How do you push on?

[IrritableB]

I am positive depression is huge with cronic problems and I am wondering how you push on? How much has your disease taken from you and what have you replaced those things with? Weather it be career or pleasure how do you deal with what you can no longer do?

What do you do when you feel like giving up and letting IT win?

I feel so alone with this somedays and I hate bothering people when they don't truly understand. I feel like my husband wants to ignore it and hope it just goes away. People who have never experienced cronic pain just don't understand. My family has really been shutting it out and change the subject because they don't know what to say. I've lost 40-50lbs and its like nobody wants to comment on it because then it becomes real. I have been sick for 2 years but this past year the weight has dropped and my stomach and joints are worse. I am undiagnosed and finally seeing a gastro... In 2 more months.
Sometimes it feels like they think I'm anorexic and I'm making up the pain. I'm having a really bad week. It's not that the pain is completely debilitating it just won't leave me alone and its mentally breaking me down.

 

[Cross-stitch gal]

Hi and welcome! I know we can all understand where you're coming from. Sorry you've been through so much already. But, I want you to know that there are a whole lot of us here to talk to and, are looking forward to seeing you around!

 

[Jennifer L]

Some days, many this week, I push on by taking my next breath. Until I have either survived, found relief, and hang on knowing I am more than just a disease. A good therapist, can also help you through. You matter. Plain and simple.

 

[UnXmas]

Have you tried telling your family how you want them to support you? They may just genuinely not know what to say to you. There's no set was in which people with chronic health problems like to be treated, so it can be very hard for people to avoid saying the wrong thing. Would you know what to say to someone sicker than you, or would you have known what to say before you experienced pain yourself? Are the members of your family being obviously uncaring, or are they just too uncomfortable to talk about your illness? They may be worried about you, and avoid the subject of your illness because they don't want you to notice that they're anxious about you. Of course only you can say whether or not this is possibly true of your family.

I realise you are undiagnosed at the moment, but if you do have Crohn's, you will for the most part be able to live a normal life with it, it's not the kind of illness that will take everything from you. What is it that you feel you can no longer do?

On a more practical level, are you able to see your GP/family doctor and ask for help managing symptoms while you wait to see the specialist? What kinds of pain relief have you tried? If your weight is dropping dangerously low, it may be worth finding out if you can get an earlier appointment with the specialist.

 

[IrritableB]

UnXmas thank you for your post, that does make a lot of sense that they probably do not know how to react. Everyone seems pretty distant and its frustrating for me. This whole thing is frustrating. I went from 180lbs to 135lbs I am on the tall side so I am getting pretty thin. My joints are very sore this week, everything is just slowly getting worse and my GP doesn't have the answer. We moved to a new town 6 months ago and I asked my previous employer to lay me off. I am on EI and getting sicker, I don't have the strength to go back to work. I use the bathroom so often I cannot do the same line of work and my body has become weak. Do I need a formal diagnosis for medical or disability until I am feeling better?
I compete with horses and ride as a hobby, I am getting too sore in the joints or feeling too run down to ride somedays. I have 1/4 of the stamina I used to and my body feels like it's 80 years old. I have a 4 year old daughter and somedays keeping up with her is difficult. It's hard to keep my mind off the pain when your body prevents you from doing the things you love. I am normally a very active person and I have hard time sitting still. I have not been given anything for pain relief. I have tried bucaspan, the bile acid binding drink (can't remember proper name Chol-something?) tecta and another type of acid blocker with no relief. I am thinking I should talk to my GP tomorrow about pain management. I am so tired.

 

[AJC - Australia]

I can't believe in this day and age that you cant get a diagnosis . … quickly. If you are in the Western World, they should be able to ram a scope down your throat, or up the other end, take a biopsy and let you know inside48 hours!!!! If you have lost 50 pounds, you would think they would pay attention and get you a diagnosis PRONTO.

WHAT IS GOING ON???

IN Australia they would work it out quite quickly, if you were thinking you had Crohns.


I hope you get a diagnosis asap.
I hope your family send you love and support.
I hope you can rest … hard with a 4 year old.
I hope you can CHILL out.

good luck

 

[cantthinkstr8t]

I have a very supportive husband. The rest of my family, not so much. He has his moments where I know he is stressed beyond belief. We all do.

When I am down and out, I look at my daughter. Her and my hubby are the main reasons I push on through. I have one friend who I see on a weekly basis no matter how crappy I feel.

I try to live as normal as possible. Sometimes that means just lying in bed or the couch all day. That is okay-it took a long time for me to learn that. I have my moments-but that's just what they are-moments- and then I move on.

I know-easier said than done.

 

[shamrock15]

In my case, I went through a lot of the "how will I go through life with this?" until the hospitalizations started. When I got a true taste for how crohn's can get, it actually made getting on with the day to day of life much easier. It isn't necessarily fun or nice, but I began to realize just how much more I could get done when I wasn't feeling sorry for myself. Just to clarify, it took me about a decade to get to that point. The next decade, even with severe issues, saw a lot of change for the better for me including career changes, finally developing a social life that resulted in getting married and having a beautiful child before seeing remission (thank you remicade and imuran!). It isn't mind over matter, just making sure you make the best use of the healthy parts of your day. Set yourself goals to help capitalize on those good times when you are able to accomplish something.

 

[Cat-a-Tonic]

Here is how I push on - I find that I need to just take things one day at a time. I can't worry about the future too much because the present takes up so much of my energy. I just tell myself, keep putting one foot in front of the other. Keep breathing. Just get through this day. And then I can lay out, what do I need to do to get through this day? What's really important today?

Another thing, IrritableB - you mentioned that sometimes you feel like giving up and letting the illness win. And honestly, I think that's a normal feeling. And some days, I do let it win - just for that day, though. Some days I call in sick to work, stay home, cry, feel sorry for myself, whine and complain and do whatever I need to do that day. And the next day, I just put one foot in front of the other and breathe and keep on going and try not to let it win the battle two days in a row. I realize that sounds sort of defeatist, to acknowledge that some days the illness does win, but that's reality. I can't put on a strong act every single day, I'd go crazy. Some days I give up for the day, and that's okay because it's what I need to do to be okay.

As for accepting that you're no longer able to work or do certain things - you need to let yourself grieve those things, because it is a big loss. Grieving big parts of your life that can no longer be a part of your life, it's normal and it's okay to grieve those things. I think, once you grieve and find some way of accepting what your life is now, then you can move forward and find out what you can do (write a book? Learn a new language? Learn a craft like knitting?). For me, as long as I can feel like I'm doing something worthwhile and contributing to the world in some small way, then I feel like things are okay. So, personally, I crochet scarves and donate them to cancer patients. Crocheting helps me de-stress, it's something I can do even when I'm super ill, yarn isn't expensive, crocheting keeps my brain engaged, I end up with a usable finished product, and donating the finished products makes me feel really good. So that's how I can keep going, I just need to feel worthwhile in some small way.

 

[buttER]

IrritableB I could have written that.
I also felt I did not have the understanding or support of family (including husband) and friends. They just cannot imagine it and do not see the minute to minute struggle that goes on inside. As if it is our choice somehow. No-one can imagine that level of exhaustion unless they have to endure it themselves.

My nemesis came when I realised I had to look after myself. I cannot rely on anyone to do that for me. Unfortunately. The frustration and disappointment have found their place and I do not spend unnecessary energy on false hopes and expectations. It has made me a stronger person. I will look after myself! I can look after myself! And I do!

I realise some people are in a far better position, they have the support of loved ones. But I will not be jealous of them, I rejoice that there are supportive people out there!

I promise there are better times ahead. Be strong for yourself, and find daily pleasures in the simple things in life (for me it is nature, just watching plants grow from seeds on my windowsill at the moment makes me happy).

Sending support and hugs your way!

 

[kitt]

Wow, some great responses on this thread....such, sweet, caring people. Isn't it nice to know you are not alone?

 

[UnXmas]

My nemesis came when I realised I had to look after myself. I cannot rely on anyone to do that for me. Unfortunately. The frustration and disappointment have found their place and I do not spend unnecessary energy on false hopes and expectations. It has made me a stronger person. I will look after myself! I can look after myself! And I do!

King of Orange, would you mind explaining what you mean by looking after yourself? As I get sicker - I have a progressive genetic illness besides Crohn's - I'm becoming less and less able to look after myself. Even with just Crohn's, this would still in a way be true, as I've had surgeries where I've been completely dependent on nurses and then, when discharged, completely dependent on my mum (even though I'm an adult). There have been times in the past when I couldn't rely on family, but then I was in hospital. I just don't see how sickness and looking after yourself go together; when you reach a certain severity of sickness you don't have a choice, you're physically unable to do the most basic things - like use the bathroom - without someone to help, and if you have no family or friends to do it, professionals step in.

 

[buttER]

Dear UnXmas
I mean looking after myself more in the mental sense than the physical. I am married and I thought the marriage vows were to look after the partner in sickness and in health. Well unfortunately my partner does not see it like that and told me so. I spent a long time expecting emotional support as well as empathy and some sympathy from him but not getting it. Which made me frustrated and upset. And when you are already weak from illness it is not good to be in such a mental state too. So at some time I realised I had to fight for myself because no-one else was going to do it for me. Even if I can't be physically strong I can try and stay mentally strong, and that helps the physical side to some extent too.

A fair word to my husband, he would take over some of the more practical things if I could not move from the bed/house. We do not have any family in this country and seeing as we just moved here there are no good friends to count on (although already some who I know I could call in an emergency).

 

[girlygirl]

I have tough days too.. And limited support. I get really down. My hub doesn't get it.. Any of it .. It being the pains, arthritis, d, ulcers, fatigue,etc... The list goes on. I feel like I get griped at a lot for not doing enough.. It sucks, but I keep on.. Just have to. And when I'm at work its my escape .. I can put on some music (ear buds).. and try to make the best of things.

I also enjoy the good days.. Even though others don't understand there's always friends here. And that it's so comforting!

Wishing you well.

 

[Izzie]

One thing that has helped me is finding something enjoyable to do even when I feel horrible and have to stay home/in bed. Could be reading, could be a TV show, or playing games, or knitting - anything really, that makes those really bad days not quite so horrible.

 

[Marlena]

My husband has early stage Alzheimer's and he tries, but he is limited. Some days I just veg out and say the heck with it. other days I try to view it as an adventure in learning a new skill, some days I rebel as much as possible. it is so hard to be patient with my hus., as I am sure it is with your daughter and I have to say sorry a lot and try not to hate myself. I try to do the things I can that I enjoy. I play with my cats. Go lean on your horses. Animals we are close to can care for us in return or at least, be a comfort. Find joy in small things. At one bad point, it helped to notice how my cat climbed stairs. We're with you, we understand.

 

[txgal]

I've been clicking along fairly well with my meds and diet. Then there is today, when you wake up in pain and have a migraine. Hard to focus and not worry and it can definitely wear on you mentally. It's just that reminder that you have something that has no cure. I take it day by day and sometimes hour by hour. I have found meditation to help me and finding something funny to watch on TV. All I know is that anyone with this disease is an extremely strong person!