Old 04-03-2014, 03:12 PM #1
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Default Trying to work and be an active parent/spouse with fatigue, pain and colitis

I am new to this forum. Well, new to any forum. I didn't know anything like it existed. I am a full-time manager, mother and wife. I have dealt with back pain most of my adult life (49 now).

About 5 years ago, I started getting worse pain all over and developed ongoing headaches 24/7. I couldn't get rid of them, but still tried to work and tried to maintain a household and satisfy the needs of my family, although I don't think I did it very well. Then came the migraines. During my month long bouts with headaches, I would get migraine spikes. Caused by pain I was told. I would get really tired at times, but still forced myself up to work. I passed out on a number of occasions but kept pushing. Every time I would get a diagnosis with some suggestion on how to deal with it, something new would crop up.

Two years ago it was a rare form of colitis. I would struggle to make it to the bathroom on time and was still trying to work. I would have to be in the bathroom every 30 minutes or so morning, noon and night until it was diagnosed. This went on for about 4 months. I have not been one who can be off the medication required to help the flare-up, which my gastro specialist tells me is not common.

The past year, I am hit with severe fatigue, pain, headaches and colitis flare ups. They come from out of the blue. One day I'm fine, the next I can't get out of bed. I am the major breadwinner for our family. I have a fairly new boss who has been somewhat understanding, although she's a work-a-holic so I feel like I'm putting the pressure on her to pick up where I can't.

I spent last year keeping the work going that two years prior took 8 people. I met every deadline and stepped in to help in an area that was without a manager. In October, I had a mild heart attack. That through me for a loop and I developed anxiety. I'd never experienced that before. I thought I was going nuts.....

I feel like I have word vomited on this forum....I've been working on myself, take medication, am no longer feeling the anxiety and am trying to function, but the cycle keeps happening. I've been out of work this week for 3 days. Two weeks ago it was a day and a half. I'm missing more and more work. I honestly don't know what to do or who to talk too. My husband has been absolutely wonderful. My son blew up at me a week ago and told me I was crazy and told me I needed to take care of myself (he's 25 and is now moving out), my friends pity me or tell me it is gut wrenching to watch, or that I have to do better.....I used to play sports and was generally pretty active.

If you've made it through my post. Thank you. Any thoughts or insight would be greatly appreciated.
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Old 04-03-2014, 03:33 PM #2
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

Terbaer, welcome to the forum. I feel for you. I wished I could give you a hug. It appears you went through a lot and you've been working hard to take care of everyone around you. I'm so glad you found this forum, so you can share your problems with others and get the support you need and deserve. Your son is probably unable to fully understand the extent of your illness. It was inconsiderate of him to tell you that you were crazy. You are not crazy and you are not your illness. Reach out to wonderful people here. We're there for you
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Old 04-03-2014, 04:48 PM #3
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

I can not tell you how much your response means to me. You brought tears to my eyes knowing someone understands. I am a very normal, happy, positive individual and my health has been such a challenge. Having my son unload on me was painful, and I agree inconsiderate. I know some day we will work though it. I'm giving him his space and time. I've called my counselor and am going to set up an appointment. I figure she's known me for 20+ years and knows of and about him through discussions. I intend to invite him when I get the appointment set up. If he turns me down, I'll go anyway. I'm slowly coming to terms with what my body is doing. I get frustrated and wish I could get a team of specialists in one room to talk about each of the pieces of my illness. Thank you Tigressa! I think I'll stick around awhile....
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Old 04-03-2014, 11:38 PM #4
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

Having fibro is so unimaginable to those that don't have it. It destroyed my first marriage, and made the teen years very difficult for my now adult children. I feel for you deeply. While it seems that every day it's something else, there are those lovely days that you learn to embrace...those days that there's almost no pain. Breathe in and appreciate those moments. Rest in those, knowing there will always be more.
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Old 04-04-2014, 02:08 PM #5
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

While I rarely, if ever have no pain, I do have tolerable days. I have been trying to focus on the positive and beauty of the world around me. Very well put Onsecondthought.....I will continue to work on that. I'm very sorry you went through the pain of divorce. I would say, it likely didn't destroy the marriage, a true relationship allows both parties to accept and support the other. There is a reason it didn't work. I'm hoping you have found a loving, supportive partner to pick you up when you need it. Just be sure to acknowledge and do the same when you're able....
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Old 04-04-2014, 09:41 PM #6
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

terbaer,
Hello and welcome to the forum. I was so sorry to read of the extent of your illness and the way your son spoke to you. Many on the forum have had to deal with angry relatives or family members that just don't understand that illness robs you of the abilities to do your job or even care for your home and family as you once did. It is heartbreaking when it is a close family member, as it makes you feel as if they let you down and your letting them down. Please know that we all care and you can vent here anytime and we will offer hugs and encouragement.

As you read around the forum, remember to read the older posts as well as the new ones. Each post has answers that provide coping skills in dealing with pain and fatigue, plus giving advice about medications and alternative methods of dealing with stress and ways to relax.

I hope you will come back often and I am happy to hear you have a counseler to help you, as they can be a gift from heaven when life gives us a truly rocky road. Glad you found us.
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Old 04-05-2014, 03:58 AM #7
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

I must applaud you for what you do. It's really difficult to have any kind of activity when you experience fibromyalgia and most people can't work with it. Good luck and we're all praying for you!
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Old 04-05-2014, 05:55 PM #8
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

Oh my gosh you guys, that's just it....I don't feel like I'm doing. It feels like a train wreck and eventually my work situation is going to come crashing down on me. Today is Saturday. I am actually doing some catch-up on my laptop for work. I'm feeling a little bit better so figured I'd jump on some things that have fallen by the wayside. I've been down and out most of the week, by that I mean, severe fatigue, chronic pain, headaches and IBS/Colitis flareup so can't get away from the bathroom. Someone mentioned in a different forum the word "fog". YES! I get that way....Alot! Been that way most of the week! I just hired two new staff (that's a blessing in itself), but I feel like I've left them on their own. I know I haven't because my boss has been great, but what must they think of a boss who's out for almost a week. Am I being too hard on myself? I know that I have some choices I'm going to have to make with regard to work, but it's very scary.

I don't want to give in to this awful debilitating illness. I am starting to accept it, but I'm telling myself it will be on my terms. I will still enjoy life and find other ways of doing what I want. I truly thank you for caring enough to welcome me. I have and will continue to look at other posts and chime in if I have anything to offer. My heart goes out to each and every one of you for living with this, or having family who lives with this...
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Old 04-05-2014, 07:06 PM #9
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

I'm terribly sorry for all you are going through. These types of conditions are the worst because others can't see them. It isn't like a broken leg that is visible and temporary. It is invisible (to doctors, even!) and not necessarily temporary. Worse yet, these conditions will rob life from you.

I had to quit my job. I was so bad that working just wasn't possible, or if I did I ended up using all my energy working and had none left over to heal myself with. I have the support of my husband and parents to do this, and so far we dont have children because I have been unable to. Then I knew I had to make a choice: spend my time in pain at home making nothing of my life, or putting everything I had into healing my body so I could one day have my life back. My parents happened to get to know a man with some of the same issues as me, and he happened to tell them his story about overcoming fibromyalgia with the help of a specific natruopath. So, I hopped on a plane and flew out to that state to see the naturopath. He found a lot of issues with me, put me on a rather heavy regmen, and has me see him for treatments every so often. Sure, it is expensive. But I'm healing! And I won't need his suppliments forver the way I would need pricy prescription drugs forever. This is really hard work, but I am recovering and getting my life back. It may be a year or more before I can work again, but I know someday I will work again, have kids, and enjoy life. Way better than giving up and spending my life in pain on the couch.

Yes, you will have to make a huge choice about work. I'm so sorry you have to consider your ability to work, and I'm so sorry your family doesn't understand. But it is NOT your fault.

I do recommend a couple of things before you quit your job. Try chiropractic care and acupuncture. They help me stay stable and promote healing, and both can boost your energy a lot while reducing pain. It may be enough to help you maintain yourself instead of getting worse so you can keep working. Also, try cutting all sugar and starch from your diet, including fruit and honey and all grains. These clog up our systems and cause more issues than any other food. This may relieve your organs enough where your body can calm down. I have found that any sugar in any form causes almost immediate pain in my muscles! And most important of all: Cardio! Low intensity cardio like indoor biking and light dancing helps to keep your muscles free of toxins and gets blood into them that will help fight pain. Using your body means less pain.

Still, you should have doctor supervision over everything you do. I personally found conventional doctors were a waste of $5,000 and my time. They couldn't find anything wrong with me, despite my complaits. They finally tried sending me to a psychologist. My naturopath is the only doctor to actually believe me, see for himsrlf what is wrong, and treat me.

I wish the best for you!
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Old 04-05-2014, 10:37 PM #10
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

terbaer, so sorry to hear about your son. Don't take what he said too personally, sometimes people say things they don't really feel in the heat of the moment. I'm sure he regrets it and doesn't feel that way. By the way, I also suffer from colitis (and IBS), so I know how hard those flare ups are... in the last few weeks I've been suffering with those, but instead of constipation I've been suffering with the runs... just awful! I know!

Keep your chin up, I can tell you are a strong woman and can keep doing what you have to do. I know having chronic pain isn't easy... and even more when people you really care about don't show the kind of response you'd expect (having same issue with my boyfriend... he seems to indifferent to my suffering and worries lately). but what can we do? We have to go on and make the best out of the hand we are dealt to play with.

Best of luck and keep us posted!
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Old 04-06-2014, 02:14 AM #11
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

I need to wish you good luck and pray for you. You may not be a lucky person but as long as you hard working and motivated to be helpful, there is a good place for you somewhere.
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Old 04-06-2014, 08:55 PM #12
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

I don't have any fabulous tips on how to get thru each day but, I can say that I truly do understand what you're dealing with. I've been where you are now and survived.

I was in my late teens when my first auto-immune disease, ulcerative colitis, hit me hard. This was in 1980 and the only treatment was antibiotics and prednisone. Found out I was allergic to almost all antibiotics and prednisone made me literally crazy. I had just started a new job and was still on probation. Spent a lot, I mean a LOT of time in the bathroom and calling in sick. Even soiled myself once at work; the most humiliating thing ever! I had a supervisor who hated me and thought I was just another sick-leave abuser. She wanted so bad to fire me.

Thankfully, she didn't succeed. She did spend the next several years until she retired making my work life a living hell. Thirty four years later and I'm still employed at the same place. My career suffered; I had dreams of moving up into management and had to accept that I would only ever be among the rank and file. That's not a bad thing; just not what I planned on. Now, I'm currently off work on temporary disability and will be retiring very soon.

My marriage did suffer a bit but, I've been blessed with a husband who loves me and cherishes our marriage and our vows. He's helped me deal with not only my work challenges but also with raising our two daughters and my subsequent auto-immune diseases.

So, I guess my message is this: you will have challenges and hardships and probably more auto-immune conditions but, you will get through it. I believe everything happens for a reason, even though I have yet to figure out what that is, and that God doesn't give us more than we can bear.

Warm, gentle hugs from someone who gets it.
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Old 04-06-2014, 09:20 PM #13
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

Thank you all....You've given me so much to think about! I too am one who believes things happen for a reason...and I still haven't figured out what it is. Since I originally posted this and after reading each of your positive and supportive words, I have said to myself, "I can do this", whatever "this" ends up being in the end, it will all work out. I'm going to continue to have dialog with my boss. I want quality of life with my family so something's gotta give. As much as I hate the things that are happening to me that are so beyond my control, I think I could roll with it if I didn't feel judged. I love my son dearly and will somehow get through to him. I have the support of my husband, my parents, family and many friends. Well, I'm going to believe that until the next time I can't deal with it all again....Hugs to you!
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Old 04-16-2014, 09:49 PM #14
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

Well it's been almost a month and my son still hasn't made an attempt to talk with me. I finally got a counselor appointment with someone whom I love and respect. I've gone to her off and on with and without my husband for almost 20 years. At one point I had brought my son there when he was much younger. I sent a message to my son yesterday and told him I had made the appointment. I told him that I hope he will join me to work through whatever is bothering him. I tried not to make it heavy, but told him he's important to me and that I loved him. We'll see if he contacts me to go.....If not, I'm going anyway. I not only struggle with his behavior toward me, but also, as I've mentioned, how to continue to work and function for my family. Wish me luck!
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Old 04-17-2014, 09:03 AM #15
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Default Re: Trying to work and be an active parent/spouse with fatigue, pain and colitis

It's great to work out while having fibromyalgia. I applaud everybody who does this, since it's really difficult and painful.
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