Feb 17

Parenting with chronic fatigue

Posted in Life Rambling

Parenting is exhausting. What do you do when you have extreme fatigue and illness dragging at you?  It is easy to tell yourself, “just one more thing” or “I’ll figure a way to make it happen.”  Then you have the pressures from our loved ones. A child not understanding why mommy can’t come out to play.  A husband who just came home from work and doesn’t understand why dinner isn’t done.

Are we failing in some way? In many ways? I sometimes think that.  I always think “I should….”  or “I could..”, “If I was super mom I would”  I call it the ‘oulds. Those things that didn’t get done that leave you feeling guilty.   Are we super women? No,  sadly we are not and despite what the TV would have you believe neither is the next door neighbor.  So revel in your lack of a cape. Let go of the guilt. The Lord has no intention of you sitting on your bum crying for one of the ‘oulds!

So you have fatigue problems. I do too and it can destroy a day. While sick this past winter I was able to get from my bed to the couch. That was it I slept for the day. Not well, with that type of fatigue sleep no matter how much you sleep it is never enough.  I was only able to relie on  my hubby to take over the kids. When I had to tell a child that I was too tired I always hugged them and asked them to pray for me. I told them the truth, that I wanted to get up but mommy’s body was too tired.

Children can better wrap their mind around a problem if you give them a solution. I told them to pray. My children love God and believe that the Lord will heal me. That was something they could trust in.  By hugging them and letting them know that I wasn’t happy too. The situation became mommy is not sleep because she wants to but because she is sick.

Be open with your husband and  tell him how you are feeling. Don’t expect his ESP to pick up on your slumped shoulder or cough to let him know. My hubby always tells me to talk to him and try to be precise. Like are your legs jittery? For him I believe it is because he is a fixer. Present a problem and he works out a solution. Most men are that problem oriented.

Even if you are left without the energy to help with the house or other normal “wife ” duties. Try to uphold your Biblical wife duties. That is to support your husband. Be of a mild, joyful manner so that he is uplifted by your very presence.  Together a wife and husband are incredibly strong even when one is sick. Think why else would Satan be trying so desperately to destroy that which God has put together. He knows that two in Christ are ten times stronger and will grow stronger as time passes.

Chronic fatigue is a limitation but it is not an end to a quality family life.  Take time to enjoy your children. Let them know how much you can do in advance, such as mommy can play cards with you but I can’t go to the park. Talk to your husband be clear and loving. Trust that he will protect and help you through you troubled times. Uphold him so that he knows you will support and encourage him at all times. Trust in the Lord.

God bless

The Looney Lupie Lady!

Feb 3

Parenting with a chronic illness

How do you cope with parenting and a chronic illness? There is often chronic fatigue and or weakness with illness. You have to take medications often. Doctor appointments, lab draws. The list at times can seem endless. What ways do you use to get through the day. NO what things do you use to thrive!

!. Food There is an endless need for food and food preparation. Throw in any variant such as Celiac disease and you are forced to make all your food. The more mouths you have to feed also plays a role in food preparation.
Get some premade meals if you can. Or mixes that are easy to whip up. If like me, premade items are slim pickings. I make pancakes on the weekends when hubby is home to help. We often make double or even triple batches. The pancakes freeze well for a quick breakfast or pancake peanut butter sandwich :)
I am going to get the book that talks about one month cooking. I’ll let you know how that turns out.

2. Use your resources wisely. I have my husband help with food on the weekends so I can try to work beside him making ahead a meal for the coming week. I have a list of friends that I know if I wake up in the morning and have to take strong medicine for my lupus, or I am exhausted I can call on short notice and they will come watch the kids.

3.Never under estimate calling on the Lord for the strength to get through the day. There are times especially at the end of a grocery run that I over did it. I call on the Lord to help. I don’t use Him as a last resort rather I remind myself that it is His strength I live on continuously.

4.Dr appointments, lab draws, therapy Never lie about where you are going or why to your children. Don’t think of it as a scary thing but a trust issue between you and your child.

“Mommy is going to the hospital. I need the drs to help me feel better. I will be back as soon as I can. Draw me some get well pictures!” That was what I said to my little ones when I had chest pain and was on the way to the hospital. I was fine. Well other than the dratted lupus.

Other medical things may actually encourage an open interesting discussion of medicine. The charts are a great way to teach your child and yourself more about the body! Use what God hands you!

This topic will be continued in the near future. Right now I have a little one crying in her sleep. So I am doning the super mom cape and flying off to the rescue.

GOD BLESS!!

Jan 19

My life of lupus melodrama

Hi everyone! I have lupus. Yup I am still getting use to saying that. It almost feels wrong. I keep waiting for the dr to call and say “oops we made a mistake it’s all in your head”  Hmm sounds like I need therapy? No not really, I think…

When I was in middle school I started having problems with super cold hands and then feet. I heard the name Reynaud’s but no one was really upset, so I forgot.  Later I joined the Navy after 6 months of fun and sun in Puerto Rico, I got sick.  I had a strange face rash and aches but worse of all I was passing out. I went from military hospital to military hospital. Of note Walter Reed is as bad as the media portrayed them! I finally got a medical discharge with no reason for my problems. Just a note in my file that says I show labs and signs of a medical problem but since they were unable to affect it with medication it was deemed at least partially “A white hysterical female” psychiatric problem.

I did find one wonderful thing in the Navy! My husband. We were married.  We have had seven children. Two of my babies are in heaven one I believe is directly linked to lupus.  Other than my first pregnancy every baby was a hard fought battle. After my last little one over a year ago I began getting really sick and run down. Don’t laugh there is a difference from being tired parenting 5 children and this kind of tiredness.

I started to redo the garden in the spring. Then my hair began falling out! ECK! Okay I had one gray hair and I didn’t dye it. I’m not particularly vain but losing my hair scared me. The dr didn’t seem overly interested. The summer wore on I got sicker and sicker with each weekend’s gardening. Finally I stopped.  I went for one last try after I was put through the ER for chest pain. The dr, this time was a sub dr,  He kindly told me I was that age to begin losing my hair and getting aches and pains…. I got a second opinion.

On my 33 birthday I got the call from my rhuematologist. She told me I had Lupus, Celiac disease, and most likely Mixed Connective Tissue Disease. I actually cried,  for happiness. Strange I know but know I knew I wasn’t crazy! I had fought for over 18 years with thinking I was being melodramatic, or a loser. I am neither! I also now had a chance to try medicine to help stop from getting worse, and a chance at feeling better.

My lupus melodrama has been a long road. It’s not over. Sad to say my experience is not terrible different from many with chronic illnesses.  I have just picked up book about chronic illness called “Life disrupted: Getting real about chronic illness in your twenties and thirties” by http://www.achronicdose.com/ her weblog is

God bless friends see you tomorrow!