New to fibro posting

Well Hi!

This is my first posting on fibro ever! Actually it is my first posting on a forum ever!

I am really struggling with fatigue and work. But here is some background first.

I just got married last week. My husband is from India and I am your average American white girl (sound silly putting it like that but quickest way to describe us). We had a small engagement ceremony and wedding last week out in California with 12 people in attendance. It was a great celebration and I truly loved every minute of it- but man was I counting the minutes until I could get out of my saree and crawl into bed.

In fact, I was looking at all of the photos from my trip to Cali and- WOW do I look so tired. I don't look like myself- or at least my old self.

My doctor ran a number of tests two years ago and said that I have fibro. I, of course, spent 1.5 years in denial. In the last six months, I have finally started making changes to try and live with fibro instead of plugging along and forcing my body to deal with it.

I left my PhD program a year ago because doing research was too hard on my body. I have been working the last 8 months as a contract employee (ie no benefits, paid hourly) doing environmental work. Essentially- I look at spreadsheets all day and analyze the materials that go into the products we build (engineering company).

Every day since I started this job- I have woken up thinking, "I don't know how much longer I can go on doing this."

I used to work three part-time jobs and had a full load of classes. I was a straight-A student and could study 8 hours straight with intense focus.

Now, it is so hard to get my brain to focus and I struggle through work every day. I only get 10% done of what I used to be able to get done and even that is a struggle. I have to push myself constantly. I waste what little energy I have working and by the time I get home- I have no energy for cooking or cleaning or having fun. I live my life waiting for the time that I can go to sleep.

I am considering leaving work and I am thinking about discussing it with my new hubby. However, the idea of a one income household scares him. He is also going through a rough patch of his own as he is adjusting to his first full time job (we both graduated with a master's degree last July).

Any suggestions on discussing these things with him? He has lived with me for three years and knows that I am very tired-but he has a hard time grasping it. For the first two years he said that he didn't understand that there was a difference between being lazy and my being tired.

Advice much appreciated and sorry for the long post!

Shay, welcome to the forum and best wishes and congrats on your new marriage!

Being open and honest about how your condition affects you is very important info to discuss with your hubby. On the top of the page you can find fibro 101...lots of good information you can share with him. The more he knows, hopefully the better understanding he will be.

We are all so differant, but fibromites understand pain and fatigue. Life is still great, the secret is allowing yourself to believe it can be. Doing things you love helps distract pain. We do need to learn to pace ourself, taking time for rest and relaxation. Acceptance takes time. We go through a mourning process of the loss of our old self. It does take time to accept a new normal. Life is all about living, loving and laughing and that can still be done with fibro :)

I'm glad you have joined us but sorry for you pain.

hugs, Robin

Hi, Shay, and welcome!  A new bride!  How exciting!  I was married 44 years ago this month and I still remember it as if it happened yesterday. 

 

I'm so sorry you are dealing with this illness but you can have a full and enjoyable life in spite of it.  The key is to find what helps you keep the pain under control...and the fatigue, too.  I have fatigue but not the total exhaustion type of fatigue some have.  What I do is take vitamin D3.  That will help with pain and fatigue and many are deficient in D.  We get it mainly from being in the sun but most of us are in offices and when we get outside we use sunscreen which blocks the D from getting in our system.  I also use malic acid/magnesium supplements and they help with pain and fatigue, too.  There are links about these two supplements and how they work in your body in Fibro 101...the first thread on the forum.

 

I also stop drinking or eating anything with caffeine in it by early afternoon.  In the evening I like to relax, destress, so when I go to bed I'm more relaxed.  I also have myself on a sleep schedule.  I go to bed and get up the same time every day.  Your body gets accustomed to this and you usually can fall asleep easier.  It takes a while but it really does help.  

 

As far as your desk job, try getting up and walking around as often as you can.  Sitting and laying too long make us stiff as a board and have more pain.  Moving also helps with circulation and it possibly could help with your fatigue.  In Fibro 101 there are some gentle stretching exercises you can do sitting at your desk and no one would know you were doing them.  They were designed for long air flights and help with circulation and muscle cramping from having to be in the same position for long periods of time. You also might want to stay away from a lot of carbohydrates becasue they can make you feel tired, too. 

 

As Debbie mentioned, there are good links in Fibro 101 that you can share with your hubby.  The ones I personally think are the best are the ones called A Thorough Explanation of Fibromyalgia and Doctors Respond to New York Times Article.  Also, when you first open Fibro 101 there is a terrific explanation by Dr. Daniel Clauw that explains in laymen terms what the doctors believe is happening to us.  They think it's more of a neurological problem so that is an excellent read for both of you.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine    

Thanks everyone for your comments!

I approached my hubby last night with an introductory talk on how I am concerned about my ability to work and being tired. His major comments were (1) are you sure you aren't just overestimating how productive and how much energy you used to have and (2) I am sure if you got a job you liked better that would fix it. I explain that- no that is not the case. He seems to partially grasp what I say and then it disappears the next day! This morning there is a new job opening in my field at my company and it would give me more work and extend my contract out another year.

Here I am wondering if I can continue working at all and he is telling me not to be afraid and to apply to the job! As if the reason I don't apply is that I am afraid of failure!

I have sent him some links explaining fibro fatigue and fibro fog so that he can grasp the situation better. I think this will be a slow process that I will need to work with him through and slowly feed him information to get him on board.

Today I am having my worst pain flare up in 4 months- I had been going to the gym regularly until this last month and man oh man did I not miss this pain!