Got a question for you

Right now I am flaring and feel poorly but on average I have about 3 out of 7 good days. I just can't seem to fully get into remission. I try to stay positive and not have pity parties for myself but lately with this flare or whatever it is it has been hard because I have been stuck at home due to severe diarrhea and pain.

I feel that every day is hard and I need huge amounts of determination even to do the basics. I never get through the things normal adults "have" to do each day - e.g. all the dishes, tidying, etc, and can't imagine adding paid work to the load, even though I'd love to.

Gut-wise I have a lot less pain than I used to, and can even pass hours at a time without noticing any discomfort, but I still have days / weeks at a stretch where I am in pain and am reliant on Immodium and convinced that I am flaring again. I still have to be very careful about what I eat, and don't cope well with changes to my routine, or extra exertion. A normal day for me is 3 - 5 bms, maybe more; a bad day involves more than that, as well as pain, spasming, and looseness.

Fatigue is the hardest thing for me, and it is limiting my social activities and making me feel quite lonely. I am finding that terribly hard. I am also frustrated because there are things that I'd love to do, and can't. And it doesn't help that so many medical professionals keep saying "you should be able to do more; go out and be more active". I keep trying, and crashing again with fatigue and pain.

As Isergodur said, as soon as you add extra diagnoses to your Crohn's, it's just going to get harder and increasingly unrelenting. I wonder if this is what you (like me) are struggling with - not so much the Crohn's, but the terrible burden of all those extra illnesses as well.

Hang in there.

Ivy, who agreed with so much of what you said in your rant thread.

Every time I read an Ivy or Gail post I feel myself saying ditto and wanting to hug them!

Even in remission it is a real challenge to find the energy to get through the basics of a normal day which for me is still full time work plus daily mother/wife duties like the evening meal and daughter duties like trips to check on my dear 85 year old mother.

I am finding it especially hard at the moment as our side of Christchurch is still a real mess and until they decide what is happening with the land we can't rebuild or repair. It is going to take years to fix and I just feel SO tired I can't help but wonder if it will again be a nice place to live in my lifetime. I am usually a 'glass half full' person so really struggling to feel my glass is darn near empty!

I just never have the energy to do anything FUN for ME anymore as I am SO tired. I don't remember the last time I embroidered or was creative, went to the movies or went out for a meal with friends, admittedly the latter is mainly because with the earthquake has destroyed the places we used to go and closed the couple of clubs I was involved with. I just don't have the energy to find new things to do especially as winter is starting to take hold.

To be honest I just want to curl up in corner with a hot drink and a good book and hiberante :)

Not depressed just really, really TIRED but glad not to be in pain so feeling guilty at my own pityfest!

On a brighter note I don't have any computer problems ;P

Lesley in NZ

It's funny, isn't it, how many people (especially doctors) can't differentiate between extreme fatigue and depression.

I saw a documentary on tv last week, about a mother who had three little boys under the age of four, all of them with behavioural problems and an inability to settle at night, and she kept having to fight the medical system, saying "I'm not depressed; I'm TIRED". I sympathised with her, and it made me feel better in a way, because at least we're not the only ones fighting this battle.

One thing I find hard is the choices I (we) have to make, choices that normal people don't. Often I can cook a meal *or* do the dishes, but not both. And, of course, that's a problem when the fatigue has been at that level for a couple of days, and I don't have clean dishes to cook a meal!!!!! I have a social activity this afternoon, but am having bad fatigue this morning, so exercise, dishes etc, are probably going to have to be sacrified just so I can spend some time with people, which I desperately want to do.

I'm particularly bummed today because church is having a big party for the royal wedding tonight and I'm longing to go, but it's too late and the physical cost is going to be too high, especially as I have a huge fortnight coming up, medically. Normal people don't have to struggle with those choices and I am finding, the older I get (and I'm only in my early 30s), the more I have to fight envy & resentment at those who are having an easier time of it. How come they get to be 60, 70, 80, 90, and still having more of a social life than I've ever had?!! It feels very unfair.

I do find it curious, too, that we are all fighting this battle, and all admiring & probably envying bits of each others' lifestyle. I was very envious of you over the Easter weekend, Nanners, for having your grandson visiting, and for being able to go to a swap meet. I think none of us really grasps just how admirable we are for doing as much as we can, and I think each of us are probably doing things that others envy... the problem is that each of those activities comes at a cost, and requires the sacrifice of other things that we'd love to do.

The emotional cost is hard, too. You're not alone, Nanners, in wanting to be a better friend & relative to the people who care about you. I'm doing a terrible, rotten, job at that this year, and feel really guilty about it.

Ivy.

Thank you guys so much!! You do not know what reading your responses has done for me. I thought I was just being a sissy. But it seems your days are much like my own.

Fatigue is a big issue with me too. Do better in the mornings but as the day goes on it just gets worse and worse. I am achy quite often. I cannot function without my pain meds. My Fibro is actually fairly mild most of the time. It hits me hard though when the weather changes. I feel like some beat me with a bat. But my arthritis is there alot more often. I am lucky I think that I have a desk job as sit alot and that gives me a little break. I have alot of pain in my right side rib cage that gives me grief frequently. Part of it I think is from adhesions and part from Fibro. My right rib cage is literally tender to the touch. My arthritis is in my neck and upper back, hands, hips, knees and feet. When I first wake up in the a.m. I drop stuff alot, run into things alot because I am so stiff and uncoordinated. I am frequently bruised because of my lack of coordination.

Ivy your tlc lists seem so daunting to me. I see what others have ahead of them, and sometimes I think my job is easier. Thank God for the husband I have. I do not clean, cook (sometimes I will), or do anything in my house. My husband takes care of all that. Yes I know I am quite spoiled:)

Thanks again for sharing your days with me. It helps me to not feel so bad or so alone. I see that most have the same daily struggles I do, and many are in remission too. My CD doesn't give me too much problem, its all the added side issues that get to me. Hugs!

Generally everyday around this time 2-3am wether I'm at work or at home I feel hopeful. I start planning my morning off...I tell my bf we'll go running and then to a relaxing/ power yoga before bed. Or I'll research online classes I want to take. Or I'll make plans w/ friends or my bf for my days off.... All this sounds great and then I end up going straight home to bed cuz I'm practically in tears from back pain the drive home and 12hrs in the lab has caused. And I can't go work out once I've taken a pain pill *sigh*... Then comes my first evening off and my stomach is cramping so bad I cancel the movie plans or dancing plans I have....or worse I don't cancel, I just sleep through all 5 alarms I set for myself and wake up with a million missed calls and txts saying "WHERE are YOU???"... My bf likes to call all these fanciful plans of mine akin to lying I tell him it's wishful thinking ;)...

But as far as the basics go my CD is pretty predictable and I can tolerate it... I go to the bathroom once on a good day and 3-5x on a bad day. I know what I can and can't eat and it changes quite often. I did just have an anoscopy so I can't sit down properly and I hurt from laying down so much. And I'm waiting until the surgeon decides I'm well enough for my first CD resection surgery which I'm totally freaking out about the cost and time off for. The back pain and fatigue get to me the most these days though these random skin infections are seriously working my nerves.. Now what I don't have a handle on are these newfangled migraines for which nothing seems to be working and I find them completely intolerable since I can't forsee them at all...

BTW it's really nice to know I'm not the only one envious of others....I'm always wishing I could do more..see my friends more often...keep a plan for once...or at least not pass out during one of my awesome plans ;)

*Had to edit due to wishful thinking.... My CD cramping pain has recently, since my cscope become unpredictable. Once it starts I honestly have no idea if I'm going to have to go running to the ER. Years prior I could tell if the hydrocodone wasn't working but now once the pain starts I never know how bad it's going to get. I've racked up quite a few visits to the ER since Nov. :-/

I am feeling so much better since I started posting here last summer. I hardly have any bowel pain - my bad day last Saturday was the first in a long, long time. My knee still hurts and my random hand pain reappeared briefly last month after having been gone since late 2009.

I did just "recover" from an extended series of palpitations and PVCs that lasted about a month. It was weird and annoying and completely came out of the blue. My GP mentioned stress as a cause, since I don't drink alcohol and only take a little caffeine every day, not to mention I've never used a stimulant drug, legal or otherwise, EVER. I laughed at that. Stress! Since we finished rebuilding our house after a fire 2 years ago I can say that I am not stressed. So I don't think palpitations have anything to do with CD, but it sure has been entertaining. Maybe all the stress from the PVCs gave me my bad CD day last Saturday!

I am getting exercise now and by the end of the week I am exhausted. I don't know whether that's due to full time job, not enough sleep, parenting young children or CD. Or all of it.

Thanks for asking Nanners, and I hope you're having a better day today.

I am in "OK" shape. But I am tired and I am depressed nearly every day.

Today is one of my crash days, those annoying days where fight to keep eyes open and eventually have to give in.

I have this week as holiday, I took 2 days holiday and got 11 days off cause of the double bank holidays, my husband hasn't been on holiday so thought I could get garden sorted ready for summer. So Sunday we went to see a relative 2 1/2 hours drive each way and did some odd jobs there as she is elderly. Monday spent most of day at large local garden centre getting summer bedding plants with a friend. Have to take a friend as end of buying wrong stuff otherwise, such as a previous visit where I bought gladdoli for my hanging baskets as got names confused, sad I know. Tuesday and Wednesday spent all day in garden, emptying pots and troughs and putting in new compost and plants. Thursday took 8 large bags of garden waste to the recycling centre. Friday, royal wedding and 3 sick dogs so kept eye on them all day and until husband came home from work at 2.30am and changed water in my two aquariums (one is 250l and other is 430l) which takes about 2 hours.

So today husband's only day off work this week and we were going to take dogs up on the hills for a run, I got up before 9, he still in bed as works nights and by lunchtime I crashed, couldn't keep eyes open so had to go back to bed. That's when this thing annoys me, beautiful day and I slept a lot of it away. My own fault really, I know I'm not back to normal yet but I am hopeless at pacing myself and have to get it all done immediately. Suppose it's a good job I talked myself out of stripping the spare bedroom wallpaper to redocorate that. Think I'd better have a lazy day or two before I go back to work.

Nanners said...
My question is how do YOU feel everyday?

I often have roller-coaster days: I feel pretty good in the morning and early afternoon, but then my energy plummets and I need a nap in the evening, but then I slowly rally at night. But some days I feel good all day, and other days I feel fatigued all day and need several naps.

Nanners
I have so much to say but it's really late and as usual I can't seem to find myself going to bed just yet
I stay up late every night and sleep past noon.. I've always been a night owl but lately it's gotten way worse.
As you know I have been going thru some terrible stuff recently.. I should be making up my mind about what procedure I want for this aneurysm.. and then I will have to wait for my Crohn's surgery which I need so badly

a usual day (before all this other stuff happened) is that I suffer from intense pain from Crohn's arthritis (especially now that my sed rate and crp are going up) and a lot of fatigue... sometimes it's impossible to tell whether it's from the Fibro, but like you that affects me more when the weather changes
I want you to know that I take flexerol every night (5-10mgs) near bedtime and for the first time in my life I haven't been waking up with that feeling that a truck ran over me while I was sleeping.. I'm not sure if you have tried that yet for your fibro.. I also noticed that the Gabapentin I just started taking for my migraines has also helped overall body pain.. I don't have any other painkillers.. I've asked so many times but none of my docs will write me a script... but that will all change after my upcoming operations.. they've all said that they were sending me home with narcotics..

I don't make plans anymore.. just doctor appts.. It's really all the strength I have.. I try to walk home from them to get in SOME exercise but I am so exhausted after I always need a day or two to rest up.. my boyfriend always goes with me.. so now we try to have a cappuccino or something on the way home that makes it into a pleasant experience
I find myself buying more clothes for lounging in the house than going out..
I rarely leave my house more than twice a week.. and even then just for a few hours... sometimes I will be out for only 4 hours or so and get back home and I say to myself: 'Ican't believe that normal people would still have another 4 hours to work and then have to travel home.. I don't know how they do it and then cook dinner or wash clothes.. i don't know how anyone can do all this stuff and still have the desire and energy to go out to the movies or dinner"
and then I remember that there were times in my life that I was able to do things non-stop and work hard.

I've lost touch with many of my friends and rarely socialize anymore.
I also paint and play music both professionally and I haven't had any desire to do either in a long time.. which leads me to have more depression

I know from your other post that you are deciding about making a very important life change
All I can tell you is that going on SSD was the best thing that has every happened to me as far as being able to have steady income as meager as it is.
the stress I used to have from trying to make it to work when I felt terrible used to eat away at me... and trying to take days off was so hard.. I always reached the limit for time off at all the companies I worked for.. Fortunately it never affected me getting future work back then..
As you know my CD DX was very recent.. but I can look back and see how it has affected me long before I knew what was going on in my body.
All my jobs required great stamina and strength or traveling all the time.. I really don't know how I managed as long as I did.

I know that many people on here have Crohn's far worse than I do.. staying on this low residue diet has made it possible for me to get through most days without abdominal pain and also I don't suffer with diarrhea which is a huge thing. But I have tons of the other symptoms and those don't get as much attention from my medical team.

I sincerely hope that you get through this time and make the decisions that will make you feel less stress and give you the time we all deserve to pursue some happiness in our lives.. We all deserve this.
NY Veggie

Nanners, have you seen the fibromyalgia rating scale? It's a good way of rating fatigue and quality of life, and I post it here sometimes. It might be a good thing to use and share with your doctors, to give them some indication of how you are feeling

I'll try to find it again, and will repost it, either here or in a separate thread.

Ivy.