I don't blast about my illness on social media but it is currently ME awareness week. How do I know that? Because I have had this debilitating disease for 3 years. Every day I wake up in agony, feeling un-rested, knowing that I will continue this cycle of feeling like ass probably for life, knowing there is no cure. Consultants in cardiology and ME have both told me "I'm too young" to be sick, so they don't want to help me. No one can offer me any treatment because, well, there isn't any really. So I wake up, spend my days in bed, and try and remain positive that one day someone will invent a cure that will make me able to work, see my friends, and go on holidays where I won't be stuck in bed in another place, or suffering for forcing myself to enjoy life. I am in debt because I cannot work. I am struggling to pay these debts because receiving benefits for something you cannot prove is a very difficult task. I don't look sick, so I'm harder to believe. I don't act sick when I'm with my friends, because I've grown an incredible ability to hide my pain and sickness. I have lost the majority of my friends because people don't like it when you cancel plans. I struggle to make new friends because well, as I said, I spend 90% of my time bed bound. When I stand up, my heart rate jumps up by between 30-60bpm. This means I'm at risk of fainting every time I stand up. Sometimes on bad days, sitting is hard. Because my body is reacting this way, I'm even more exhausted than having the ME on its own, because every little thing is an extreme effort. So to all my friends, family and my incredibly supportive boyfriend, thank you for understanding when I can't come meet you. Thank you for not getting mad when I can't make it to an event. Thank you for messaging me to see how I'm doing, when you already know the answer. To everyone who took the time to read this, thank you for listening and gaining a little insight into life with a chronic illness ❤️ #chronicillness #chronicpain #chronicfatigue #chronicfatiguesyndrome #me #myalgicencephalomyelitis #pots #potssyndrome #posturalorthostatictachycardiasyndrome #sickandtiredofbeingsickandtired #meawarenessweek #meawareness #rantpost
