No one understands

[sammy0461]

Im just gonna vent right now. I've been in a flare up for quite some time right now and all I do is lie in bed all day and don't do much. I don't have energy to help clean the house or do the dishes or help cook dinner. Since I'm always in bed, my mom always yells at me to get a job because she won't support me anymore and I do nothing with my life. She keeps saying I'm lazy and she doesn't want me here anymore. I mentally and physically can't get out of bed. I am in so much pain everywhere and I keep going to the bathroom constantly. She hates that I sleep in but I do that because if I wake up I'll feel the pain and run to the bathroom. I help some days when I'm a bit OK but I can't be helping everyday. She thinks I can just get up at 7 am like everyone else and work and then clean. I wish I didn't have to stay in bed all day. She also keeps saying that she's gonna give away my puppy because he isn't trained because Hes still young. She says instead get a boyfriend but i don't want one and how am I supposed to get one when I can't even leave the house to make friends?? I'm alone and I have no one. Someone please help

 

[Clash]

I'm so sorry you are struggling.

Is the GI aware that you are in this state? If you have been on meds for awhile and still having problems then I would definitely make the GI aware. If you have recently started meds then it can take some time for them to be at therapeutic levels.

Sometimes it can help to write out your feelings both physical and emotional and present them to your lived ones. It also helps to seek out therapy and possibly involve your emotional support system so they can be aware of what you are going through.

I help you are feeling better soon. This is such a difficult, silent, insidious disease but that shouldn't allow those you love to ignore what you are going through.

Hugs!

 

[24601]

I'm so sorry that you aren't getting support and understanding from your family. This disease is an awful lot to cope with, especially if you feel alone.

I think Clash's idea about writing your thoughts and feelings in a letter to your mom might help - it helped me when my mother wouldn't listen to me and was making assumptions about why and how and never giving me a chance to explain. Somehow putting it on paper made her pay attention. Even if she won't read it or understand, it can help to write it down and get your feelings out.

I know a lot of what you are feeling and know that you are not alone, even if it feels like it. I understand that it does and I wish we were right there to support you but know that we are here on the forum and you must come and express your feelings here so that we can support you here :ghug:

Clash is quite right too (yes I'm just repeating advice but I want you to know there are more of us here who are here for you!) that you should make sure your GI is aware of everything that you are experiencing. Keep a symptom diary. Maybe tell your mom you are feeling so unwell that you are seeking more help from your GI as this is not how you want to live - hopefully she can see that what you want is of course to be healthier. We know this but sometimes the people who live with us get so used to us being sick that they think it is our normal and then they expect us to be able to function like that. I'm not excusing it because it shouldn't be like that but perhaps making it clear that you are aware of all that you cannot do and very much want help to feel better and live a more normal life then she might take that on board.

Also I would ask your GI and/or your GP if they can refer you to a counsellor who can help you deal with the impact of a chronic illness - and maybe even do therapy sessions with your mother too.

Might there be someone locally who could help you train your puppy? Perhaps there's someone who would volunteer to help? Just brainstorming but I think your puppy is part of your support system and it's important for you two to stay together as an animal is good company when you're not well and very therapeutic.

We're here and we want to help. Please post as much as you want or feel free to PM me

 

[SupportiveMom]

This disease totally sucks. If the disease doesn't exhaust you, explaining how crappy it makes you feel will.

A letter to your mom is a great idea. Even if you chose to never give it to her, you will feel better after writing it.

Where in Ontario are you? As you can see I am in Toronto. Something that helps me & my teen is the Crohn's & Colitis Canada Chapter group. It is my one time I am surrounded by people that "get it". The Toronto chapter meets once a month. There are groups in Durham, Markham, London, and a few other places. If you are interested in hanging with some fellow crohnies PM me & I will help you get connected.

Do you have any hobbies? If you like to write or draw they are great tools to manage through this. They also don't require a ton of energy & take your mind off of things. Stay strong, we are here for support!!

 

[wellen1981]

We understand.


Also consider showing your mom the vent post you made.
Sometimes it's hard to explain things in the moment but your post here pretty much sums the reality up quite well.

 

[jamilea]

I'm so sorry you are going through this. Have you thought about finding some kind of support group meetings for IBD? Maybe call the local hospital and ask if they can point you in the right direction or search online. This community is great, but you also need an in person support system. You can't be staying in bed all day. Take it from someone who knows. You gotta get out, even if it's just once a day to sit in the sun and breathe in the fresh air, observe nature or something. You gotta get out. I know it seems impossible, but you can do this!

I agree with the person who mentioned counseling. It doesn't mean you are crazy. It just means that sometimes in life, we need someone who is neutral to listen to us and help us in our quest to manage a condition that nobody deserves.

You deserve quality of life! Believe that . Hugs.

 

[EricaDawn]

I can definitely relate to how you are feeling. My boyfriend and I are having so many problems right now because of Crohn's disease and his lack of understanding. He thinks that there is absolutely nothing wrong with me whatsoever, and it is my "crutch" to get out of doing things or even getting out of bed because I just want to be lazy and worthless, (as if that is my big goal in life). I've had Crohn's for about 20 years and also ulcerative colitis, and he's been around for the last 5 years in which I've had 2 colon resections for blockages (1 in 2011 and another in 2014), and 1 fistula surgery (2011 and another one before him in 2000). He tries to tell me how to deal with my problems just because he reads something and also tells me it shouldn't be that bad and I'm making it into much more than what it actually is. If he could feel for just one day what all of us go through day after day after day, I think he would b curled up in the fetal position crying as I have done many many times. I've told him I need his support and understanding, not his constant harping and controlling about what he feels I should be doing. He tries to set a bedtime for me, and thought I'm constantly tired, between the sweating, the pains, and the constant feel and NEED to use the bathroom, I have a hard time sleeping. Once I do get to sleep, I sleep half the day. He says it isn't fair that he has to go to work while I'm sitting at home being, again, "lazy" and "worthless". I don't play the "It isn't fair that you can feel healthy and good day after day" card because I don't want it to be an excuse. It's just how it is.

 

[wild_one353]

I had a similar experiance when first being diagnosed. Try giving her some documentation that explains the symptoms, reassure her you will do whatever it takes to improve your health, get on meds see your doc, perhaps your mom feels overwhelmed too it's mysterious, people who do not take the time to learn about these health challenges. tell her there is hope. I'm telling you there is hope, but it can be a rough road ahead, it will be easier if you work together. understand her ignorance and fear, and hopefully she will understand your illness.

Try making some diet adjustments, they can help a little with symptoms avoid refined sugar and lactose, read breaking the vicious cycle and learn about the SCD diet.

 

[thecrohnslife]

I am so sorry you are going through this without any support. It's really hard to deal with this disease, but you must always remember that things can get better. You have to be strong and keep fighting. Best of luck to you.

 

[aurumjd]

Always remember you are not alone. I think many of us here have been surprised that people you thought would be there for you fall short. When that happens I log in here. We are our own tribe. Hoping for better days.