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Old 12-07-2009, 03:09 AM   #1
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Just need a little support...

I usually don't put out posts myself but I am at the end of my rope, not in the bad way, just frustrated with all of this.
It's been almost 6 years!!! I know so many of you have had more painful years than that but we all know that when it is happening to you the time goes so slowly and answers rarely come. You are lucky if you can even find a doctor that will listen to you.
I had a tumor in my head which I had out in July, it was benign so that was good but I thought a lotof my problems may have gone with the tumor but in the luck that is mine things have gotten worse. The pain has spread even further to my arms and legs. Now it's just everywhere. Plus, I don't think anyone believes me. I think they believe I am looking for attention, what's the funny part is that I get none of that!! It's the opposite! Yesterday was my birthday and I used to get at least 10 or more calls. Yesterday was the first time I didn't get any. So then I was upset and my husband was mad because I was upset so it just was a bad day all around.
What do you all do to pick up your spirits? I feel I do well then something else happens and knocks me down again. I keep getting back up but each time it feels a little harder to do.
Any ideas or quotes anything would be great. I don't want this anymore! I want to wake up tomorow and be back to where I was six years ago. I know that's not possible but it don't know where to go from here.
Thanks for listening.
Tina

 
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Old 12-07-2009, 04:14 AM   #2
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Re: Just need a little support...

I found interesting that when a person is not experiencing the suffer, how sometimes that it is hard for them t understand other that are in pain. And unfortunately it can get to the end where they even don't believe that you have a problem in the first place. I am realyl sad that this is happening to you.
Have you tried to talk to some professionals about this?

Best wishes to you.

 
Old 12-07-2009, 05:29 AM   #3
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Re: Just need a little support...

I understand completely how you feel. My mother had her 70th birthday party a couple of days ago and also my sister. They where both fussed over and I was so happy for them but I have been thinking about my 50th birthday coming up next month and I feel that there won't be much of an exciting day for me. I have been in pain now for over 8 years and your friends and relatives seem to loose interest in your problems and suffering and I am thinking that as it is a milestone for me to have got this far, I would love to have a big party. But I know it will not happen. I have no friends to ask and relatives are really just not into me anymore. I can't stay out for longer than a couple of hours so I probably won't even bother going anywhere. I am sure mum will make a cake for me but it will be a very quiet one. Not like they used to be. Out for drinks or lots of presents I don't think so.
So I think it will just be another day of pain and suffering. I might have to even come here to share my depression. Sorry about that, I am so down at the moment, just more and more pain.
I wish you a happy birthday anyhow. Allan

 
Old 12-09-2009, 10:32 AM   #4
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Re: Just need a little support...

Allan,
Thank you for your birthday wish it means so much to me as does your post. For that I am grateful to you and wish you in advance a very happy 50th birthday, it is a milestone. I don't know how long you have been suffering with the pain but to get to 50 is a big deal. Every day is a struggle and it feels like more than one day. Some days feel like a whole week. I understand your longing for the way you used to celebrate because I feel the same way, and a birthday tends to be a different day for a lot of us with CP. If you need to feel better on your day come out here and let us know. Holidays, birthdays, family events are all difficult for us. Is there anything that you like to do that you can do that would bring you some joy? A cake with your mom doesn't sound bad, I didn't get a cake LOL, I know it should be more and you want it to be more and you know that it can't and it hurts, makes your heart ache. My wish for you is that it turns out to be a better day than you imagined. That you have some unexpected surprises from others or within yourself. Ask your guardian angel to have one day where the pain isn't so bad, just to enjoy your big birthday. My heart goes to you, I know how you feel and what you are going through. Smile at least because I said you made me feel better even though you are almost a world away.
Hugs!

 
Old 12-09-2009, 01:22 PM   #5
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Re: Just need a little support...

Well, it's late, but happy birthday Tinabean! (that's my party hat!!)

I know what you mean. I give and give and give to others. I do as much as I can to help others, and then when I need something, or someone to be there for me? Nada!

I know you'd love to be back to what you were before because I've wished so many times that I would never have allowed the first surgeon to work on my knee. He is the reason for all my problems today. BUT, we can't go back, and we have to work with what we have.

On thanksgiving, I was thinking to myself about how bad I was going to be hurting after traveling to and from my mother in law's house all in one day since I had to work the day after. She lives in the next state. I was starting to get upset about knowing I would hurt really bad for days after. Then, it dawned on me. I maybe shouldn't get so upset about the pain because the fact that I hurt means I'm alive. I know that my not sound like much, but it did help me for some reason.

And don't feel that your pain isn't as bad as someone else's pain. Pain is relative to the person feeling it. Yes, there are people who have bigger problems, BUT that doesn't mean your issues aren't any less important to your daily life you know? It's ok to be overwhelmed and it's ok to have days when you do feel sorry for yourself- you are only human. The key is that you pick yourself back up and move forward. You are doing that and this sweetie is a positive thing.

You can always come here and get tons of support, information and understanding. I think it helps to know you aren't alone.

Take care, and have a great day!

(((hugs)))

 
Old 01-16-2010, 05:14 PM   #6
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Re: Just need a little support...

Quote:
Originally Posted by tinabean34 View Post
I usually don't put out posts myself but I am at the end of my rope, not in the bad way, just frustrated with all of this.
It's been almost 6 years!!! I know so many of you have had more painful years than that but we all know that when it is happening to you the time goes so slowly and answers rarely come. You are lucky if you can even find a doctor that will listen to you.
I had a tumor in my head which I had out in July, it was benign so that was good but I thought a lotof my problems may have gone with the tumor but in the luck that is mine things have gotten worse. The pain has spread even further to my arms and legs. Now it's just everywhere. Plus, I don't think anyone believes me. I think they believe I am looking for attention, what's the funny part is that I get none of that!! It's the opposite! Yesterday was my birthday and I used to get at least 10 or more calls. Yesterday was the first time I didn't get any. So then I was upset and my husband was mad because I was upset so it just was a bad day all around.
What do you all do to pick up your spirits? I feel I do well then something else happens and knocks me down again. I keep getting back up but each time it feels a little harder to do.
Any ideas or quotes anything would be great. I don't want this anymore! I want to wake up tomorow and be back to where I was six years ago. I know that's not possible but it don't know where to go from here.
Thanks for listening.
Tina

 
Old 01-17-2010, 09:54 PM   #7
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Smile Re: Just need a little support...

Happy Belated birthday Tina and Happy Upcoming Birthday Bruce..

I recently attended some life workshops and here are some of the things I took away from it that have helped me..

1) Be more outwardly focused. This accomplishes an number of things. First you don't dwell on your condition. Secondly, doing things like posting on these boards about other people's issue and offering what help I can makes me feel better. Just knowing I helped at all makes me happy and that gives me an endorphin release. Our bodies own pain killer.

2) Look for ways to keep distracted. I am currently working on a sudoku book my brother bought me for Christmas, to try and regain some of the mental acuity the medications have deprived me of. I also play online games with my girlfriend and am part of a huge Online gaming community that I join in 2001 and is actually how I met my girlfriend. The community is all about giving and even though I have only played my latest game for 11 months I have been given so much I leveled up quickly and am playing with the same quality of equipment as my friends, so I can join them in whatever quests they are doing together. I in turn contribute back what I can and its a win win situation. PM me if you are interested in online gaming.

All of these things I can do while laying down in bed...

3) Take control.... Its taken months but I finally got the letters I needed from my doctor for Vocational Rehabilitation and a permit to take my specially modified electric assisted bike on the bus and on the trains using the handicap ramps. Also I'm proactive in my treatment... researching online... reviewing my charts with my doctor... asking about alternative treatments and how they relate to my condition...

I'm persistent to the point of possibly being accused of being too stubborn but when they know you aren't going to sulk off quietly then they will eventually give you something you need. Mind you I am always polite and considerate in my requests but I don't stop asking until I get what I need or an alternative with an explanation of why we need to pursue the alternate route.

I can empathize with your level of frustration... currently I'm looking for a way off the meds. The key is to approach it logically and rationally. Easier said than done, I know.

Call your old friends and talk about anything but your condition. You know they can't possibly grasp what you are going through, so any discussion will most likely lead to frustration on your part and possibly guilt and frustration on their part from not knowing what to say. Talk about books, movies, TV shows... reestablish your relationships conversing on common interests. Or even just listening to what is new in their lives. Rebuilding those friendships will make you happy and bingo endorphins.

Also with your condition you are probably more available if any of them wanted to call and talk to someone. So let them know you are there if they ever need to talk. Maybe they might call you with one of their problems and you can at the very least just listen. Again you help them out they feel better and you feel happy from being a good friend, boom endorphins. You might even have good advice for them coming from a different perspective. Just don't be the victim, "well at least you don't have to live with pain everyday". If they are experiencing some sort of physical pain you can pass on tips on what helps you. Even referring them to these boards could be a huge help. You might even get lucky... they could be looking for help with depression, diet & nutrition, child health, whatever... and on a whim they look up your profile, read some of your posts and all the sudden they have a deeper understanding.

======

Well those are my 3 suggestions.... hopefully they help. If they do let me know I could use the endorphin.

Last edited by Myofascial Pain; 01-17-2010 at 09:57 PM.

 
Old 01-18-2010, 02:12 PM   #8
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Re: Just need a little support...

Hello Fellow CPers,
Bravo to Myofacial Pain. He gave some excellent advice. Reaching out to others can be so very difficult when we are in pain, but it's what we need. I agree that we need to do whatever we can to keep our minds sharp.
I'm one of the lucky ones who's working now, but over the years I've been home for weeks and months at a time with pain, or pain related issues. Like Myofacial Pain talked about, I found that it was important to push myself to think. I also enjoy Soduko, as well as Word Searches. I'd sit and do these word puzzles by the book load.
Reaching out to others is very difficult, but very necessary. I agree that noone wants to hear about our latest aches and pains. I've found that when I'm conversating with someone else to ask them a question about something that interests them. This really helps to take the focus off of the elephant in the room, my pain.
I also agree that we need to be proactive. It seems that when we're at our worst is when we need to be most proactive to get the help we need. At times I don't know where the strength is going to come from to make that one more phone call, or go to one more doctor, but it comes. I can't tell you the number of times I've wanted to scream when I've had to tell a new doctor about my injuries and pain, but I suck it up and tell the story one more time. Then I go home and scream. Somehow God gives us the strength to perservere.
I also agree that venting here on this board has been most helpful. You guys understand me like no one else I know. You guys are in the trenches with me.
Hang in there friends.
A happy belated birthday to Tina, and early birthday wishes to Bruce.
Take care and keep us posted on how things are going.
Peggy

 
Old 01-19-2010, 04:38 AM   #9
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Re: Just need a little support...

I am sorry for the late reply but happy birthday from me too. All the best to you.

 
Old 01-19-2010, 06:40 PM   #10
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Re: Just need a little support...

Thanks Tina and others, I will rest up and hope for a nice day. I can totally understand what it is like to feel let down even though I now feel like it is partly my own fault that I am not proactive with the family and friends. Most of my older friends I have to avoid anyway. They still drink heavily or are into the pot. As I am now clean nearly 8 years I have to stay away.
And family well we all know what that can be like. I have a close tie with my younger brother and my younger sisters two children who are now adults and have always been close to me as a bit of a father figure. I am so happy to have them and my parents who I can talk to about anything. Not like my older half sister who is good too me at times but is very judgemental of everyone but look out if you upset her.
I just got blasted from her because her partner cooked dinner and it was a big deal because she usually cooks and because he is on holidays he cooked up this feed of spaghetti and meat balls but he used beef and pork mince with herbs. This is not one of my favourite meats and I left some and when asked how wonderful it was I just said that I liked it but prefer not to have pork and herbs in the meat.
OOOPSSS!!! She blew up and said I can cook my own in future. So now she has upset me and I have had to go outside for a while. I don't know why people have to raise their voice at me I have trouble keeping the tears back at the best of times. So I have to hide them from her. I am not going to give her the satisfaction of seeing that. My trouble is I am honest about others but I do get upset easily myself when criticised, it seems to just put me over the edge and I get teary. Oh well I should have just said it was wonderful and not brushed anyone the wrong way. The problem is that I am on the edge of emotion always because of the pain, but others do not understand.
Tina, I really hope your husband comes to realise how this disease makes you emotional, otherwise you will end up hiding your feelings from him and that is a shamed. In a marriage you need to stay on the same side and be supportive to each other. I wish you all the best.
Allan.

Last edited by allanbruce; 01-20-2010 at 01:30 AM.

 
Old 01-20-2010, 11:14 PM   #11
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Happy Birthday To You!

This subject matter did hurt my heart. For me coming to terms with chronic pain is hard. Then to deal with the life changing results such as people avoiding you can be heart breaking. I think that if people are avoiding you (due to your chronic pain) it is because the other person does not feel comfortable with the situation. The advice about reaching out to your friends and talking to them about movies, tv shows, and light topics is fantastic! Chronic pain is can be very difficult for a marriage. For me it is hard to share my feelings about chronic pain because I am very sensitive about it. For example, when all I can do is lay in bed I will get very sad. I can begin to feel as if I do not deserve and am not worthy. Then I can start watching a television series and get to a place where I'm not happy but I'm not in a dark place either. Then if someone (like my husband) says "all you have to do is lay in bed all day" I feel horrible. Then I can't speak because I do not even know how to explain how horrible I feel and laying in bed should be looked at as my torture.

My point is: It is hard! Everyone having a Birthday, Happy Birthday! My Birthday is this Saturday. No, I do not have any exciting plans. I will not have any friends or family giving me a Birthday Party.

I do wish everyone on this board healing and happiness.

 
Old 01-21-2010, 03:38 AM   #12
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Re: Happy Birthday To You!

Quote:
Originally Posted by VickVictoria View Post
This subject matter did hurt my heart. For me coming to terms with chronic pain is hard. Then to deal with the life changing results such as people avoiding you can be heart breaking. I think that if people are avoiding you (due to your chronic pain) it is because the other person does not feel comfortable with the situation. The advice about reaching out to your friends and talking to them about movies, tv shows, and light topics is fantastic! Chronic pain is can be very difficult for a marriage. For me it is hard to share my feelings about chronic pain because I am very sensitive about it. For example, when all I can do is lay in bed I will get very sad. I can begin to feel as if I do not deserve and am not worthy. Then I can start watching a television series and get to a place where I'm not happy but I'm not in a dark place either. Then if someone (like my husband) says "all you have to do is lay in bed all day" I feel horrible. Then I can't speak because I do not even know how to explain how horrible I feel and laying in bed should be looked at as my torture.

My point is: It is hard! Everyone having a Birthday, Happy Birthday! My Birthday is this Saturday. No, I do not have any exciting plans. I will not have any friends or family giving me a Birthday Party.

I do wish everyone on this board healing and happiness.

I feel sorry for you. It is the same situation i feel before.
1) U need to do exercise (physiotheraphy) without fail
2) discipline is very important
3) Do not over do whatever u do
Learn how to do relaxation.
Go and buy book "HOW TO MANAGE YOUR PAIN" its worth reading

 
Old 01-22-2010, 03:00 AM   #13
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Re: Just need a little support...

Vick I am so sorry for you not having someone over for your birthday. I am very lucky that in my family it has always been a tradition to have a cake and blow out the candles even if it is only Mum Dad and a sibling. I will at least have a couple of the family over to my sisters for my birthday which is next week as they actually got together and arranged an afternoon tea. That is probably the best time for me so long as I have a lay down after lunch.
Sorry if anyone thought it was earlier than that. But it has been on my mind all month. The big 50. So I wish all of you who have a birthday this month all the best. We do deserve some love and affection even if it is just here.
Allan

 
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