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A Letter To The People Around Me...
To those who ask what is wrong with me,
Endometriosis. That is what is wrong, and until you deal with exactly what I do you cannot understand. You may have heard of it but it wouldn’t surprise me if you haven’t. Although it is very common many people have never heard of it. If you haven’t heard of it, feel free to ask what it is, I know you’re curious, but please be prepared for an extremely simplified answer because what it is and what it affects is a long and personal story and unless you want a few hours on the effect it has on my life, the simplified version is a lot better. The simplified version is, my body has cells that grow in the wrong place, this causes my body to constantly attack them causing excruciating pain, low immunity, exhaustion and whole longer list of symptoms. The cells also try and shed away each month causing internal bleeding, inflammation and scarring, and believe it feels worse than it sounds.
To the doctors and specialists,
Why did it take you so long to figure out what was wrong? I know the easy option is to give me Panadol and send me home, but that’s only the easy option for you. It doesn’t help, I am still in agony and still confused as to what is happening. I know you say the pain is normal, but it can’t be, it can’t and I don’t like being made to feel like I am just being a drama queen with the pain, because you aren’t the one dealing with it. I appreciate when you did finally give me an answer, it gave me hope that it would all be sorted out. Then I found out there is no cure.
To my colleagues and managers,
I am sorry that I can be moody, have a short fuse or have days that I am not working to 100%. It frustrates me just as much and if not more than you. It frustrates me that I have no control over how I am feeling, being in agony and still trying to work a 40 hour week is tiring and on top of this trying to deal with the exhaustion from being up all night every night for the past week unable to sleep because of the pain. It really takes a toll and I promise I am trying my best, but sometimes it is just hard. I appreciate when you support me and try to be sympathetic about how I am feeling, but I don’t want sympathy only understanding. I know when you offer me time off work when I’m not feeling well you are trying your best to help, but the thing is, this doesn’t go away, in fact, it is there more often than it isn’t. I still have bills to pay and mouths to feed and really who wants to employ someone who needs to be in bed recovering at least two weeks out of every month? I know no one wants to employ someone who is always tired and can’t work to their 100% either, but I still need to work, I promise I am trying my best and I thank you for your support.
To my close friends and family,
I am sorry that you get the worst of me. You get the leftover mess at the end of a 40 hour working week in pain and physically and mentally exhausted with life. I apologise that I don’t always want to go out with you, I am sorry that I say no I can’t I’m too tired and too sore, I know it isn’t fair but it is not that I don’t want to be there, I really do. It is just that after a long week at work and a consistent fight against my body that I am losing with no control I am tired and I am sore. I am sorry about the calls with tears running down my face when I don’t know what to do with myself because the pain just gets much. I am sorry I am always sick, either vomiting because of the pain or everything else that I catch because my body is constantly trying to fight cells that it thinks shouldn’t be there, leaving it run down constantly and exhausted. I am sorry you have to see this side of me, but your support makes me realise why I chose you as friends and makes me feel lucky to have you as my family. Last of all, I just want to say thank you, thank you for being there for me and doing the best you can to understand what is going on, it is a hard road but I couldn’t do it without you.
Endometriosis. That is what is wrong, and until you deal with exactly what I do you cannot understand. You may have heard of it but it wouldn’t surprise me if you haven’t. Although it is very common many people have never heard of it. If you haven’t heard of it, feel free to ask what it is, I know you’re curious, but please be prepared for an extremely simplified answer because what it is and what it affects is a long and personal story and unless you want a few hours on the effect it has on my life, the simplified version is a lot better. The simplified version is, my body has cells that grow in the wrong place, this causes my body to constantly attack them causing excruciating pain, low immunity, exhaustion and whole longer list of symptoms. The cells also try and shed away each month causing internal bleeding, inflammation and scarring, and believe it feels worse than it sounds.
To the doctors and specialists,
Why did it take you so long to figure out what was wrong? I know the easy option is to give me Panadol and send me home, but that’s only the easy option for you. It doesn’t help, I am still in agony and still confused as to what is happening. I know you say the pain is normal, but it can’t be, it can’t and I don’t like being made to feel like I am just being a drama queen with the pain, because you aren’t the one dealing with it. I appreciate when you did finally give me an answer, it gave me hope that it would all be sorted out. Then I found out there is no cure.
To my colleagues and managers,
I am sorry that I can be moody, have a short fuse or have days that I am not working to 100%. It frustrates me just as much and if not more than you. It frustrates me that I have no control over how I am feeling, being in agony and still trying to work a 40 hour week is tiring and on top of this trying to deal with the exhaustion from being up all night every night for the past week unable to sleep because of the pain. It really takes a toll and I promise I am trying my best, but sometimes it is just hard. I appreciate when you support me and try to be sympathetic about how I am feeling, but I don’t want sympathy only understanding. I know when you offer me time off work when I’m not feeling well you are trying your best to help, but the thing is, this doesn’t go away, in fact, it is there more often than it isn’t. I still have bills to pay and mouths to feed and really who wants to employ someone who needs to be in bed recovering at least two weeks out of every month? I know no one wants to employ someone who is always tired and can’t work to their 100% either, but I still need to work, I promise I am trying my best and I thank you for your support.
To my close friends and family,
I am sorry that you get the worst of me. You get the leftover mess at the end of a 40 hour working week in pain and physically and mentally exhausted with life. I apologise that I don’t always want to go out with you, I am sorry that I say no I can’t I’m too tired and too sore, I know it isn’t fair but it is not that I don’t want to be there, I really do. It is just that after a long week at work and a consistent fight against my body that I am losing with no control I am tired and I am sore. I am sorry about the calls with tears running down my face when I don’t know what to do with myself because the pain just gets much. I am sorry I am always sick, either vomiting because of the pain or everything else that I catch because my body is constantly trying to fight cells that it thinks shouldn’t be there, leaving it run down constantly and exhausted. I am sorry you have to see this side of me, but your support makes me realise why I chose you as friends and makes me feel lucky to have you as my family. Last of all, I just want to say thank you, thank you for being there for me and doing the best you can to understand what is going on, it is a hard road but I couldn’t do it without you.
I would recommend you looking this site over on behalf of your daughter...as well as sending her to it if she will look it over...
http://endopaedia.info/
http://endopaedia.info/
As a mother of an 18 yr old daughter struggling with this horrible disease for the past 5 years I thank you for sharing your experiences and very helpful, sensible advice. It is invaluable. I thank you and hope your journey gets easier and you reach the next better place as soon as possible!
You might want to go back to your specialist and see what else they can do for you to help your pain...I do understand what you are saying as I have been dealing with this stuff so long and feel like it will never end because although I think the endo has been completely excised the damage this disease did in my body will never be fully repairable...but I will keep seeking help to be as well as I can be and I hope you do the same!
Have you been treated for pelvic floor dysfunction? as this can often leave us gals with alot of pain! It's not easy to get under control but it can definitely be made better...I don't know where you are in your journey and what treatments have been done...if you have not had the disease excised by a true endometriosis specialist this is the first place you need to go...and then really work with them to feel your best...it's treacherous and you will have bad days but you can get to a better place! So seek the help you need to get to the next better place...don't give up! Keep going! xxx
Have you been treated for pelvic floor dysfunction? as this can often leave us gals with alot of pain! It's not easy to get under control but it can definitely be made better...I don't know where you are in your journey and what treatments have been done...if you have not had the disease excised by a true endometriosis specialist this is the first place you need to go...and then really work with them to feel your best...it's treacherous and you will have bad days but you can get to a better place! So seek the help you need to get to the next better place...don't give up! Keep going! xxx
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