It all started two years ago. For months, I felt exhausted, sick, and would go to bed without eating. Then one day I woke up with a swollen lymph node. My neck went into spasms. I couldn\u2019t keep food down. I couldn\u2019t walk because of dizziness and was in hospital for 7 days. Doctors couldn\u2019t find out what was wrong with me. I knew I was still ill, but I couldn\u2019t bear to be unwell, so I pushed myself every day. I started to get pain in my arms and legs, shakiness, and weakness, but I still went into university, had a social life, and went out.\u00a0 I never told anyone how ill I was really feeling inside because I didn\u2019t want to be a burden. I desperately wanted to be strong and do all the things I wanted to. I already used to get panic attacks and only a few people knew that.<\/p>\n
I am generally a happy person and I didn\u2019t want my mental and physical health to make me feel unable to do things.\u00a0 Now, I wish I hadn\u2019t tried to hide it and push myself so much. Last August, my legs collapsed on the way back from university. After a few months, I was diagnosed with Lupus, an autoimmune condition, but my consultant says I have symptoms and so much fatigue and pain that cannot be explained by Lupus. I have ME\/CFS too.<\/p>\n
The worst thing is the loneliness. I used to see people every day. I loved being around people and I still do. But, now I spend most of my life at home\u2014mostly in bed. I can\u2019t do much by myself at home. I crowdfunded a wheelchair recently and I can leave the house, but my illness prevents me from going out much.\u00a0 Sometimes I think I am feeling better, but if I push myself even a little too much, the pain, nausea, shakiness, dizziness, and exhaustion starts and doesn\u2019t go away for days. My panic attacks have become worse and I dread night time.\u00a0 The pain is so bad in my legs and arms that I cry in the mornings and at night. I used to look after my mother and do things for other people, but now that I am ill I cannot do that anymore and I feel even more of a burden for it.<\/p>\n
I love the days when my boyfriend stays with me and the weekends when my friends visit me, bring me takeaway food, and chat with me. \ud83d\ude42\u00a0 I hope that one day soon I start to feel better and that medicine gets a better understanding of how to help people with ME\/CFS. \u00a0I\u2019ve been told in the past to just get up and walk, which makes me feel like it\u2019s my fault, when the truth is I would give anything to go back to the way things used to be. I feel broken, but I know I have to take each day as it comes.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS It all started two years ago. For months, I felt exhausted, sick, and would go to bed without eating. Then one day I woke up with a swollen lymph node. My neck went into spasms. I couldn\u2019t keep food down. I couldn\u2019t walk because of dizziness and was in hospital for 7 […]<\/p>\n","protected":false},"author":1,"featured_media":668,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2020\/07\/rosa_r.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/676"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=676"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/676\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/668"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=676"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=676"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=676"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}