Coping with illness

[Colleen1]

I am fairly new to forums so bare with me. In my search for christian information concerning chronic myofascial pain I came across this web site and thought I'd give it a try. I understand where you are coming from with regards to your feelings. I have struggled for over a decade to get properly diagnosed and get help. Where I'm from the doctors don't believe in chronic fatigue syndrome and they don't know how to treat it or myofascial pain syndrome or fibromyalgia. It can also be difficult if the people in your environment or church etc. don't understand. People can be small-minded, as my friend says. I have had a very difficult time this past while with pain especially yesterday and today. It actually hurts to type. However, I read one of the messages and thought I would reply. Sometimes just expressing what one is thinking and feeling is helpful. Something I find truly helpful when dealing with big things and tough feelings when there are no big solutions, is looking for the little things in life that make me smile or that remind me of God's grace or love. I have this poster on my fridge I got from a clinic wall. It says, "I have entered the snapdragon part of my life. Part of me has snapped and the rest of me is draggin'". After I find a healthy way of expressing myself I look for the rays breaking through the clouds and it seems to help. I hope this encourages you. I must go rest now I'm in bad shape.

I came across this radio blurb a while ago of Joni Erickson I think is very worthwhile listening to. Enjoy!

Invisible Disabilites | Radio | Joni and Friends
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[sammmy38]

I am fairly new to forums so bare with me. In my search for christian information concerning chronic myofascial pain I came across this web site and thought I'd give it a try. I understand where you are coming from with regards to your feelings. I have struggled for over a decade to get properly diagnosed and get help. Where I'm from the doctors don't believe in chronic fatigue and they don't know how to treat it or myofascial pain syndrome or fibromyalgia. It can also be difficult if the people in your environment or church etc. don't understand. People can be small-minded, as my friend says. I have had a very difficult time this past while with pain especially yesterday and today. It actually hurts to type. However, I read one the messages and thought I would reply. Sometimes just expressing what one is thinking and feeling is helpful. Something I find truly helpful when dealing with big things and tough feelings when there are no big solutions, is looking for the little things in life that make me smile or that remind me of God's grace or love. I have this poster on my fridge I got from a clinic wall. It says, "I have entered the snapdragon part of my life. Part of me has snapped and the rest of me is draggin'". After I find a healthy way of expressing myself I look for the rays breaking through the clouds and it seems to help. I hope this encourages you. I must go rest now I'm in bad shape.

My step mom has fibromyalgia and is in pain alot. She had to leave her job and they wanted her to see a psychiatrist cause they wanted to see if it was "all in her head"!!!! I feel bad for ya. Hang it there. Look forward to the the brand new body you will have soon

 

[Colleen1]

Thank you for your words of encounragement. They were truly appreciated. When you have illness that isn't widely understood it can make a person feel rather isolated. I am glad you understand Sammmy 38 and I hope your step mom is managing okay. Go with God; He really does care.

 

[pumanator]

ah...I see you have done just that. My brother has the beginnings of Fibro along with various sundry physical problems but he manages to continue to serve his flock...makes me want to hang in when I feel like quitting.

 

[Colleen1]

Thanks for the reply. I think hearing other peoples testimony or experiences is helpful in keeping us objective and real. What I'm trying to say is that the opposite of the 'rotten apple in the barrel' analogy can also happen. Instead there can be a positive chain reaction, like baking apple pie or cookies and having the positive aroma or flavor spread around.

I should clarify that as of 3 years ago I have been diagnosed and the doctors I now have are much better. I'm starting to get access to the proper treatment. I still have to deal with the reality of the illnesses and the situation. Living with pain and all the other symptoms isn't easy. I'm sure you can understand.

 

[One day at a time]

I definitely understand all that you are saying! Being in chronic pain is hard for people to understand. I knew I had fibromyalgia for over 15 years but never wanted to be diagnosed with it for insurance purposes. But now that I'm on disability, and have been released from my orthopedic dr to go to pain management....one of the first things the doctor there said is...you have fibromyalgia! He said he wanted to address that stuff first and then we will work on the other pain things. He also said the first thing he wanted was for me to get some sleep.... I was all for that!! Then he put me on Savella, and I can really tell a difference...at least with having some energy.
So I would encourage going to a pain management and prayerfully you can get a dr. that really has a desire to see you deal with your pain and get you on that path.
Oh...I forgot...they took an ANSAR test that measures your pain, pulse, blood pressure and something else.. and I feel like getting that done...shows people that this isn't just pain in my head...it is legitiment pain that needs to be addressed.

I pray that you get some relief from your pain...but know that you are in a group here that understands what it feels like and can sympathize with you!

 

[Colleen1]

Thank you for your kind words and sharing. I'm glad you are getting help. I agree with you about seeing professionals who are in pain management. Right now the only doctors / professionals I see are from the pain clinic and they have been very supportive. They understand I have been through a lot with professionals, illness, etc. I'm glad you are working on getting sleep. It is so important for us. It makes a big difference for me and my health. I will pray for you.

ps. I wrote more about my experiences, etc. in the category "Chronic Disease" under the heading: "Anyone have CFS?". There is some interesting discussion there.

 

[vespasia]

I can offer you TMN to go with chronic migraine and ECH.
My optic nerve spends so much time being kicked my visual cortex does not register input so good anymore.

Tend to play silly b's with neurologist prescribed drugs to clamp of the worst of the spikey parts.

The best bit about it all can be dealing with well meaning Christians who get a bit of a bee in their bonnet about 'disabled christians should not hold leadership roles' and God should heal everyone.
Pain is boring and old and yes on its worst days does make me wonder if there is ever a cessation of this to be found even in the next world but it does not depress me or erode how I feel about God. It does not destroy my relationship with God rather it is the thorn in my side that reminds me what I would be without God and how much I need God.

 

[Colleen1]

It is difficult to deal with illness and chronic illness seems to go on and on forever especially when you aren't getting the proper rest. I was just telling a friend today that dealing with illness is one thing but, as you have said, dealing with people who don't understand or are rude or unaware can be all the more difficult. From my point of view I'm dealing with the realities of life but dealing with other junk just seems like a lot of unnecessary stress that one shouldn't have to deal with. This is unfortunate because it takes quite a bit of extra energy to deal with other stressors like this apart from the pain and the other symptoms. When you are fatigued energy is in short supply. I want to ween down the list of unnecessary stuff to focus on priorities and other people's nonsense seems to be cumbersome. I hope you get where I'm coming from. I'm not meaning to sound uncaring toward other people who aren't sick. I guess what I'm trying to say is that, for any one dealing with hurtful people it can feel cumbersome.

vespasia, sorry to hear you're ill. It's not fun trying to deal with all these quirky things happening with our bodies. I know medications aren't great for everyone. Medications can create all sorts of nasty problems for me. I have to rely on other things like physio, food, vitamins, massage, sunshine, etc. The one specialist I see said I will be doing this for years. I believe in healing but I also believe in facing life realistically. I don't believe that anyone is a lesser christian or has less faith if they are not healed. In my opinion it takes a whole lot of faith to live with chronic illness and pain. God doesn't take away everyone's 'thorn in the side'. God does things in His time, not my time and me or anyone else forcing the issue isn't going to change or control God's timing. I hope you find some comfort. Take care.

 

[vespasia]

For me the most wry observation given to me was from a prof of neurology; it was his cheerful black humoured comment of 'This will not kill you- you will just wish it would'.

And yet God still has me where I am studying and working in a way that leaves me wondering if this could be a little as Timothy felt out pastoring a bunch of rough sheep on days he would far rather have curled up with the greek equivilant of a hot water bottle and pain relief.

 

[singpeace]

Colleen,

I hate to hear what you've been experiencing. I have fibro but it was a Psychiatrist who listened and gave me medication to help.

I am not suggesting any drug; just telling you what I took that helped me. I have taken Neurontin (a very old drug) for over 12 years and cannot imagine my life without it. It specifically works with over-sensitive nerves and chronic pain like fibromyalgia. It is not narcotic and has caused no side effects for me.

I am virtually pain free now.


Father, take Colleen to the place she needs to find help for her chronic pain. I ask that you heal her body totally, Lord. But I know that fibro can be a progressive healing too. But give her the relief she needs so that she can live without the pain. Give her all your love and guidance and support, Lord. Make her well again. In Jesus name, amen.

 

[Colleen1]

You've made some interesting points. My life experiences certainly have been learning experiences. I truly believe that when trauma comes along I can let it destroy me or I can grow from it and be open to why God allows this in my life. Some times the answers don't come quickly or fully but I've seen God's mighty work in my life with other difficulties and I know He's there and cares. I don't think God heaps junk on us but we are living in a fallen world and that creates problems. One of the things I learned is that we don't have to be on our own. I'm sure you guys can understand that some times it's a matter of finding the right people to talk to.

This discussion reminds me of something a friend said to me before I moved. She said that maybe God is asking me to move not just because He wants me to grow but so He can use me to help other people. This comment really opened my eyes. Up to that point I never thought of myself as a 'missionary'. At this point in my life I think all christians in one way or another are missionaries. I think people look at the lives of christians both other christians and the unsaved. No offense intended to any one but I know my church has it's struggles and at times it feels like I'm in the mission field. I guess it depends how you define missionary. Actually, I think it works both ways. I grow alongside the others in my life.

Thanks to all of you. Discussing things helps put life into perspective. Have a very terrific day!

ps. thanks for caring and praying.... back at ya' guys

 

[Colleen1]

I am tired out and in pain and it just so happens there is lot of stressful stuff happening I don't have the energy to deal with. Right now I feel rather let down by a fellow christian. As we talked about people can be unaware and hurtful. I'm coming to you all to ask for prayer in dealing with people and big feelings and making decisions honorable to God. I'm glad we've been discussing the fact that God is here for us and caring because right now I'm needing to remind myself of that over and over and over again. God bless; take care. Your Friend in Christ.

 

[Colleen1]

Vespasia, I get your prof's joke by the way. Your prof seems to get the irony of these illnesses. I hope you've been managing okay and that your studies are going well. There is always work to do when you're a student.

Take care of yourselves. Talk to all of ya later.

 

[vespasia]

I am a mature student juggling a couple of degrees - one of which is a ministerial theological degree whilst the other ties in with working with stat' services in community outreach.

I really do hold a church office and serve in leadership- hence my signature. With God nothing is impossible even when it seems improbable. Certainly most have no idea just how severe the problems I have are.
I find the disciple of a religious life under order helps in setting a work rest and pray lifestyle though.

 

[Colleen1]

Vespasia, good to hear from you even though I know you are very busy. Yes, prayer and rest does help. That`s basically what I`ve been doing these past two days along with spending a bit of time with a friend. Sorry for not posting sooner.

I don`t tend to pray very long but I pray often. Many times it feels like my day is one long prayer. It`s good to know God is near and with us wherever we go. I find it comforting He wants me to go to Him in truth. It`s rather refreshing there is no pretense with God. He loves me despite my fallibility and I can go to Him and share this and the rest of it.

I spent time today talking about theology with someone who works at a Bible school. It was good just to hash things out in an honest way. This was the first time I spook to this particular fellow. I`m glad I took the chance. At times I`m never quite certain what attitudes I will encounter. I`m a thinker and not everyone likes hashing things out.

 

[Colleen1]

The pain in both respects has gotten better. The physical pain and the emotional hurt I felt in regards to my fellow christian. Thanks for praying and letting me share. I hope you all are doing okay. Hang in there God does love us. One of my favorite verses is, Psalm 34:5 Those who look to him are radiant; their faces are never covered with shame.

p.s. I`ve been praying for you all.

 

[Colleen1]

I had quite a bit of pain today and something stressful to do but came out of it all smiling and feeling peace. So I consider this great.

p.s. I've been praying for you all. Take care.

 

[pumanator]

What price for peace and joy I ask...what I wouldn't give for those. Snowed here so much my jeep got high centered in the road and had to dig it out just to get it back in the drive...blew snow until I was at the ragged edge. I still have neighbors who refuse to help clear the access road that serves them...and they say they love the lord. It is still a struggle for me to love and forgive them and it stands in the way of my peace and joy. I really get bummed when I here from others like us Colleen that are hammered by the body...still in my prayers, thanks for yours.

 

[Colleen1]

What price for peace and joy I ask...what I wouldn't give for those. Snowed here so much my jeep got high centered in the road and had to dig it out just to get it back in the drive...blew snow until I was at the ragged edge. I still have neighbors who refuse to help clear the access road that serves them...and they say they love the lord. It is still a struggle for me to love and forgive them and it stands in the way of my peace and joy. I really get bummed when I here from others like us Colleen that are hammered by the body...still in my prayers, thanks for yours.

I'm glad to hear from you. I was quite ill on Friday afternoon so I needed to rest quite and bit and something stressful came up on Saturday. I've had a full two days. I know what you mean. We are dealing with so much stuff, like physical pain every day, and then on top of that it seems other people can be difficult and create unnecessary stress. I think it's especially difficult when other christians are hurtful. God accepts a wide range of people into 'the fold' but not everyone seems to understand certain things. Believe me I am having trouble with this issue. I'll continue to pray, even if difficult people don't change maybe you'll be able to find some peace and comfort.

p.s. thanks for your honesty; take care