Hopless

[social me]

I am glad to have this forum. I tend to not share my feelings with the ones I care for and love when I am like this because I dont want to burden them and they had heaard the I am so tired and lonely (fatigue keeps me in bed) speech plenty of times. My husband is a good husband but he doesnt share his feelings either. Wait, we do its just when things are so down I think we keep to ourselves to not unload on the other but my husband doesnt tell me he is tired, he shows no emotion its like hes in survival gear and thats it. Which I understand he takes care of everything 2 kids, home, job etc. I am sure its tiresome but God what I wouldn't give to have energy and be well and play with my children. My son has been going to dyacare and when I was well which wasnt often i would keep him, now that I am in a flare ( just diagnosed) I am wiped out. This morning I helped him get ready for school dad usually does that too. but I was awake so I helped him get dress and my 3 year old son looks at me and says momma I want to stay home, I had to tell him "you can't mamma is sick" so he kissed me and said there you are better. He whimpered when he couldnt stay home and it killed me inside. This disease is just another problem on my already long list and everysince my son was born prematurly i havent been the same emotionaly and physicaly I was to be a stay at home mom and instead found out I couldnt have more children. I am so down today I feel like I am dying inside, I have been on remicade for 2 yrs for other issues and the fact my inflamation is so bad means its not working but he wants to keep me on it and do another colonoscopy in 6 weeks to c if it helps if not prednisone. asocal has me constipated and my depression and anxiety meds dont seem to be helping latley. My b 12 shot I hoped would work has left me with little hope.I have trouble with vomiting and with fatigue the most. Anyway their it is. I have been spending majority of my last 3 years in my home going nowhere just laying in bed exhausted or sick and I am tired and being alone everyday doesnt help. i once was strong, confident and positive. Who I am now is none of those things and I wonder if I will ever feel my old self again.:yfrown:

 

[teeny5]

I am so sorry to hear that you are feeling so down right now. This forum is great for finding support and friends that know exactly what you are going through. My husband is not a touchy feely guy either. I figured out long after that he didn't show emotion when I was sick because he was trying not to stress me out more. He knew it was hard for me and he was trying to be the strong one.

What helped me a ton, besides this forum, was finding little things that made me happy. Painting my nails is a tiny little thing, but it made me feel pretty when I literally felt like a pile of poo! I would also read cheesy gossip magazines and play video games. I had to really take things one day at time. Not think about yesterday or how I might feel the next day, but rather here I am today and how am I going to make the best of it.

I don't have kids, but I do have dogs. Even though I couldn't take my dog out to play I would find ways to play with her that took little energy from me. I would sit at the end of the hall or at one end of the yard and throw the ball for her. She had fun and I felt good about at least trying to give her some exercise. As I felt stronger I would take her for short walks.

I do hope you feel better soon. Keep us updated.

 

[social me]

Teeny, thank you, you are right I did have a quick conversation and he told me it is hard to be silent but he knows I tend to self hate and blame myself so he keeps it inside. I love your positive attitude, I use to be like that, lately I feel the real me is fading, but like many of the journeys in life its a struggle but somehow you pull through. Thanks for letting me know I am not alone and for taking the time to cheer up a stranger.

 

[teeny5]

No problem! I have been through what you are feeling. I felt so depressed and uninterested in life...I had never felt that before. I felt like my whole life was crap. I had never been sick, never broken a bone, never been in the hospital and then BOOM full blown Crohn's flare. I thought for sure my husband would leave me. I couldn't focus at work...eventually the doctors pulled me out of work. I was just beginning to think about children and with the disease was being told "absolutely do not get pregnant till you are healthy again." All this was devastating.

My point is...I got through it and you will too. Try not to dwell as much as you can. You just need to find something that keeps your brain busy...books, puzzles, magazines, movies...what ever you are into. I was never positive before the disease, but I think having to battle with it and forcing myself to be positive has helped me to see the brighter side. Whenever I am feeling down or alone I just stop...breathe...and pick something to do that makes me happy and clears my mind. Sometimes your own mind is your worst enemy.

I promise someone will always be here to help you and cheer you up. (((((HUGS))))

 

[silveyk]

Hello Social Me,

I am Dr. S. My spouse has Crohn's. She has been having similar troubles. (regimen: steroids, 6-MP, Humira, laxatives, ginger, and probiotics). I do not know your insurance status, but if you can, consider a second opinion. Your GI doc may not be the best doc for you. Also, I would suggest seeking counseling. Crohn's is not only a big physical burden, but also a big emotional burden. Friends are good...as are Crohn's group. But, sometimes you just need to vent...no sugar coating...or second-guessing if you are being PC...you just need to let out all the pent up fear, anger, hurt, and frustration. Counseling can also put things into perspective too. I wish you luck.

Dr. S

 

[social me]

Dr. S I appreciate your advice and I have though about that, however when I checked into seeking another doc they informed me that they would simply refer me to someone else in his practice, it needs to stay in network. So I spoke to family doc and he will be receiving everything and he will be the one staying on my blood work and helping me with b12 shots and any exams he thinks I might need. I agreed to that and am thankfull for a good family doc. Does that sound like a good choice or do you have any other advice. I am sorry to hear about your wife I know it is hard on my husband, I am sure it is the same for you as well. I will continue to educate myself and advocate for yourself otherwise I would still be undiagnosed. God bless you.