- Diseases, Disorders & Conditions
How to Fight Pain and Chronic Fatigue A Personal Story
Pain can make you feel Helpless
Smell the Roses Photos of myself with friends of family
Dealing with my pain
I have come to see how many of us are living either in chronic pain or fatigue for various reason. I felt as though I was so alone and now I feel like I should share some thoughts as well as some of the things I have learned with my walk with chronic pain.
I have or had boundless energy prior to the onset of my Lupus, up at 6 am ready to face the day ahead. With the lupus flare and later a severe back condition I started to lose my zest for life.
I have learned some things along the way. I have to take each day for what it is. If anything this pain has made me more patient and compassionate. Pain is not something you can see so many of the people around me, even my family, do not understand how much it is effecting my mood, feelings and ability to function.
This is where I have to learn to let things roll of my chest when I feel as if I am being judged. Many people will come to see you as either lazy or antisocial and I am neither. If I have a good day I tend to err on the side of doing way too much because it feels sooo good to be living and moving. This is good in that it builds my self esteem and gives me the sense of accomplishment that I long for so much, but usually I end up paying for such days with severe pain that evening or even for days to follow.
So much is expected of us as wives and mothers that it is easy to fake it. I try to put my happy face on. When I drop my guard my family wants to know what is wrong. My husband is finally coming to understand my limitations and helps me out by not caring if we don't have a three course dinner. He still can't understand why I would rather stay at home and eat a light dinner, watch a movie and relax versus going out to dinner. These things take energy which I hold at a premium. We have become quite adept at cooking healthy easy meals, like salmon burgers with fresh spinach and sweet potato fries or grilling our favorite fish or chicken outside and using cold brown rice mixed with raw veggies, slivered almonds and a vinaigrette dressing poured over it. Add some fresh fruit and you have a great meal.
I have tried so many things to make myself healthy again. Aside from what my doctors recommend. I take supplements. Vitamin D, my levels have been very low in the past. I now take antioxidants and probiotics as well as B complex and magnesium and calcium for adrenal fatigue. I go to acupuncture with my daughter. I also am able to give myself a B12 injection monthly. Not sure how much it helps (maybe more mind over matter)!!!!
Recently I started using wheat grass protein and I make a high protein antioxidant breakfast. This give me the energy I need. I have been adding coconut oil and/or flax seed oil, both of which help us with reducing belly fat.
I have cut out most carbs and gluten products because so many people told me it would make me feel better but I have actually found that has not been the case. I have not seen a great deal of change in my condition from this at all so I am slowly adding bread back into my diet.
I would have to say the biggest help is keeping stress down, if that is even possible. I try to get outside most days because the fresh air and sunlight really seem to help. Stress is my worst enemy. I have a tendency to worry about people and things and try to be a pleaser (the middle child syndrome!!!). This can take my stress levels over the top.
When I wake up I usually hurt quite a bit and I have to use self talk to get past this. As you can imagine depression is a natural consequence of waking up feeling "crummy". I tell myself it will get better, this is normal for me and as I move and have breakfast it usually does get better. That first initial realization that I am tired and hurting when I open my eyes can be a killer. Those of us in chronic pain have to try to fight the negativity that accompanies this and push forward, Spending a few minutes in prayer and meditating on scripture helps me tremendously. Of course I usually am sitting with a cup of coffee my hubby has prepared and already taken my daily medications.
Often I will slip on some comfortable clothes and pull up my bed to feel as if I have already accomplished something. Later in the day it feels good to shower and put on some sunscreen, blush, mascara and lipstick. it is all a process. My sweet husband tells me to just jump in a hot shower first thing in the morning, but when you have the energy of a deflated balloon this is not appealing till later in the day. We used to have a functioning hot tub which helped quite a bit. I would often wake in the middle of the night in pain and slip into it long enough to soothe my muscles and joints and go back to bed. Unfortunately it has been out of commission for quite a while and heating water 24/7 is not something we look forward to facing early retirement.
I would love to go for massage more but again that takes energy,scheduling appointments, getting there and even making chit chat at your massage appointment.
We try to buy my groceries in bulk so I don't have to go back often. We have discovered a grocery store chain (Aldi's) that has incredible prices and just about all you need can be found within the store's small 4 isles including organic ( see article on the Dirty Dozen) This makes shopping so much easier. They do not take coupons either which I somehow feel obligated to use at regular food store chains. I also use Warehouse clubs like Costco and Sam's to stock up.
Listening to my body has been something I have not been very diligent about but when I do the rewards are huge. Examples; go to bed at the first sign of fatigue, ( I don't sleep well so I take melatonin about 7 pm with great results), eat whenever hunger or thirsty.( You need to stay hydrated) I take my pain medication before the pain becomes unbearable. Take frequent rest periods; do not over commit; try mind control to keep from getting into bad moods or letting little things hurt my feelings. I like a quote I found on Pinterest " Every 60 seconds we are angry is 60 seconds we have lost happiness".
It is especially important to get together with friends. I admit I have to really work on this because of lack of energy but I do I notice how much better I feel afterwards.
Chronic pain sufferers, like myself, need to try to not hide our feelings too much, as we can find strength in numbers and the more we share the less alone we feel. Be careful not to complain constantly and be labeled a complainer. Everyone has problems and you will always find someone in a worse condition than yourself.
Spend time alone with your spouse or significant other daily. Taking short walks are great for both of you.
I used to do exercise at a gym near our house but we have since moved. I found this to be quite an energizer and something I need to force myself back into.
Daily rest periods are awesome but be careful if you are a poor sleeper. Maybe just stop and close your eyes for a few moments and listen to some good music.
It is very difficult to live with chronic pain but try to live in the moment and focus on the small blessings brought your way each day and you may find yourself a little bit happier.
We need to try to focus on the things that aren't hurting each day. I am not saying be a saint but positive energy feels better than negative energy and it takes more energy to frown than to smile. I try to greet my family with a happy comment and a smile when I see them.
One HUGE struggle we have is scheduling because my disease is so unpredictable. I know this frustrates my family and close friends and I wish so much things were more in my control but again you have to think of your own health or no one else will.
Learn to say no. Easier said than done, but if you are a people pleaser and have chronic pain or fatigue you will find your need to please is causing more harm than good. People will love you whether you are always doing something for them or not. Let them know how much you care and be yourself.
Surround yourself with things that are beautiful to you. Paint your home in soothing colors like greens and blues. It amazes me how much our environment affects our moods. Yellow is also uplifting to me and our den and front hall are yellow. Bring in some flowers from your yard or grab a small handful at the grocery. Place little bouquets all around your home.
It is easy to say try to smell the roses and enjoy the good times but you have to remind yourself to do it. Soon it becomes a habit.
Try to love yourself as God loves you. Self love is hard but you need it to get through any chronic illness.
Life is full of Happiness and Pain
Links for more reading
- How to Beat the Scurge of Chronic Pain
Pain can be constant but today doctors so much more about how to deal with it using rest, heat, pain patches and positive thinking.
- Ice Packs and Other Cold Treatments- Benefits for Pain and Swelling
Ice is an inexpensive yet very effective treatment for pain, inflammation and swelling. Most clients do not appreciate the importance of cold treatments. Icing can be accomplished through ice packs, ice bath or direct ice massage.
- Top 10 Ways to Relieve Stress
- Women Feel More Pain : Discovery News
Women rate pain higher on a scale of 1 to 10 than men for the same conditions, a study finds.
- Systemic Lupus Erythematosus, symptoms and treatment...
My ordeal with lupus and how I got through it.
- Systemic Lupus, How to Deal with The Diagnosis.
How I was diagnosed with lupus .
- How long to Live with Severe Back Pain
How you feel when you have a herniated disk and what are some of the various treatments i.e.. physical therapy, surgery, medical, weight loss.
- Get Rid of Chronic Headache Pain Once and For All.
Headaches what causes them and how we can be more aware of treatment and prevention
© 2012 Nancy McClintock