#chron's

Bloodwork is showing signs of malnutrition and malabsorption. My weight is stable but low and I haven't been restricting so doctor is gonna be focusing on IBDs like Chron's and UC. The medications he gave me made me even more ill.

I'm going to work, and getting through it. I just don't want anyone thinking I am intentionally ignoring them.

Some things I, as a Chron’s Disease warrior, am tired of hearing and it is not that I am being bitchy or ungrateful for those who care for me, it is that I want you to know and understand what I feel when I hear these things. As I mentioned in my previous post, this is to inform others that dont have Chron’s what I am going through and also to let those with Chron’s know that they are not the only ones who feel like this.

1) You lost so much weight, I wish I could do that. Chances are that you would also lose weight if you were constantly running to the nearest toilet as soon as you have eaten. I didn’t lose weight because I wanted to, I lost weight because I am on 5 different medications that have the same side effects.It is scary losing 10kgs or more in less than 6 months because of Chron’s, it is not something that you want to do willingly because chances are that I will still keep losing weight,which is unhealthy.

2) You should get out more. If I could, I would. But mostly I am in so much pain that it is an accomplishment to just get out of bed at any time of the day, so I dont really want to ‘get out more’ because that would require me actually having to move. I have days where iI want to go out and enjoy myself but dont push me, when I feel that I can handle the pain and that I will be comfortable going out, I will do so.

3) You should see a dietitian. I am my dietitan. The thing about Chron’s is that it is not the same for everyone. I might be able to eat bread but another person with Chron’s cant. So a dietitian wont be able to help me because they dont know my body. I know what I can eat and what I cant eat and I really dont need to be told by someone else what is good and not good. If I find something that works with my system, I eat it and if it doesn’t, I avoid it. So thank you for your concern but I dont need to see a dietitian.

4) Mind over matter. If it was that simple, I wouldnt be writing this blog. It is easy for someone who doesnt have Chron’s to say mind over matter. Everyone thinks that if you dont think about the pain, that it will go away, the sad truth is, that it is never that way. If I want to mope around all day in a blanket and watch movies all day, it is because I am in so much pain that I can barely function. So let me deal with my pain like I want to and just be there to support me, dont tell me that it is mind over matter.

5) You need to exercise more. Isnt that the case in everyone’s lives though? So why should it be different for me just becasue I have Chron’s? I do exercise, when my body tells me that it can handle it. But mostly, I dont, because it hurts too much or because I physically do not have the energy and that is probably because I haven’t slept all night because I have been tossing and turning to get comfortable with the pain.

6) Have you tried herbal treatment? I have tried everything that this planet has to offer. Your home remedies or herbal methods really wont make any difference. I know medication always is harmful to your body but I trust my doctor enough to know that he will take care of me. The treatment I am on is working for me and that is all that I care about. Thank you for your suggestion but I will stick with what I know works.

7) You are so moody today. Would you not be moody if you were me? Of course I have my happy days but when I am moody please understand why. It is because I am dealing with pain that no one can imagine and I am trying to keep myself together and not lose my shit (excuse the pun). So I am very sorry that I am ruining your happy bubble with my moodiness but this piercing pain in my body seems to have stolen all my happy today. Maybe tomorrow my happy face will come visit.

8) How are you feeling? I know you just care and want to know how I am coping, but for the love of hell, do you really want to hear my 50 point list of complaints every day? I will probably just say I am fine or say I am not too well today but I really am not going to get in to all my aches and pains every second of the day. Ask how I am feeling but just let me answer in a simple manner.

9) You look better today. Maybe I am and maybe I am not. But I am probably not. So if I look better than I did the day before it is probably because I put on an extra layer of make up to hide the dark circles or because I took some painkillers that are making me pretty happy at that moment. The worst thing to hear that is you look better than the day before and to be honest there is no real reason for that but it is just simply because I probably am not better.

10) My brother's friend’s sister’s boyfriend has Chrons and he [enter some random cure or diet here] why dont you try it? As I said before, Chron’s is not the same for every person so your brother’s friend’s sister’s boyfriend might have found what works for him, but chances are that it wont work for me. So thank you for your advice but I will stick to my plan.

11) But you dont look sick. That is the most common thing that I have ever heard. It is like saying to someone who is gay that they dont look gay. I am sorry I didnt wear my I have Chron’s badge today, I will be sure to put it on tomorrow. Just because I look happy and I am living my normal life, doesnt mean that I am not sick. I want to be normal and I want to be happy, so when you see me in that moment, let me be. I probably am still feeling like total and utter crap but I decided to live my life anyway. You cant see Chron’s Disease on the outside so please dont tell me that I dont look sick.

12) You should get out of the house. Trust me I try. When I feel like I have the energy I take that opportunity to do things that I normally dont do. But I also have my phases (which sometimes lasts up to a week) where I just want to stay in bed or at home and rest because that is what my body is telling me to do. I know myself and my body and I know when it needs rest, so please dont force me.

14) Are you going to cancel on me again? I am sorry I cancel plans at the last minute but that is what Chron’s is like. I might make plans with you for the next day and then cancel the last minute, I dont mean to but I also cant help it. Chron’s is very unpredictable, one minute I can be fine and the next I am not. So I am sorry that I could make your dinner party and I really am also not sorry because I am looking after myself and if you cant understand that, then I am here to help you understand. When I cancel it is not because I am lazy but it is because I am in so much pain that I just want to lay in bed and sleep it off.

15) That’s not good for you. I am tired of being told whats not good for me or who can be around me. I am tired of being treated like I am breakable. I am not. I know people care and I know they dont know how to deal with Chron’s, well shocker, neither do I. But one thing I know is myself and my body and that is why I am tired of being told what is not good for me. If I say that it is ok for me to hang out with you because you have flu, then it really is or if I say that it is ok for me to go rock climbing, then in really is or if I say that it is ok for me to spend the night dancing at the club, guess what, IT REALLY IS. Thank you for your concern but please dont tell me what to do.