I'm FINE. How many times a week do you hear yourself answering with that reply? Work colleagues, friends, family asking 'how are you?' My default reply: 'Fine thanks'. That one word to you sums up everything yet when answering, the person enquiring may not understand the full meaning of the word.
F.I.N.E = Frustrated. Insecure. Neurotic. Emotional
Frustrated. I'm frustrated that I have endometriosis. Frustrated that I find it so hard to do 'normal' daily things . If I have a busy day today then by tonight or tomorrow I know its going to catch up with me big time! The cramps will come, the pain will increase. I cannot plan things. There's no exact pattern with endo. It can creep up on you out of the blue. Some days you know straight away it's going to be a bad day. Other days it can be so unexpected it will catch you out. You cannot predict which will be good or bad days. You either just have to say no or take your chances, say yes to a plan and hope you'll be ok. If you're not you end up cancelling last minute...again. That's frustrating. More so is the line 'but you look ok'. Yes, at the moment I may do. But you don't see me curled up on the floor unable to move because cramps are so strong. You don't see me crying and breaking down when the pain is so bad I don't know how I'm going to get through the next wave of pains. You also don't see that I've become a good actress. I may look ok to you but inside the pains are hurting so much I couldn't begin to describe them.
Insecure. I get insecure thinking I'm alone in this. Endometriosis can be a lonely disease. You go through stages where you think pain and extremely heavy periods are normal. Then you realise they're not. But who do you turn to? Who else do you know gets the same symptoms as you? I am so grateful I have an amazing mother and brother who are always there to cheer me up and support me every day. I'm also so thankful that I found my endosisters who know exactly what I go through as they experience it too. On your lowest days you may feel insecure and alone but remember endosisters are always there to chat too.
Neurotic. I feel like this a lot. Before I was first diagnosed I had endless appointments with my doctor. I knew something was wrong, but my doctors at first didn't seem to agree. They said it was just IBS. To go home and change my diet. I knew it was something more but how could I prove it? All the tests and scans were done. Every single one came back clear. I did start to doubt myself. Was I really in that much pain? Yes I was, but endo can't be seen physically. Persistence is needed. If you think there is something wrong you need to voice it. More recently the neurotic feeling is creeping back up on me. I've decided to go for private healthcare and I have an appointment this Friday with a specialist. However already I'm thinking what if he doesn't believe me? What if he thinks it's not as bad as i think it is? If I'm being stupid going private and should just wait a bit longer? Trying to reason with myself he won't think any of the above. He specialises in endo and has experience.
Emotional. So much so, some days I feel like an emotional wreck. I can go from being in good spirits to feeling so fed up and down in an instant. I can cry for no reason at all and find I can't stop. The mood swings are definitely that. Swings. One minute your happy, the next you could scream and shout and scream again. The phrase an emotional rollercoaster is an understatement. It's very tiring.
So the next time someone answers that they are 'fine'...Please remember it is not as straight forward as you think. They know what fine means to them, but it would be another exhausting avenue to go down to explain this to others.
F.I.N.E = Frustrated. Insecure. Neurotic. Emotional
Frustrated. I'm frustrated that I have endometriosis. Frustrated that I find it so hard to do 'normal' daily things . If I have a busy day today then by tonight or tomorrow I know its going to catch up with me big time! The cramps will come, the pain will increase. I cannot plan things. There's no exact pattern with endo. It can creep up on you out of the blue. Some days you know straight away it's going to be a bad day. Other days it can be so unexpected it will catch you out. You cannot predict which will be good or bad days. You either just have to say no or take your chances, say yes to a plan and hope you'll be ok. If you're not you end up cancelling last minute...again. That's frustrating. More so is the line 'but you look ok'. Yes, at the moment I may do. But you don't see me curled up on the floor unable to move because cramps are so strong. You don't see me crying and breaking down when the pain is so bad I don't know how I'm going to get through the next wave of pains. You also don't see that I've become a good actress. I may look ok to you but inside the pains are hurting so much I couldn't begin to describe them.
Insecure. I get insecure thinking I'm alone in this. Endometriosis can be a lonely disease. You go through stages where you think pain and extremely heavy periods are normal. Then you realise they're not. But who do you turn to? Who else do you know gets the same symptoms as you? I am so grateful I have an amazing mother and brother who are always there to cheer me up and support me every day. I'm also so thankful that I found my endosisters who know exactly what I go through as they experience it too. On your lowest days you may feel insecure and alone but remember endosisters are always there to chat too.
Neurotic. I feel like this a lot. Before I was first diagnosed I had endless appointments with my doctor. I knew something was wrong, but my doctors at first didn't seem to agree. They said it was just IBS. To go home and change my diet. I knew it was something more but how could I prove it? All the tests and scans were done. Every single one came back clear. I did start to doubt myself. Was I really in that much pain? Yes I was, but endo can't be seen physically. Persistence is needed. If you think there is something wrong you need to voice it. More recently the neurotic feeling is creeping back up on me. I've decided to go for private healthcare and I have an appointment this Friday with a specialist. However already I'm thinking what if he doesn't believe me? What if he thinks it's not as bad as i think it is? If I'm being stupid going private and should just wait a bit longer? Trying to reason with myself he won't think any of the above. He specialises in endo and has experience.
Emotional. So much so, some days I feel like an emotional wreck. I can go from being in good spirits to feeling so fed up and down in an instant. I can cry for no reason at all and find I can't stop. The mood swings are definitely that. Swings. One minute your happy, the next you could scream and shout and scream again. The phrase an emotional rollercoaster is an understatement. It's very tiring.
So the next time someone answers that they are 'fine'...Please remember it is not as straight forward as you think. They know what fine means to them, but it would be another exhausting avenue to go down to explain this to others.
#MyEndoDiary
You are definitely not alone in this!!! I totally understand how you feel and I am so sorry that you are having such a rough time.
ReplyDeleteIt's so ironic that you wrote about this acronym because I too found it and wrote about it when I felt I had reached my breaking point.
Anytime you need to talk or encouragement or just a sounding board, I, and all your other endo sisters am always here!
Take care of yourself. I will be hoping that your appointment with the specialist goes well and you find him/her to be compassionate and understanding and most importantly knowledgable!!
Much love xxx
Thank you Joanna.. Glad you understand what i mean! Thanks for being there, i always know i can send you a message if i wanna chat so i thank you for that. Please know im here anytime too. I'll let you know how it goes friday! x
ReplyDeleteEXACTLY! Well said. I feel your pain girl!
ReplyDelete