Posted tagged ‘Support group’

Fibromyalgia Pain

June 12, 2012

I have constant pain from fibromyalgia.  Life with constant pain causes many emotions, thoughts, and trials.  I have been in constant pain for over 10 years now.  I have thought before that I would give almost anything to have just one day without pain….. no, I would even take just one hour without pain….. I would even settle for just ONE MINUTE without pain.  Pain is a terrible thing to deal with every second of the day.  I try to do many things to help my pain and to try to take my mind off of the pain.  Some of these are writing a blog, connecting with distant relatives on facebook, water therapy, working in my flower bed, going on an occassional lunch date with a friend, etc.  I miss the person that I used to be.  The Ginger without pain.  I was without pain and didn’t have to think about pain.  I am a different person now.  Sometimes when you see me I may not look like I am hurting, but the pain is there eating away at me.  Just like others with chronic pain, I am pretty good at hiding it and putting a smile on my face, but the monster “PAIN” is still there.  Sometimes it is so great that I have to go to bed or I have to take a pain pill.  I don’t like taking pain pills.  I don’t want to get hooked on pain pills or get to the point that they no longer work for me.  When I take them they only take the edge off of the pain, but it makes it more bearable for me tolerate.  My pain now never gets below a 3 and goes to a 10.  How nice it would be to even get to 1 or 2 on the pain scale.  Hopefully there will be something to help me down the road.  (By the way when I talk about the pain scale – I had to revise mine a few years ago because my pain would go to a 15.  I no longer have pain less than an 8 on my old pain scale – which is now a 3 on my new pain scale.)  I hope and pray for relief from my new life – the one of  constant pain.  The thing I concentrate on is living my life to the fullest.

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Why me??

May 31, 2012

If you are like me you have asked that question a hundred times.  Why do I have severe fibromyalgia, why do I have osteoarthritis, why do I have lower back issues,  why do I have constant pain, why do I have to be so fatigued, why did I have to quit my career at a company that I loved, why did this have to affect my family so much, why did this happen to me so my family has to worry about me, why do I have to have fibro fog, etc.

I mostly ask these questions when I have a high pain level that makes my fibro fog increase as well.  When this happens I can’t think clearly and I feel like the weight of this illness is crashing down around me.

When I ask myself these questions I normally think that if someone in our family had to have this illness and suffer so much – WELL, I would rather it be me that anyone else.  I wouldn’t want my husband or children have constant pain and fatigue along with a list of symptoms as long as my arm.  I wouldn’t want my parents, mother-in-law, or brothers to have this terrible, chronic illness.  So if I had to choose…. I would rather it be me.  I wouldn’t wish this disease on anyone!  I am trying to cope and accept this illness, but it is very difficult.  If only I could have one day without pain, or one hour without pain, or EVEN one minute without pain, I would give anything and give God the glory.  Fibro fog is the symptom that I hate the most, but the pain is all consuming and never stops.  I am always somewhere on the pain scale of 1 to 10 – I normally stay somewhere between a 3 to a 10.  A question that my husband asks me frequently throughout the day is “What is your pain level?”  It is like he is my caretaker, but he like to know so he can better help me at the time.  We have been married 32 years and he is a keeper.  He wants to help take care of me the best that he can and tells me frequently that he will always take care of me.  This is very comforting to know because there are people out there that are single or single parents that don’t have the awesome support that I have from my husband.  I don’t know how they cope.  I guess if you have to you just do it.

My husband and I talk frequently about why I have this illness.  We think that maybe it is so we can help others that are dealing with an illness or pain of any kind  in their life.  Sometimes it is all I can do to just take care of myself and then sometimes I am able to get out a little and I will run across an opportunity to help others.  I also blog and post on facebook to hopefully help others and in return it helps me as well.

Please leave a comment and let me know what you think about this and how you cope with the question “Why me?”

I wish for you a low pain day with extra energy! 

Do What Makes You Happy!

May 25, 2012

Life is so busy and can become complicated especially if you have a chronic illness.  I USED to want my house tidy and clean, but I have learned to take care of myself, DO WHAT MAKES ME HAPPY, and then do what I can in the house.  My husband helps as well.  I have plenty that I could do today in the house, but I woke up at 2:00 this morning in pain and couldn’t sleep after that.  At 5:00 when my husband woke up we went outside, sat in our comfortable lounge chairs, enjoyed some coffee, and talked until he had to get ready to go to work.  Then….. I did one of the things that I enjoy so much and is even relaxing.  I watered my flowers, shrubs, and veggies.  Yes, this is something that is enjoyable to me!  Other things I love to do that “make me happy” – just being with my husband and boys, weeding my flower and veggie beds, pool therapy, calling to check on  my Dad & Mom, talking with friends/family or going to lunch, talking with my mother-in-law, making a special dessert for my family, spending time with the Lord,  sending a card or emailing friends that are in another state, getting a massage, going for a manicure, getting a pedicure with a unique design, visiting my parents and family in my hometown, looking at family photos, staying connected with family/friends on Facebook, listening to country music, having a cook-out with all of the neighbors, getting a call from my brothers, and many other things.

My point is life is too short and we try to do too many things and by doing this we sometimes miss out on the important things in life.  Also with a chronic illness I never know from one minute to the next on when I will be too sick to take advantage of doing the things that make me happy.  I have found that sometimes when I am in great pain instead of going to bed or resting on the couch like my body seems to want to do I can go outside and spend time watering or weeding.  Because it is something that I love to do –  it sometimes helps me push through the worst of the pain.  This doesn’t always work but it is worth a try.

For the chronic pain sufferers  – I hope for you a low pain day with extra energy.  Remember, DO WHAT MAKES YOU HAPPY!!

How relationships change when you have a chronic illness

May 16, 2012

It is strange to me how relationships change when you have a chronic illness.  Since I became so ill with Fibromyalgia, Osteoarthritis, & Back issues the relationships with my immediate and extended family are stronger, but the relationships with almost all friends have become more distant or non-existent.  I really miss “my friends” or were they really my friends??  😦

My husband and I have always had a loving and strong relationship, but since my illness our relationship has gotten even stronger – and I didn’t realize that it actually could!  I am grateful that he is so supportive and does anything to help make our lives easier.  I know this is not a “piece of cake” for him.  Relationships with our boys, my parents, mother-in-law, brothers and other extended family members are stronger as well.  I am also so thankful that my family is so supportive.

Friends on the other hand really surprised me.  I mostly had friends from work, friends that I went to church with, and neighbor friends.  My neighborhood friends are still my friends and I still hear from some of my old church friends that I know I could call on at any time.  Work friends that I thought were “my friends” are distant or non-existent except for a couple.  I had worked with some for almost 20 years and I had developed what I thought were really good relationships.  When I had to quit my career (5 years ago) I was VERY ill.  At first I would receive calls or emails from some of them but most just simply forgot about me.  I was too sick for a while to even think about trying to contact friends, and now that I am somewhat better, I normally have to be the one to initiate contact.  I realize that it is difficult to know what to say to people who are so ill, but trust me on this…. just say ANYTHING.  I am still a person and need friends to call and talk, to email me, to talk to me on Facebook, to ask me to go to lunch, etc.

Sorry if I sounded a little pathetic, but this is something that really hurts – way down deep.  Isn’t it strange how relationships change when you have a chronic illness.

Fatigue

May 14, 2012

I am so fatigued today I can barely think.  Fatigue is ever-present in patients with fibromyalgia.  I have spent many days in bed, on the couch, frequent naps, etc.  When my boys were younger they used to call the couch Mama’s charger (like a phone charger).  I preferred to rest on the couch so I could be with them and they got used to me being on “my charger” frequently to get some energy back.  Fibro patients get pretty good at fooling others concerning hiding fatigue and pain.  Sometimes I just HAVE to go to bed and get rest, but normally I try to take frequent rests in a lounge chair, on the couch, etc.  I find that I do better if I try to push myself a little rather than just staying in bed.  I am in CONSTANT pain and never get a break from it.  My Rheumatologist told me a few years ago that it appeared that I had Severe Fibromyalgia and that I would probably continue to have substantial pain and fatigue.  He also said that I would get to where I could tolerate the pain better and I thought he was simply crazy!  I reminded him about 6 months ago what he told me and that at the time I thought he was crazy, because how could anyone tolerate so much pain….. but I do.

The other day I went out to lunch with a good friend and we stopped by a store to pick up some flowers.  After a few minutes I told her that I had to go home because I was starting to crash.  She knew I was tired by that time and asked if I was in pain.  I told her that I am always in pain and yes the pain was getting to be too much and I needed to go home.  She had no idea that I had been hurting the entire time at lunch and the few minutes at the store.  I mentioned earlier that I was “starting to crash”.  What I mean by this is my fatigue is getting too great and I am going to have to lay down very soon.  I don’t do much shopping and I have been out before by myself and had to call my Mother-in-law to come and get me.  We leave my car there while she takes me home and my husband and boys go back later to pick up my car.  Once I was at a local grocery store for a few items and I got to the check-out and realized that I was about to crash.  Luckily one of our sons worked at the grocery store at the time and I asked the manager if my son could take me home since I didn’t feel well and we lived close.  He very kindly let my son take me home and unload my groceries while I went to bed.  W-E-L-L   ……. I am about to crash now so I need to stop for the day and go get some rest.

I wish for you and low pain day and extra energy!


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