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12-24-2014, 06:56 PM   #301
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Was fine in terms of energy until I started the azathioprine. Since then I've been very fatigued most all of the time.
12-24-2014, 07:35 PM   #302
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Fewdalord how long have you been on it? You may adjust or maybe can ask Dr to tweak thy dose.
12-28-2014, 07:38 PM   #303
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i was on Aza 150mg for 6 weeks and it was terrible. I was so tired, I couldn't make it through the day without a nap. It probably didn't help that my Hemoglobin was 6.8 when i started (and still hasn't improved).

Doc decided to pause the aza for a week (i'm also on Humira) to see if my hemoglobin would increase. I have been off the aza for 6 days now and have had the best 6 days I can remember! Looking forward to seeing what tomorrow's blood draw reveals...but I can FEEL the difference already. I really hope I can stay off the aza without any significant negative effect on the Humira.
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12-28-2014, 08:04 PM   #304
Ann Morgan
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Josepilove: I had a blood transfusion in 2009 because my hemoglobin was very low. ( I think it was 5.6 ). My Primary Care Physician sent me right to the hospital. I was only in the hospital over night and I was given two units of blood. After that I started taking 2 iron pills a day for 5 years ( ferrous sulfate, over -the-counter from the drug store ). I took the iron pills until April of this year, when my new PCP said that I did not need to take the iron pills any longer....so I guess he feels that my hemoglobin is fine now. I hope he is right and that I don't have to get another blood transfusion. I get blood draws on a regular basis from ALL of my doctors.
01-26-2015, 05:18 PM   #305
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Yes, to the extreme. And none of my practitioners get it. I had to listen to the rant about other disabled people pulling it together, blind and crippled, so you can too. I called her an ignorant B%tch. I get very short-tempered with it, and every night I wish I would just never wake up again. I am so done with this struggle and the lack of care.
I kinda feel the same, but rarely express it... explaining it is pointless. And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.
01-26-2015, 05:28 PM   #306
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Interesting Duwardian. How did you get the gene mutations diagnosed? I hope this pans out for you!

Questions to everyone: Who is still working and if you are how many hours a week?

I am not working, but at times feel like a whimp. I feel like I just need to buck up. I need to find a new line of work, but don't have and motivation/energy to think of what that would be or what I could do. Thanks for listening.

Wishing everyone a wonderful Christmas season.

I went through the same thing. I had to change jobs a few times. Ultimately, I had no choice but to figure out a job I could do at home. That has kept me going for the last 8 years, BUT... now the fatigue is so intense, it causes severe reclusiveness. So I have to keep tweaking my job to minimize interaction with people. That really paints me in a corner... but the alternative of not working would cause far too much depression.

But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day. This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world. But its all I can handle at the moment.
01-26-2015, 07:25 PM   #307
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Hamster: You mentioned that your constipation and fatigue happened at the same time ? I had diarrhea for 17 years and then all of a sudden in May of this year I started to get severe constipation ! As soon as the constipation started, the "exhaustion" started. I have been "tired" for years, but it was manageable and I could lead a "normal" life. But in May I started with the "exhaustion". I even wrote it in my Day-Planner. In May I just wrote "exhausted" on every single day of my Day-Planner Calendar. I am back to diarrhea now ( could be from the fact that I took antibiotics in November ). But now I am at the "fatigue" level. In 2014 I had a lot of stress and worries and I just got so tired mentally, physically and emotionally.

I have so many things wrong with my physically and then I have Major Depressive Disorder. Some things that probably make me tired are: menopause, hypothyroidism ( I just started on medication this year ), B12 deficiency, iron deficiency, depression, Ulcerative Colitis, arthritis and medications.
Thanks for sharing that. I did have an a lotta stress right before the switch as well... and I almost was 'expecting' the cronh's to go in overdrive (which it did). However... I have since done everything I can to minimize stress... but I'm still stuck at this bad place. But other than that, not much else has changed as far as diet or drugs. It just kinda happened.
01-27-2015, 09:12 AM   #308
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Hamster said:
"But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day. This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world. But its all I can handle at the moment."

So what is your profession Hamster and what ideas do you have for types of jobs that are easier when fatigued? I have been in the healthcare field for a long time as Physical Therapist Assistant. I don't have many ideas and not very motivated to look. Thanks for sharing
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02-04-2015, 10:31 PM   #309
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I'm glad to find this thread even though I found it late! Thanks to everyone who has shared your story. It's helpful to know that I'm not alone and to have so many data points about fatigue in Crohn's in spite of numbers that seem in the normal range. We can't measure everything, and there's something about this disease that leads to fatigue. It is NOT our fault and we are NOT lazy.

I started having digestive problems in 2001 after chicken pox at 23. Nobody could figure it out, I cut out gluten and was mostly okay. Through the years since then, I've dealt with increasing fatigue with no explanation. The digestive problems got slowly worse, too, until I had cut out more and more foods and then had lots of pain and some bleeding two years ago. I was surprised to be diagnosed with Crohn's Disease after a colonoscopy. Even though my bathroom symptoms are comparatively mild, the fatigue is NOT mild. It is my most difficult symptom to manage. In order to help myself feel a little more in control, I created a rating system (green, yellow, red) and I rate each day, then act accordingly (exhausted, crying, and irrational = red day = TV or reading . . . fatigued but reasonable = yellow day = quiet work, limiting exertion as much as possible) . . . spunky and happy without discomfort = green day = do whatever I want!) I keep reminding myself that my husband benefits from me resting wisely (I am more fun, I am able to speak clearly and think better, I am nicer to be around). I FIGHT every day the idea that I am lazy.

Over the past few years, I have slowly backed out of a normal job (first to part time, then quitting altogether) and I work for myself now, but our family is supported by my husband (I don't really make money with my business yet, but I'll get there!) I have a great husband. I also have a couple friends who deal with the fatigue of auto-immune diseases, but it's best not to talk about it with my family. They don't want to know. In fact, just yesterday, when I mentioned that my overwhelmed and stressed-out Mom (who has just been diagnosed with cancer) might want to think through her activities and rate them based on importance (i.e. save energy for the most important things and choose to let the less important things go), my Dad stabbed me in the heart. He decided to tell me all about his aunt, who was "sick all the time," but bravely kept forging ahead because she was a farmer's wife and she didn't get to rest just because she was tired. That marked the end of sharing my health journey with my family.

I get that it's hard to understand this illness without experiencing it, but what are the chances that a focused and driven woman who was very successful in life early on and who got lots of joy from learning, traveling, and experiencing life (including two graduate degrees even while I was getting sicker) all of a sudden decide to be lazy and rest all the time rather than doing fun things? Answer: she wouldn't unless she couldn't do otherwise.

Best wishes for health and energy to you all!
02-06-2015, 01:58 PM   #310
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Thank you so much Christie for putting that into words! Your story makes me feel understood. hugs!
02-12-2015, 06:17 PM   #311
Ann Morgan
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Christie thank you for sharing.

I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?
02-12-2015, 07:25 PM   #312
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Because everyone is different...and this inflamation is internal and can really do a number on us!!!
02-12-2015, 08:01 PM   #313
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Christie thank you for sharing.

I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?
I hear you! I feel like that all the time. Comparing myself to others. I finally realized I can push and do more than I should and then am no good for days. I have decided I can't create energy that isn't there. I will literally stop functioning mentally and physically.

Has anyone ever seen the spoon theory? It is a wonderful visual for explaining limited energy/fatigue.

http://www.butyoudontlooksick.com/ar...-spoon-theory/
02-13-2015, 08:38 AM   #314
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I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?
If you could lead a normal life, Ann, you would be doing it! If it were just a matter of will power, or effort, or desire, we'd all be living happy, productive lives. There are clearly far more complex things going on. Don't blame yourself for the things you can't manage. Your sister doesn't have to cope with the same things you do, and it's not just physical symptoms that differ. She may have different people supporting her, different experiences to draw on, different emotional responses and ways of thinking. These are not things we can just control how we like. We can usually make some changes, but working out how to do so is very difficult.

You're allowed to whine, as long as the whining doesn't include you blaming yourself.
02-13-2015, 09:21 AM   #315
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02-14-2015, 10:59 PM   #316
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I completely relate to this talk about comparing myself to others! I struggle against it every single day. Grr! I think about the spoon theory frequently - my husband and I use it as a "secret" code: "How many spoons would that take?"

It's especially hard to keep the right mindset (that I'm not lazy and bad) when my parents are in town (they spend the winter in Arizona, where we live). I feel negatively judged for *being* sick in the first place (I must be doing something wrong if I have a chronic disease) and then judged for not getting better and judged for not being more productive (my house is not maintained or cleaned to the standard my parents think is ideal - though I think my Mom probably has some OCD in this area). I've been what I would consider successful in my life and I still am slowly accomplishing the mission I believe I was placed on Earth to do, and it's extremely hurtful that they focus on what I am not doing rather than what I *AM* doing.

I was busy being sad and discouraged the other day on this topic when I had a little vision. I envisioned myself being an expensive and valuable low-miles-per-gallon-of-gas luxury car. God was telling me that I'm not a lemon or a junker; I am created for a different purpose and my life (at least right now) has a slow pace, but it doesn't mean I'm faulty. A Rolls Royce only gets a few miles per gallon - so do I! A smart person wouldn't waste gas in the Rolls Royce running all over town - and I don't want to waste my fuel, either! My husband took the metaphor farther and said that we don't expect a pick-up truck and a Mini to serve the same purpose, but somehow we wrongly expect people to all have the same capabilities. He prefers it if I save my fuel for the most important things: God and him! And then a friend (who also deals with fatigue) said maybe we're the expensive restored vehicles that are mostly owned for joy and love rather than hauling dirt or groceries and maybe most of our purpose is to be beautiful and inspiring - ha!
02-14-2015, 11:59 PM   #317
Ann Morgan
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Christie:
I loved your post. I live in Glendale, Arizona. My sister and brother-in-law retired last year and purchased my dead mothers condo in Sun City. They will be here in January, February and March of every year. They have only been here one month and I already have a lot of stress. I have mental health issues in addition to my Ulcerative Colitis, and arthritis in my hips, shoulders and neck. I have tried to explain to my sister that I cannot physically do all of the traveling and going to events and festivals she invites me to. I keep telling her that I have a lot to consider before I go anywhere. Like: bathrooms, how long is the drive, is walking involved, is standing involved, will I be exposed to direct sunlight, what will the temperature be. They just bought a new fancy car, I am afraid to ride in it because I would not want to have diarrhea in her car. My mental stress has escalated since she arrived.

I live my life very simply. In my life going to the grocery store takes effort because of my depression. Going above and beyond my regular life things messes me up. I want her to go home NOW, but she will be here 6 more weeks. I love her, but I still want her to go home. I am tired all of the time, I can't take on any extra activities.

Well, that is my rant for today. Hopefully I can see a doctor on Monday or Tuesday because I need a game plan to jump start my "recovery" ( mental illness). Thanks for listening.
02-16-2015, 08:49 AM   #318
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Christie, that post was lovely! Thanks, I shall apply it to me too. Life is unbearably hard at times. The fatigue, along with all the other health issues are a nightmare.

Ann, I know exactly how you feel. I can't be dealing with visitors for long either. The hardest part is telling her how you feel, just so she goes and you can feel less stressed. It won't do you any good to be made more stressful.

I know exactly how you feel about going out, or in the car. I'm exactly the same.

You all have my deepest understanding and sympathy.
02-16-2015, 01:21 PM   #319
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Just a quick note about car rides. I have taken to wearing adult diapers - Depends are a little thinner and pretty discreet. At first it was hard to do (emotionally) but now I have come to really appreciate them. I have not pooped in them but just knowing I have it on seems to take the stress off of me. I know if I do have an issue I have some protection on. When I get close to where I am going if we stop somewhere I will take it off and toss it away in ladies room. I highly recommend them. The hard part is trying them for the first time. It was a little hard for me to wrap my head around but now its really fine. Nobody can even see them.
02-16-2015, 01:22 PM   #320
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I rarely complain about the fatigue but it really hit me how noticeable it is when my mom stated she was tired and I agreed. My brother then chimed in with "you're always tired". Ugh.
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02-17-2015, 06:49 AM   #321
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Just a quick note about car rides. I have taken to wearing adult diapers - Depends are a little thinner and pretty discreet. At first it was hard to do (emotionally) but now I have come to really appreciate them. I have not pooped in them but just knowing I have it on seems to take the stress off of me. I know if I do have an issue I have some protection on. When I get close to where I am going if we stop somewhere I will take it off and toss it away in ladies room. I highly recommend them. The hard part is trying them for the first time. It was a little hard for me to wrap my head around but now its really fine. Nobody can even see them.
I second this. I have an ileostomy now, which I love, as it means I don't have this problem anymore, but when I did I used Molimeds (the brand the NHS uses - like most things, they're free on the NHS for people in the UK). I still use them for my bladder. They give you piece of mind and spare your clothes. Draw sheets work as protection for car seats, etc. too.

I still carry a change of clothes and everything I'd need to change my stoma bag while out in public in case my bag leaks, but that hasn't happened yet (though I don't go out in public nearly as much as I used to now as my other medical condition worsens). If I'm just out walking my dog and won't be out very long and nowhere very formal, I don't take anything with me now I've got the stoma.

To anyone who has continence problems, most important is often the stress and worry of what might happen. Although I know my bag could leak, I don't feel the same way about it as I did with incontinence, but some of that is a change in my thinking rather than just the physical change in the nature of the accident. Take clean clothes, wipes, etc. with you, try wearing an incontinence pad, and then try and put the fears to the back of your mind. If something does go wrong, deal with it when it happens, it won't be the end of the world. If you feel it may help, explaining the problem to whoever you'll be with from the start (if you're with friends or family) can make it much easier. If you're worrying about an accident, you at least won't be worrying about how you'll explain it to them or dealing with their surprise. They may also provide moral support, and practical help if you need someone to run and get you loo paper, clean underwear, or whatever.

And to bring this post back on topic to fatigue, worrying is exhausting! So I'd count incontinence pads as something that helps make going out not quite so overwhelmingly tiring.
03-11-2015, 04:10 PM   #322
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Hamster said:
"But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day. This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world. But its all I can handle at the moment."

So what is your profession Hamster and what ideas do you have for types of jobs that are easier when fatigued? I have been in the healthcare field for a long time as Physical Therapist Assistant. I don't have many ideas and not very motivated to look. Thanks for sharing
Sorry, it takes me forever to respond. Programming and Web design/maintenance. But that's certainly not for everyone, it's a bit on the nerdy end for most; but I like it.

But I can't really get myself to do any marketing/sales/support for my services, so I have to 'buddy up' with a 'talker' to handle customer interaction. I've also had to drop pretty much every client that causes any amount of stress. My body just can't handle it.

I can't really think of a lot of other jobs like this. Energy and interaction seem to be a prerequisite for almost everything; and I am sure that includes healthcare.
03-11-2015, 06:00 PM   #323
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If anyone suggests that its lazyness or that its a 'choice', why on earth would anyone choose to lay-down, all day, do nothing, go nowhere?

There is no upside at to this at all. And its not a consequence of anything we are doing or eating, that we can 'turn off'. Nobody in their right mind would purposefully be choosing this type of lifestyle, and we've all been to hell and back trying to combat it.
03-16-2015, 12:36 AM   #324
Ann Morgan
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Yesterday I went out for coffee with my sister. The coffee shop was nice and we chatted for a long while. Then we visited some antique-type stores. The stores were all connected in a small strip mall. I had a good time at the coffee shop and the stores.

Before I even went on this coffee/shopping trip I had told my sister that I did not want to be gone for more than 5 hours because I get tired.

I arrived home at an appropriate time. I ate something and watched TV. One hour after I got home I became extremely tired. I could not keep my eyes open. I ended up turning off my TV and all the lights and shut my drapes. I slept for 4 hours in the middle of the afternoon ! I mean, I really slept like I do at night time. Except at night time I take a medication that makes me sleepy, that is a side effect of that one medication.

I am glad that my sister respected my limitations and I arrived home before my 5 hour limit. A while back I went to some Thrift Stores with my sister and Auntie and after 2 hours I was exhausted ( those stores were all attached in a little strip mall ).

I want to do other things, but I am pretty limited on the length of time I am gone because of the exhaustion I wxperience. With my sister or Auntie I can go to coffee shops, breakfast, lunch, dinner, to some Thrift Stores or Antique Stores. I did go to Costco with my sister one day to buy some things, but I had a short and detailed list of what I wanted to buy. I got the things on my list and then got out of there ! My sister likes to roam around the store and eat food samples. I just get what I want and then go home. : - )

Thanks for listening.
I am going somewhere 4 days a week now on a regular basis. I have to get up at 6:30am ( ugh). Then I get home by 3pm. I will see how the 4 day a week thing goes. If I get too tired I will cut down to 3 days a week.

: - )
03-17-2015, 09:12 AM   #325
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@Ann. I feel you! I don't like to even plan 2 days in a row doing things (and that is 2-4 hours at a time). It will definitely catch up with me. My mom is very supportive, but I think she finally realized how severe the fatigue can get when I visited her. She saw first hand when I just shut down. She says she sometimes gets that way too, so she knows the feeling.
It is a daily struggle and I need to watch how I plan things.
03-17-2015, 09:29 AM   #326
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@Ann. I feel you! I don't like to even plan 2 days in a row doing things (and that is 2-4 hours at a time). It will definitely catch up with me. My mom is very supportive, but I think she finally realized how severe the fatigue can get when I visited her. She saw first hand when I just shut down. She says she sometimes gets that way too, so she knows the feeling.
It is a daily struggle and I need to watch how I plan things.
This is pretty much how I feel too. Though I can do more when it's things where I can plan my own schedule. So I walk my dog every day, and have family come to visit, etc. But I walk my dog at the time I have most energy. I'm a morning person, so I get up early, wait for my meds to kick in, then go out, maybe for fifteen minutes, maybe longer, but if I get tired (or any other symptom gets too much) I come home and rest. And it's ok having family round, because I still nap during the day when I need to, eat when I feel most able, etc.

But when I have to do things at a set time, it's exhausting and I get nervous whenever I have things scheduled coming up - hospital appointments, usually. Then they might coincide with the time I desperately need sleep, and it's awful.

It's been a few years since I last had what came close to a normal life - university, forcing myself to have a social life - and there's no way I could do half that now. But even back then, the evenings were the worst, I'd literally be crying with exhaustion because I just wanted to go to bed but made myself go for nights out instead.
03-17-2015, 12:08 PM   #327
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I feel guilty sleeping through the day, but at least you people understand as so many others don't and make me feel guiltier than I do. It is a sorry state of affairs, and I think I'm a bit of a wasted life and that's my biggest regret. I would so love to go on holiday somewhere, but you all know how difficult that is. Utterly exhausting.
03-17-2015, 02:44 PM   #328
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My family don't make me feel guilty - or even try to - because they know how miserable and irritable I am when I need sleep, so they know it's in their best interests to let me nap, I'm much easier to live with that way!
04-01-2015, 02:49 AM   #329
Ann Morgan
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I kinda feel the same, but rarely express it... explaining it is pointless. And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.
I am 54 years old and disabled. My sister is 64 years old and just retired. My sister has many things wrong with her health. We are both tired all of the time, so she somewhat understands me when I say I am "tired" ( which really means exhausted/fatigued ).

My sister can do : yard work, gardening, painting the inside of the house, home projects on the inside and the outside of her home, heavy duty cleaning, travel, site-see, walk, stand, SLEEP. She says that she is tired but if she is tired how can she do all of those things ! She just retired less than a year ago and she has been busy ever since.

The past few days I have been unusually "tired" and it really has me stumped. I am trying to figure it out. A lot of things can make a person "tired". I can be "tired" from my : Ulcerative Colitis, Hypothyroidism, Menopause, Major Depression.

I have been trying to participate in a program for people with mental health issues during the past month, which means being away from my apartment three to four days a week for several hours. I need to be away from my apartment to combat my isolation, but I also get very fatigued when I am away too long. I am trying to find a balance between resting at home and going to the program, in addition to doctors appointments and errands. I go to this facility to help me learn coping skills for my Major Depression and my Anxiety and I go there to socialize. The facilitators are great there and the clients are interesting and I learn a lot from sharing experiences with them.

I don't know why it is almost 1am and I am still awake. Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.
04-01-2015, 09:45 AM   #330
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........ I think I'm a bit of a wasted life and that's my biggest regret. I would so love to go on holiday somewhere, but you all know how difficult that is. Utterly exhausting.
I'm felt the need to chime in as misery does love company. I've just reached this point in my life where after repeated episodes of extreme dehydration (getting the flu and losing 10lbs over night through my ileostomy), I've caused enough damage to my kidneys I now can add a new "disease" to my list of problems... "Kidney Disease". Due to my kidneys not functioning properly, I now experience added fatigue which when added to that related to my Crohn's Disease and depression, it has pushed me over the edge and not being able to work anymore. What's sad is that before my kidneys started to have major issues, I had enough energy to get my work day finished and that was about it. Now I have those 10 hours back in my day, but I am just as tired, if not more, but virtually all day now.

Lazying around the house all day definitely makes me feel completely useless and guilty as I see my partner come home tired from her work 5 days a week. At least she enjoys her work (RPN), but it still tires her out. That puts the pressure on me to get stuff done around the house, which I do honestly try to take care of, but there are days where I feel like I am running on 10% of a tank of gas, so even getting up and walking around is tiring.

I am just in the battle, i mean process of trying to get qualified for long-term disability, but to go back to the original statement I quoted, at least I worked until I was 43 years old, but without that in my life, if feel my future is nothing short of pathetic. It's hard to find purpose in your life, when you do nothing with it. When you lack energy, you lack the desire to participate in anything. I hate planning any future events as I fear the day the event arrives, I will just be too tired to participate and ruin it for my partner. I rather she plan outings with her mother, as then I know she will have fun.

I don't want to come across as suicidal here, it just that with being tired (not always sleepy but always resting), life can be pretty boring. There are only so many good movies/tv shows to watch and I feel I have almost watched all of them. I don't know how those of you who might be years ahead of me (ie. been on disability / not working for years ) can maintain your relationships with your respective partners. I figure, in time, she will eventually grow tired of "the guy that is making the big dent in the couch" and she'll find someone exciting to take her places and do things I can never do. Despite her not being a big thrill seeker/social butterfly, she isn't as much of a hermit as I.

I guess all we can do is deal with things one task at a time. My focus is on getting my disability approved now, so maybe with that out of the way and the stress associated with it, my "energy" can be next put in to finding purpose to my new way of life.
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