The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

Seventeen Positive Resolutions for 2017!


 

 

Wow, I cannot believe that 2017 is upon us already! Only a few more days and I will have gone through another year with unrelenting nerve pain from systemic/full body CRPS and several other painful illnesses. I have a choice to make, this New year, this month, this week and today. I can choose to get up and start again, to make positive choices and be a “doer”. On the other hand, I can go back to bed, be negative and be a “downer”.  That doesn’t mean that some days aren’t going to be “downer” days.  But we truly must try our best to make the most of each day.  I have decided that some of us may need help getting started with the New Year and those pesky resolutions that we seem to start and never keep.

These are the kinds of things we can all do to help ourselves and each other to have a better year than the one or one’s prior.  Here is my list of resolutions for the New Year, 2017:

  1. First of all, when you start to think more positively, you will become a more positive person.  So first, and foremost start to think more positively.
  2. When  you feel that you are having an especially bad day, take the morning to rest and recuperate. Try to do at least one thing in the afternoon, that will make you feel that you have accomplished a minimum of one activity each day.  This activity may be as simple as taking a shower. When you deal with chronic illness, taking a shower can be very draining and therefore, this is an accomplishment!
  3. If you are a woman and you used to wear make up, try putting on making up once in awhile. If you are a man, then try to shave once in awhile and put on some after-shave, even if you live alone. You’ll be surprised at how different and revived it’ll make you feel.
  4. When you wake up in the morning, make a choice for yourself that this will be a “good day”. If not a “good day”; then at least try to make it a little bit better. The more we think positively, the better we will feel. This will lower Blood pressure and negative thoughts etc.
  5. whether you are with a husband, a partner or living alone, try to be more respectful of the other person or people around you. Remember that they are suffering your illness(es) as well. They are missing out when you cannot go with them to places and/or events as much as you are missing out on going. Just be mindful of how your actions cause reactions in the ones that you love.
  6. Get up and out of bed each day. Even if it is only to do a small action, such as moving onto your favorite chair instead of lying in bed all day. If you have a pet, sit with them in a different area. Give yourself different sense of scenery. You’ll see that just getting out of bed can make you feel more positive.
  7. Try each day to either watch a funny movie, read a good book or if you cannot get into this kind of commitment, then find some good articles on the internet to read. These things tend to keep our minds sharp and help with a positive mind set.  Don’t read only the “bad stuff” in the News; or articles about your illness(es).  Try to get “lost” into a fun or funny book /movie or a drama.
  8. If your memory is a bit foggy due to illness(es), try making a list. You can make a list of things that you want to accomplish in this New Year if you want to think long term. If you want to look at this in a shorter time frame then make a list each day, of things that you want to accomplish during that 24 hours. Check off things as you do them.
  9. Try to learn at least one new skill this year. There are so many things to do and many that we can do even if we are not feeling very well.  There are things to do that pass the time, which are more positive.  Some examples of  larger scale activities or skills might be:  sewing, making jewelry, cooking,  knitting, crocheting or learning a new language.
  10. Try new activities on a smaller daily scale, such as:  the new adult coloring books, go to library or get someone to go to the library for you and sign out some magazines and read through different articles, make a scrap or memory book or organize your photos. You could even do something as small as starting a new board on Pinterest.
  11. Remember that “junk drawer” or closet that has been cluttered up all year long? Clean those out and organize and you’ll be surprised at how much better you will feel! A weight seems to be lifted when we start to organize or “de-clutter”! If you cannot do it yourself, ask for help! Many people do want to help us if we allow it.
  12. Join an organization or group that does something good for yourself and others. You could join a support group or start one for a number of different causes.
  13. Volunteer at your local humane society or animal shelter. You can do tasks as simple as petting cats and /or dogs. Give love to an animal and see how that makes you feel more energetic and positive.
  14. Volunteer to read stories to children at a day care center or at your local library. That is a “sit-down” activity that will make you feel useful and children always make us feel loved.
  15. If you cannot get out of the house, then try to do something online. Volunteer to be a patient leader and do positive activities online such as positive Meme’s on Facebook or tweeting positive affirmations for yourself and others.
  16. Make your surroundings seem new, different or better by something as big as cleaning, painting (even just a little bit each day), putting up new pictures or rearranging your furniture. Get someone to help you if you need that. On a smaller scale you can do something as simple as changing your haircut, color or paint your nails. If you are a male, you can buff up your nails, clean them and put on some clear polish to feel and be more groomed.
  17. Lastly, you can find several organizations that need you. There are many church’s, libraries and Senior centers that would love to have you come to visit even just for an hour once per week. If you cannot get out of the house, then try looking into being a Chemo-angel (you write letters or send small gifts weekly to persons going through chemo-therapy). You can start your own “sunshine” type of group and send letters to those who are feeling ill just like you and me. When you do something for others, it helps your own Psychological and physical health.

Above I have given you 17 “New Year’s Activities” for 2017.  If you can force yourself to get up each day, get out of bed and cleanse your body and your soul; you will be one step closer to feeling more positive.  If at all possible, do something each day that makes that day just a bit brighter.  If each day is similar and we do all of the same mundane things, then we will get into a “rut”.  Get out of your “rut” and think of someone else. You will be amazed at how good you’ll feel just by giving some of yourself to someone else’s cause. There are many excuses for not doing, going or getting out of bed. So many of us have chronic daily pain that make it difficult. I understand that because I am one of these people. But I have found that by joining organization(s) in which I have control of how much or how little I have to contribute daily; I can lower my pain if only for a few moments or hours.  By giving of myself and helping others who are also in pain, I can do so many things! What I’m trying to explain is that these things pass the time. The days can become so long when we leave ourselves alone and vulnerable to our own thoughts.  Keep your thoughts as upbeat as possible. You’ll be surprised at how much more energy you have when you are positive. It takes more energy to be negative and many more muscles to frown than to smile. Make someone else smile and you will be a happier person.

I don’t mean that you have to do something every single hour of every day. Of course we all need some down time. We need our naps & restful periods to regroup,recoup and revive ourselves! Have a Blessed New Year and I will be praying and hoping that you have a healthier, more positive 2017! When all else fails, put on some headphones, turn down the lights and listen to your favorite music! See you in the New Year!