I am SO tired!

Lesley · Post by **Lesley** » Thu Nov 17, 2011 10:07 pm

The depths of fatigue are overwhelming! And the muscle and joint pains are nearly making me cry. I don't cry easily

except when I have this little guy to do it for me.

Bloated and hurting, but no BM. C coming in to play again.

I guess I am not in remission.

draperygoddess · Post by **draperygoddess** » Thu Nov 17, 2011 10:14 pm

Don't be too hard on yourself! It's still early in the process, and it takes time to figure out what's safe for you and what's not. I've been at it for over two months, and I still have off days and don't know what I ate to set it off. Give it some time and a good night's rest!

Lesley · Post by **Lesley** » Thu Nov 17, 2011 10:59 pm

I get too tired to go to bed. To go through the motions, face and teeth cleaning, changing etc. I just sit and stare at the TV.

I am nowhere near even started yet, let alone where you are. Times like this I feel defeated.

nancyl · Post by **nancyl** » Fri Nov 18, 2011 6:47 am

Leslie,
I am so sorry that you are not feeling well. Hopefully that will turn around soon.

Hugs,
Nancy

Robin · Post by **Robin** » Fri Nov 18, 2011 7:15 am

Hi Lesley,

Sorry to hear that your not doing so well(most of us hear can relate). I can say from expierence that the fatigue was the last thing to go for me to go. I am no where near remission so the fatigue does come back from time to time. Once you get your food intake down to a science it will help you tremendously!

Robin

Lesley · Post by **Lesley** » Fri Nov 18, 2011 12:56 pm

Thanks guys. Looking forward to that day! I got up today nearly as tired as when I went to be last night.

I have to get going. Otherwise I will be sitting here staring again tonight (I will be doing that anyway, but I have to do something in between!)

Gabes-Apg · Post by **Gabes-Apg** » Fri Nov 18, 2011 2:29 pm

Lesley
sorry to hear that you poorly and stuck on the roundabout of symptoms.

I am a strong believer in 'listen to your body' if you are fatigued and have joint pain try and rest.
based on what you have shared the past couple of weeks, I think your digestion is super inflammed, this is putting pressure on all the other organs, and your body (muscles, joints, ligaments, skin etc) are not getting all the nutrients they need

My view of things like MC (and this applies moreso when there are other conditions symptoms occurring)
we all have a limited bank of Physical, mental and emotional energy. On the physical side, if we keep 'marching on' when there are niggly symptoms, if we dont give the body time to recover the symptoms get worse, and makes us slow down.
at this stage our mental and emotional also have issues.

you have done well with the gerd, keep chipping away at coming up with the solutions that will reduce your symptoms.
as you read this take 4 really deep breathes and let them out slowly. then shake your hands vigorously and shake out the unsettlement and frustration you are feeling.

be nice to your body, nuture it, protect it, listen to it, it is all we have, and as tex can attest removing parts of the digestion system does not solve the issue.
We have to come up with the management plan that allows us to live life..... stay calm and wake up each day and embrace it that it is going to be better than the day before.

most of us have had to make pretty major adjustments in our lives to achieve MC Management, not just with meals and what foods we eat (which is a huge thing), but with our daily routines, what types of excercise sport we do, interaction with others, socialising, what clothes we wear, how we get through the work day.
while you are trying to figure out the Management plan that will work for you for all your health considerations, be concious that things may not be the same as what they were pre MC.

As i said in my 'is it worth it' post.

as I pondered 'life with MC' over my morning coffee, IMO, achieving norman doesnt have to be the main goal or the measurement of success. and as per a recent discussion there are different opinions about what is normal.

I think the measurement of success is;
being well enough to live life,
being confident enough leave the house wearing white
not having to carry a spare set of clothes in the car,
that Mc Management is melded into your life and not awkward or obvious

Set realistic goals for yourself, each of us are different in your case having minimal GERD, consistent BM's not D not C but somewhere inbetween without too much extremeties of D & C.
if you would like me to send you some of childrens parafin let me know, lets try to get rid of one of your symptoms each week

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harma · Post by **harma** » Fri Nov 18, 2011 3:00 pm

I am sorry Lesley your still very so bad. I don't for how long you are on the diet, but for some of us it takes a bit longer to get our life back on track and actually see/feel a huge improvement. Actually when I look back on my remission path, the first improvement came immediately after starting entocort, I respond very well on that. But that was only the D. For all the other symptoms, bloating discomfort in my belly, fatigue, it took much longer. Like one to two years. We are not all like that, some see improvement much sooner, for others it takes longer. And also, it will cost you time to figure out what you can eat and what not, you can do testing, but besides that it is also trial and error.

I agree with Gabes, don't fight with your body, but listen to it. It will not solve your health issues, but will make it easier to deal with.

Hope things will settle down soon. I do understand your desperation. You so much want your life back. I think after many years we all have that moments.

Lesley · Post by **Lesley** » Fri Nov 18, 2011 3:06 pm

Gabes! You are a sweetheart! You too Harma! Nancy and Robin also!
I am so thankful for you and all the wonderful people on this site! I don't know what I would have done without you.

As an OT I actually dealt with mourning therapy. Losing a part of yourself, or some ability needs to be mourned exactly as a death should be mourned, even though the person is right in front of you.
But all my life I was conditioned to push on. Once I was "cured" after the polio I was supposed to be like everyone else, although I had different shoes, and, later on, serial casting and PT. I was supposed to simply do everything anyone else did, although I now know I did not "feel" like anyone else. I was more fatigued, and in more pain.

I pushed through, and went through pregnancies, births, brought up kids, divorced, got more degrees, moved with one kid to the states to make a living, got even sicker and more tired and still pushed on.

It's hard for me to stop. I always have this underlying guilt that I am sitting and doing "nothing". It goes on and on, and everything is an effort.

Since I injured myself I am in constant pain from my back and shoulder, have had hospitalizations because of ...what? Lupus? Who knows? I have pushed through it all to stay on top of things and independent.

I have a very hard time letting go and resting fully. I know I have to, but can't.

I have to deal with this, and figure out how to live with it. When I can eat and absorb some nutrients I will probably feel better. I think I might try to juice a couple of mild things and see if what I think is right. I felt better because I WAS getting nutrients. If I have another MC bowel attack I will deal with it.

But on and on and on without ANYTHING changing is getting old.

I SO appreciate you! You have a great spirit!

Gabes-Apg · Post by **Gabes-Apg** » Fri Nov 18, 2011 3:36 pm

Lesley

sometimes as I write these posts, i have a lightbulb moment of 'maybe i should listen to my own advice'
i have had many roles where i help others transition with change, and problem solve big issues, it was a bit of a test to listen to my own advice, and achieving MC Management tested my patience and tenancity.

pushed through, and went through pregnancies, births, brought up kids, divorced, got more degrees, moved with one kid to the states to make a living, got even sicker and more tired and still pushed on.

It's hard for me to stop. I always have this underlying guilt that I am sitting and doing "nothing". It goes on and on, and everything is an effort.

My life has had a similar pattern... and that pushing through, working hard technique got me through the first 40 years of my life, now with MC in my life, that system does not work. I have to put myself first (guilt free), i have to rest and nuture my body, invest the time into preparing the meals that my body can handle. There are no easy ways or short cuts.

Joefnh · Post by **Joefnh** » Fri Nov 18, 2011 3:59 pm

Gabes this is an important point for many conditions that require us the change how we handle the energy that we have on a daily basis. I've been dealing with this exact issue for several months to some degree. I had in the past been able to just push through a task, stay up all night to finish a report, and it was really no big deal.

Now the lesson that has to be embraced is to listen to our bodies and commit to what we can do with the aim of maintaining our health. It is hard to make this change if you have been used being able to push through whatever tasks are at hand, but it is a necessary skill to be able to listen to our bodies to be able to maintain wellness. I guess what goes right along with this is patience.

Joe

harma · Post by **harma** » Fri Nov 18, 2011 5:00 pm

My life has had a similar pattern... and that pushing through, working hard technique got me through the first 40 years of my life, now with MC in my life, that system does not work

this could have been my quote, especially that part of the pushing myself, doing it on will power, got me through the first 40 years of my life. Also almost exactly the 40 years, my real big life change came already before MC, in 2007 when is was 39 (so almost 40 years). For two years, I gave up: have to, pushing myself, pleasing other people (without becoming an antisocial bitch, funny things is the more I was "myself" the easier and smoother contact with the outside world was, people really seem to like people who are relaxed and "themselves") and above all doing what I wanted to do. The funny thing is, the less I tried, the more it worked. Everything came to me. Of course I did do things, but coming from an inside source. My decision of moving to Jordan was already made in 2007 after the first holiday here. And also to rediscover how it are the simple small things in life that make you happy, in my case things as classical music, no TV, audio books, close friendships, but sometimes also a short meeting with a total stranger I had a very interesting conversation with and never saw again. I thought this is what life also can be. That it goes smoothly without any real effort. That you "have to work for it".

When I say no effort, don't get my wrong that it means doing nothing or everything goes perfect, but the things that fail just seemed to bother me less and rude people, well they did bother me or made me angry, but was easy to put it behind me.

It was like this until may 2009, when first in a relationship something happened that really hurt me and than 2 weeks later the MC started. And ever since than, I try to get my life back on track, by...trying, working, will power. And of course it's not that I have not done anything. Actually I made a huge life change. But that inner connection my compass in life, is still not back. And what my lessons seems to be at the moment: the more I try to control my life, the less is happening. The more I let go and just "be", the more is happening. Also the MC seems to behave better if I just let go and "be" and worse when I try to control my life.

To get my life really back on track, I have done a coaching path with a very inspiring lady for the last two months. And I finally seems to get back on track again. I discovered life (or god or universe whatever you prefer to call it) is always talking to me (and you). The point is, are we always listening or able to hear it. In my case an example of the non-listening. Last fall (2010) I started Arabic course, I quite, restarted, quit, restarted etc. I want to learn the language, I need to learn the language, was pushing myself, but I really hated it. From the beginning I knew this was not it for me. I thought I was weak, should try harder, work harder, in other words trying to push myself. Well WRONG!!!, life was telling me this is not it for me.

My thought was I will never learn it, I am not talented for it, too stupid etc. It never crossed my mind that to learn arabic, I just needed another learning method. Monday I am going to restart with arabic. With a different language center, with a totally different method. A method that is much more fun, with pictures, listening to arabic, a much more intuitive method of language learning. It is also amazing how this language center was already in my mind last year, but I was not listening. I had an introduction meeting last week with two other people to do it with a group. They quit. I decided to do it on my own than (despite the money) and by a miracle within days a new group has created itself. Just simple by deciding for myself, this is what I want and what I am going to do and the rest was arranged by itself, by life.

Sorry for the long message, but gabes words inspired me to write this. It is that combination of focussing on what you want and make the right moves and let life arrange the rest. That combination of put your energy to something and work for it and just let go and sees what happens.

I still don't have my life totally back on track totally, and I am than more talking about my inside life than my outside life, but after for the first time in 2,5 years I feel my life energy, creativity coming back.

maestraz · Post by **maestraz** » Fri Nov 18, 2011 5:10 pm

Well put, Joe and Gabes. Maybe one of the biggest lessons I have learned in this first year of MC is that, after so many years of putting others (students, my children, etc) first, my body has been telling me to stop (last winter I had no choice!), that it needs attention, and the stressors that aggravate the condition also need attention. At first, I felt so dis-empowered that LC had apparently come out of the blue. At the end of a year, with MUCH help from the folks I have "met" here and a very good GI doc, I feel a little more in control again.

The caveat is, I retired before all this began, or at least before the "big one" hit me, and I, unlike many here, don't have the stress of trying to work/travel for work, raise kids, or various other demands. It's almost as if the moment I retired from teaching, my body said, oh, OK, now you're allowed to get sick, so here goes...

Like Joe and Gabes said, it's all about the energy. You can't expend energy you don't have, whether it's physical or emotional.

And, what's acceptable to me as regards LC doesn't involve perfection, just mostly good enough.

Lesley · Post by **Lesley** » Fri Nov 18, 2011 6:28 pm

maestraz - if you are retired you must be closer to my age. Harma and Gabe are much younger than me.

Pushing didn't really work for me. I could NEVER do what others seemed to be able to do without effort, or so it seemed to me. But I made myself do it because I had a family.

In the last 10 years it has become harder and harder to push to do anything at all, and I don't. People are always trying to get me to do things, like go to the theater, a movie, a museum, out for dinner, and I don't, because I usually can't. As much as I enjoy it I suffer terribly the next day.

When I went to visit my grandkids I had to make sure they knew that there is a lot I can't do with them. This year I can't go because until I know what I can and can't eat, and trust that I won't have a horrible D attack that I can't stop in the middle of a long flight, it's impossible.
I am expecting a new grandson in March, and I am HOPING I can go to meet and greet him, and to see the other 5.
I always stop on the way because my late closest person in the world lived in London (died of cancer nearly 2 years ago), and her 93 year old mother is alive and lives there still. I miss her and so want to visit her.

Since MC it's that much worse. My body just won't let me do very much. The shopping, cooking, cleaning up etc., take as much energy as I can muster, and then getting to the pool (right here in the complex) to move my back so it doesn't lock up, showering and coming back TOTALLY finish me. That's about as much as I can do.
It's not very much at all.

Thanks guys,
I have had my moan, and now I have to go eat something! Thanks for listening.

Robin · Post by **Robin** » Fri Nov 18, 2011 8:04 pm

Lesley,

When your body is tired it it trying to tell you something. YOU NEED TO REST! When we have MC we don't absorb all the vitamins and nutrients we need so we become tired. If you let your body rest and the inflammation calms down you will regain your strength. But listen to your body. It really does tell you what you already know.

Hang in there!
Robin