Tag Archive | sleep

Things not to say to Chronic Pain sufferers…

Photo by Andrea Piacquadio on Pexels.com

As someone who deals with chronic pain daily there are just some things, I
wish people would stop saying to me and to others who suffer from chronic pain
due to illnesses such as Spinal Cord Injury, Chiari Malformation, Fibromyalgia,
MS, and Lupus to name a few. Me and my fellow suffers realize that people just
want to be helpful and offer their opinions and/or advice to try to lessen the
pain or help us find other ways to cope and deal with the pain. Rest assured
that most of us that deal with chronic illness and pain daily want nothing more
for the pain, fatigue, and other symptoms to just go away even if it is just
for the moment.

So here are some things that others would not say to me or to my fellow
suffers:

1) Your pain really is not that bad. Well, let
me say for all of us who suffer from any chronic painful illness, IT IS REAL!
The pain and fatigue are real. The sleepless nights are real. The intensity may
vary during the day, but if we were not taking medication on a regular basis
most of us would become non-functional and have pain of 10+.

2) We all get aches and pains as we get older. Yes, we all
to get more aches and pains, but the pain most of us battling chronic illness
have is intensified. And for a great many of us we begin to experience pain at
an age when we should not hurt.

3) If you sleep more you will feel better. Well, sleep is
important, but unfortunately the ability stay asleep is a challenge. Often even
after a full night of sleep for people with SCI, nerve damage, Lupus, and
Fibromyalgia we still do not awake refreshed because the body does not get into
the deepest stage of sleep. Therefore, even if you manage to stay asleep for
several hours, you are most likely not going to awaken feeling refreshed. This
is the reason that sleep aids are often prescribed. And even then, they do not
always help.

4) You need to get more exercise. Most suffers
have treatment plans which include exercise, but it must be approached slowly
and carefully to avoid triggering a flare. Currently, I exercise at least 1 hr.
at least 4 times per week. When my pain remains low, I take advantage of it and
exercise more. But we must also listen to our bodies and allow for down time
even if it takes more than one day to recuperate. Some days just rolling over
hurts.

5) You do not look sick.  If we let ourselves go and
really showed how bad we feel, then people would not want to be around us. Yet,
when we try to focus on feeling better and put on a “brave face” then we do not
look sick. I know that for me personally when I do my hair and make-up I tend
to feel better even if I must rest afterwards. Remember, sickness has many
different levels and faces.

People mean well. Most often the comment comes from a place of genuine caring
and they just want to help. This note is for them. Please be considerate and
think before you speak. It is not easy for those of us with living with
illnesses that cause chronic pain. It can also prevent an extremely negative
response for the person with the illness. People tend to be a bit grumpy when
they do not feel at their best. May God bless us all as we go on this journey
together.

Spreading Knowledge and Joy

I learned something new and beautiful today and I want to to share it with others. Please take 8 mins and watch the video below. It brings musical knowledge as well as spiritual growth. What a truly amazing God we serve.

http://www.karmatube.org/videos.php?id=1312

Feeling Blessed

Each morning I wake up is another day on my crazy journey, but most importantly it is a day to “keep moving forward.” Although this may be true, it often gets lost in the frustration of living with chronic illness and pain. For me it takes deliberate thoughts of hope and lots of conversations with God to keep me on the right track. It is so easy to see all the negatives which start bringing me down.  If I continue to let the negative thoughts in, I find that my anxiety and depression creep up. This leads to more difficulty controlling my pain and spasticity. This is not to say that there aren’t real reasons for my increased pain and spasticity, but our minds are powerful.  For example, I know that when I am over-tired or catching a cold, the spasticity in my legs is much worse, making it hard to walk because my legs feel like there are 20 lbs. weights strapped to each ankle and I am walking through thick mud. Let’s face it, when dealing with a spinal cord injury (SCI) you never know what weird thing your body is going to do next.

I have found that when my mental acuity is down it is much easier to get stressed and overwhelmed.  Getting a good night’s sleep is crucial, but often illusive. For me there are several reasons. Pain being one, other times it is that I cannot regulate my body temperature, and/or it maybe I just cannot get comfortable.  I eventually fall asleep but staying asleep it also difficult at times. This is extremely frustrating. I use meditation and prayer to help relax me so I can drift off to sleep. Prayer continues to help me in all aspects of my life.

Sometimes days are just crappie and other days are great even amidst the spasms and pain. Lately, I feel truly blessed because I have had some pretty good days. Yes, my pain has been out of control some nights, but I have still been able to the gym and work out on most days, take care of my family, and have spent time with my mom, my 4 amazing grandchildren, and my smart and funny nephew who calls me grandma. Being able to take the kids back to school shopping or just hang out and watch them swim helps put a smile on my face even when I hurt. I believe that God is watching over all of us and He sends little gifts that get us through.