t’s It’s been a long time since I have written. I’m very sorry. Life got so busy and in the way and I just lived it. We lived in an RV for the summer and were not able to build the house we had planned. It was a huge challenge to living in a small space.
We learned we can live in a very small space. It’s almost impossible to get privacy and we became closer as a family. I learned to cook pizza on a grill. It was really great! And many other things can be cooked on the grill too.
Then we moved to South Bend, Indiana, and lived there for 7 months. During that time both my husband and I had surgery. We also had 2 of our older children living with us during that time. We had time to talk and decided that after my husband’s 30 years in a factory it was time for something new.
We moved to New Mexico and became houseparents at the New Mexico Boys and Girls Ranch. We loved working with the children and living on the ranch. We saw the most beautiful sunsets I’d ever seen. Unfortunately, we had to leave there after my Charcot came back and I was not able to walk around and fulfill my duties. We had to resign and move my children’s schools, again.
After that, we moved into Albuquerque in an apartment. I love living in a large city and all that that entails including great hospitals and doctors. I spent most of a week in the hospital in October that I had an infection in the bones. And then found out at Thanksgiving 2019, I needed to have an amputation. In January, a week before my surgery, we moved again. Same apartment complex but first floor. And that is 5 moves in a year and a half.
On January 23rd, I had a below-knee amputation. I stayed in the hospital and then a rehab hospital for almost 3 weeks. I am working on PT and waiting for my incision to heal. I heal very slowly. I’m getting along great in a wheelchair, I can’t use crutches because of carpal tunnel. But I am eagerly waiting for the day to get my prosthetic leg.
I’d love to know what I can help you with. Do you have a struggle you could use help with? I’d love to help.
I know that there are times in life that you are not able to as active asyou would like whether due to sickness, pregnancy bed rest, chronic illness, surgery or accidents. There still are things that you can do to make the most of this time.
I had surgery a month ago and am still non-weight bearing. This eliminates a lot of things that I can do, but not all. Fortunately, there are now knee scooters that work better than crutches. B
Plan
First, if you can plan for this, such as surgery, pregnancy or any illness that you know you’ll have bad days. Plan as much as you can in advance.
Make Meals Ahead
I always try to have freezer meals made ahead. But, when I know I have surgery coming up or for pregnancy I stock up. I make as many freezer meals as I have room to store. If you don’t like to cook, you can pick them up in the store. Now you can even get your groceries delivered. Also, kids can cook. Have a list of easy recipes that they can make. They feel capable and love that they can help.
Kid Boxes
I like to keep some things that they’ve never seen to keep them occupied. Even dollar store play doh or new coloring books can keep them busy. Keep a new book you can read to them while you are lying down. Spend time with them. Kids value times one on one more than anything else. Talk to them, listen, play a game, just be with them.
Minimum Maintenence
You won’t get everything done. You’ll have to learn to be tolerant of that but things still need done. The main things are dishes and laundry. Everyone has to wear clothes and eat. But, you can make it easier. Use paper plates. Or eat finger food that you can use a napkin. Have a load of laundry done and have it brought to you to fold. Another child can sweep. It is amazing how much children can do to help but don’t hold them to your standards. Make them feel appreciated.
Depression
It’s very common for anyone to become depressed after enforced bed rest, injury, surgery, chronic illness or any time you are laid up for a while no matter the reason. It is easy to have a poor me attitude. No ones likes being laid up and a lot of time you’re in pain. I allow myself 5 minutes. to feel sorry for myself. Then I pick myself up, put on a smile and try and be optimistic. Read uplifting books, pray and talk to others. Lean on God. Don’t isolate yourself, that makes it worse. You have more to give than you think you do.
I need to apologize to you my dear readers. I’ve been missing for far to long. I’ll catch up and tell you whats been going on.
Recent Surgery
I have Charcot or CMT as I’ve said before. I also have neuoropothy and both have spread to my hands which makes it difficult typing. I had surgery a few weeks ago for Syndesmosis. Since the Charcot has crushed half of my ankle bones the tibia and fibia had pulled apart. That is syndesmosis and the dr drilled holes in the bones and pulled them back together. I am also non weight bearing on that foot which means a knee scooter or wheel chair. Unfortunately, using my hands that much really reeks havoc on them.
The Best Laid Plans
So, I’m off my feet, mostly in bed so my leg could be elevated and I should be able to get a lot done right? That’s what I planned. You know what they say about the best laid plans. I’ve been in pain, ( not thinking straight), foggy from pain meds (very foggy), or just no words at all would come together. I’ve felt isolated, unable to go anywhere alone and very dependent on others. I hate being a burden and not being able to help my family with barely anything. I’ve had to regroup, make plans and follow through. I need to be thankful for the things that I am able to do. I did my daughters hair and makeup Saturday night for prom. Prayed and read with my children. Held my grandbabies. Look for the good. It’s hard. But it’s the hard God gave me and I must do my best.
Your Hard Things in Life
This isn’t something most of you will deal with but you will have other things. Everyone has hard things in life. What hard thing is in your life right now? Depression, relationship problems, finances, health? Each of you have something that is a struggle. It’s hard to do the right thing all the time. To pull up your boot straps and work. There are days when it would be much easier to watch tv all day. Read a book. Play hooky in life. We have so many manners of escapism available today. Put on your big girl panties and do it.
Blessings
I heard this song by Laura Story and was blessed. It reminded me that God’s way are not our ways. He doesn’t always answer our prayers in the way we think they should be answered. The days I think He is silent are days He still hears my prayers. And He hears yours every day. So when the hard things come how do you deal with it?
Here is the cabinet I use for essential oil storage. I was able to find it at a garage sale for $10! I used to use it in my old kitchen for tea storage but now it’s for oil storage. Essential oils should be stored out of direct light and this is tinted so it keeps the bright light out. I use these all the time.
Some Essential Oil Uses
My favorite oils are from DoTerra and Young Living. They make great therapeutic grade oils and I even use some for cooking.
We use Thieves oil when anyone is sick, rub on the bottoms on their feet and in the diffuser. Ot if you have been exposed to someone else sick. It doesn’t always work but it definitely helps.
I use lemon for cleaning the air. Run it in the diffuser or of ou don’t have one put water in a spray bottle and a few drops of lemon oil and spray the air. I’ve also used it when I’ve made my own cleaning supplies for that fresh lemon scent.
Lavender is great for helping you sleep and wonderful for burns. I had a friend who when canning had a jar explode when she opened up her pressure canner. Using lavender oil not only kept her from blistered but healed her in just a few days. I keep a bottel in the kitchen just for that purpose.
Eucalyptus helps breathing difficulty’s and colds. I use it for bronchitis too.. It gets rubbed on chests, back and feet. It also gets ran in the diffuser.
Peppermint is a great pick me up. It can also help when you are hungry, just take a whiff and it helps suppress your appetite. My children use it when studying for tests too to help stay alert and focus.
Orange, I love orange! Mostly to cook with. A few drops in my chocolate muffins are amazing! Enhances recipes with orange juice and love chocolate protein shakes with a hint of orange. You can also use it with cleaning supply recipes.
Essential Oil Storage
Since these oils can be costly it is important to store them correctly. Keep them out of direct sun. Rotate new stock and old. Make sure they are for therapeutic use if you use them on your skin or take them internally. I have bought some less expensive oils when I have run out or to use whren making cleaning supplies. How do you use your essential oils and how do you store them?
My children and I went to the library, shopping and to lunch last week. It took many times longer than it should have, because of me. Every time we stopped my cam walker had to go back on. Then off to drive. Every time someone went in to get a scooter or go get the wheel out of the trunk for me to ride in. Last week I broke my right foot. My good foot. The one without charcot. Now I have two bad feet. I feel incompetent. I feel like a burden.
Its not the first time this had happened. Multiple surgeries, hospital stays, and several pregnancy bed rests, I learned feelings are not facts. Here are 10 Things to Remember When you Feel Like a Burden
Worth
1. Your worth is not determined by your to do list that you check off. Your worth isn’t determined by who you are not by what you do.
Adjust
2. You can learn to adjust for a while. Most of these are temporary. Bed rest, surgeries, broken bones, all of them are temporary. Look at the end in sight.
Grieve
3. Even if it’s permanent, allow your self a time to grieve and then move on. It doesn’t do you any good to continually dwell on it. But a loss is hard. You deserve to grieve, to bury the dreams that went with the loss. I always dreamed of learning to dance and do a 5k. Neither of those will ever be possible now. I was sad. I grieved but I didn’t stay there. I’ve had to learn to move on to live the life I have now.
Modify
4. Adjust and modify things that you can. I can cook sitting down. It’s not as easy but it’s do able. I use a grabber to reach things. I plan on things taking longer to do.
Do What You Can
5. Do the things you can. Even on bed rest there are still things you can do to help your family and run your household. Use this time to plan. I meal planned, scheduled housekeeping, goal planned, and wrote down what I wanted to accomplish and what i wanted my children to accomplish. I played games, read to my children and lots of cuddle time. They need to be reassured during this time.
Learn Something New
6. Use this time to learn something new. If you’ve wanted to learn something now is the time. You tube has videos for almost everything. Crafty has classes. When you feel like a burden learning something new will up your confidence.
Use Your Time Wisely
7. I know the temptation to sit and watch TV, videos, or Hulu. It’s a way to forget your problems and be entertained. But it’s a huge time waster. Try to spend your time on worthwhile things.
Plan A Project
8. Now is a good time to plan a project. If there’s a project you’e been thinking of now is a good time to plan it. It gives you somethimg to ;look forward to and now you have time,. Plan all the steps, costs, where to get materials, everything you need. Then you’ll be a;; ready when your up and about. Just don’t jump ahead and slow your healing. Ask me how I know.
Help Someone Else
9. You can always help somebody. There is always someone worse off and there are always ways to help others. There are many things I can’t go and get things for someone else but I’m a great planner. I can’t chase my grandson who’s a toddler but I can sit for my granddaughters. I have knowledge and wisdom to share. my children call me for advice, I can listen . There is something you can do to contribute.
Who You Are
10. Know who you are in God’s eyes. Your worth is on who you are. You are a child of the King. You are priceless in His eyes. He know every hair on your head. He loves you more than you know.
Have you had the feeling that you are a burden and more of a hindrance than a help? Please share what you’ve learned through this.
Living with chronic pain can make me focus on everything I can’t do. I can’t go on the hayride with the kids. Or walk with them. I’ll never take dance lessons. I can’t climb stairs. I can’t, I can’t, I can’t. Since having a pity party doesn’t help me or anyone else I need to try to learn to deal with limitations in a positive way.
Accept Your Limitations
I am in a temporary wheelchair or knee scooter. . Temporary as in most of the year, but hope that it’s not permanent. It gets very frustrating trying to get things done. I am over 6 feet tall so my cupboards are arranged for tall people. I’d like to stand for a little bit but I know that would actually set me back. Everyone has limitations in one way or another. I have to focus on what I can do not what I can’t.
Modify What You Can
I have limitations with my hands that prevent me doing a lot of crafts, which I love. However, I do have a daughter that will cut out material so I can sew. I machine sew instead of hand sew since it is so painful. Cook sitting down. I use a paper cutter instead of scissors. And use a grabber to pick things up off the floor.
I’ve asked at my physical therapy for them to find new ways for exercises that I can do sitting. I wrote about living with charcot.
Pace Yourself
I find I have to take alot of breaks. There are only do so many seated activities before I need to elevate my foot. Learning to alternate between activities I use my hands for and seated ones have been trial and error. Now I know how many breaks I need to take between activiteis such as typing or cooking. Then I need to do something different like read or watch a webinar.
Count the Cost
I know ahead of time if I do this I won’t have enough that. Choices I have to make daily, and sometimes hourly. The best way I’ve found to describe it is called the spoon theory.
Look for the Silver Lining
While living with chronic pain is debilitating in many ways, in all things there is a silver lining if you just look for it. I would never have started this blog if I could go and do more. Appreciate the small things. I really have a pretty great family. They take me places, help me around the house. My kids have had to do way more than other kids for years. They’ve taken my place for younger children school activities when I can’t. They’ve taken me to countless dr appt., tests and visited me in the hospital. And unfortunately, learned to sort pills, use nebulizers, change bandages and give meds in a pic line. I have a great family.
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