where I type furiously on my laptop keyboard I am in pain but emotionally I feel ok. I feel ok because I know that I have readers who love me for who I am and accept my flaws and imperfections without question. It is this spontaneous attitude that I can learn from and I need to teach myself to be more open with my friends and family about how I am feeling. Instead of telling the truth I tell them I am fine because I am more concerned about them and I don’t want to seem selfish by telling them how horrible I feel. If I didn’t have this blog I know I would be a lot worse and one person that keeps me going is my beautiful, selfless aunty who beat cancer two years ago. When I feel low or down I think of her and how strong she was to have overcome her illness and have survived. So I want to end on a positive note and thank everyone for being so supportive of the real me. I have highs and lows but in between those highs and lows is security and I am so grateful for it. Despite not having the energy I used to and not being able to drink alcohol or eat certain foods I remain optimistic that one day I will be rewarded for my trials and tribulations.

Do you suffer with chronic illnesses and how has it impacted your quality of life?

Photography- Jumanna Khanom Jumper – PrimarkTrousers- Missguided Sunglasses Firmoo Shoes- Ego Official