Most of us have had to cut back on what we do or at least on how we do it. Every day is a struggle to figure out how to get through the list. My favorite is when the doctor or insurance ask what I do all day. I tell them and they are impressed. Then I explain that this is all spread out with lots of breaks to get the pain under control....

I'm curious why the doctor's question bothered you? Sex is a major stress and pain reliever and going without can add to your pain and stress. It also affects your relationship with your spouse. It's not a little thing, especially for a man.

What type of work do you do? Is there any way you could make changes that might help? And have you talked to your wife about how you feel? Maybe the two of you could talk about what your dreams are for the future and work on a plan to get to that point. Often we can make changes that will reduce the income needed to live which would leave you with more time or less pain at the end of the day. The other thing is to look for some things you can do with you wife in the evening that might give you a distraction from your pain and some quality time with your wife.

Thanks Tigg,

Well cutting back on things is one thing. But cutting back on everything is another. I forgot to mention i suffer from chronic pain but maybe more importantly horrible fatigue.
So I guess I thought the sex question was a little strange. But now that you mention it, it would make me happy right?:) Our appt was only 20 minutes so that was one of his few questions. I was a little uncomfortable as it was our 1st appt and a stranger is asking about my sex life?. Maybe on the 3rd or 4th when we had bulit a rapport.

I like the idea of doing things in the evenig, I will try my best. Our goals and dreams are to retire some day and we are both working and saving towards those goals. I just hope I make it there. I am trying to stay positive as I was before injury but it is a major challenge. I think the warm weather will help.

Only you can know if a therapist is right for you but I would give this one another chance. I know it can be uncomfortable to talk seriously about sex. But this is a big thing.

And it's not just intercourse. People need human touch. So sitting together on the couch, even napping together. Snuggling in bed. Having meals together. Go for a ride to nowhere. Or go out for ice cream or coffee.

Give him another chance. I would find it positive that he did not drag out many weeks before he asked you the tough questions. He needs to know what is going on so he can give you some homework...wink wink.

I can completely understand where you are coming from. Before I started getting sick and in the early stages when things were still tolerable and I hadn't been properly diagnosed yet, I was extremely active, on the go, had just returned to school the year before. I always had a camera in my hand and I was happy. Now, I am lucky if I can sit in the car long enough for the 15 min ride to the dr without screaming, or make it from my room to the patio w/out tears, it may be a decent day.

I have had to reteach myself so many things due to the pain. One of the first things....there is no more list!! Even with taking breaks, Ive learned not to push myself to take on more than what is absolutely necessary for that moment. If I am able to do extra, great. If not, I am not going to beat myself up about it. I now look at each thing I am able to do as an accomplishment to be proud of. Something that may seem the easiest thing for another to do, like making a sandwich, is extraordinarily difficult for me. If I am able to do that, and not collapse, I give myself a cheer and pat on the back.

Everyone's abilities and accomplishments are different. Try to not be so hard on yourself. There's a saying, "Put down the bat and pick up a powder-puff". We spend so much time beating ourselves up, we don't take the time to see the small things that are good about ourselves, despite our pain filled new circumstances.

One of the things that helped me out in the beginning, this may sound kinda cheesy but it really works, was a type of affirmation board. I used a small dry erase board, and hard as it was, I wrote 3 positives about myself on it. I put it on my bathroom sink so i'd see it every day, throughout the day. And after you see it so much, you really do start to believe it! And with it in dry erase you change it whenever you want.

I am proud of you for having the courage to seek counseling. Not many people are willing to take that step to talk to someone. It may take time to find the right fit so to speak. that's why I'm just as appalled/surprised as you about being asked about sex, especially in the first session.

If the person knew anything about counseling to begin with, a person's sex life is a touchy subject to begin with. Then you throw in depression and pain on top of it and just to talk about the subject is like trying to hold onto a dozen roses with the thorns still on the stems. What was once beautiful and enjoyable, like the rose, is now as painful and terrorizing as the thorn filled stem. I get it completely! Just the idea of sex makes me cringe in pain, not stress relief like others believe.

If you truly are in pain, sex is the furthest thing from your mind!! To people with certain conditions, I'm not sure what yours are, just being touched, not even in a sexual manner is painful not pleasurable. To people like me, us, there is no "stress or pain relief" with sex. And trust me, there are millions of people who have live without it.

As for your wife, be honest with her. Keep the lines of communication open so she is not left in the dark thinking the problem has something to do with her. Maybe you could find an activity or hobby you can share. Rekindle your love for music, read love poems to each other, read a book and discuss it, or even classic black and white films. Just some ideas as I know you said you need to lay down when you get home.

I hope this helps and good luck!

Peace,
Jenna

I would definitely continue to try counseling. It may take trying a few to find the right therapist. It also can be hard to find one who specializes in chronic illness and pain. I had to go through 3 or 4 until I found the right match. I got lucky in that not only does she have some other pain clients, she is a CPer as well, so she can relate.

It's very normal what you are going through. Our whole lives have changed of course we are going to be irritable and grouchy. When I am hurting I tend to be the kind of person who goes in a corner and licks her wounds, detaches. I am now getting a divorce because my soon to be ex cannot deal with the changes we have had to make. So if I would offer any advice it is prioritize your marriage and talk about your feelings, both of you. Try and do things for her, especially if she helps you out a lot in regards to your pain and fatigue. My main issue is an autoimmune disease and crippling fatigues goes along with it. Brushing my teeth can be too difficult.

That you are aware of how you are behaving and seeking counseling is wonderful. You have already done the tough part. You are on the right road, keep going in that direction LOL!!

Amex-

I think it's impossible to live with constant pain and NOT have it change you. There's nothing that chronic pain doesn't effect; relationships, work, & self-perception are all altered when you start living with pain 24/7. It's hard to accept that pain is the new "normal," and there's a very real grieving process as you realize that pain is permanent. You mention you've been feeling angry. That's a normal part of the grief process: Denial, Anger, Bargaining, Depression, Acceptance. Sometimes trying to prevent yourself from feeling these emotions actually makes them stick around longer. It's just important to understand what those emotions are directed toward (pain) so that they don't interfere with other parts of your life.

For me, a big part of getting out of the depression/anger stage was figuring out ways to make adaptions in my life to accommodate the pain, like getting a shower stool, a cane, etc. Anything that can save you energy and pain. For a long time I saw this as "giving in," but have come to realize that it's just being empowered in my life. I've also worked on adjusting my expectations to ones that are more realistic for the high-pain life I lead now; when my happiness was contingent on having lower pain, life was constantly miserable. Now I seek out things of beauty or joy to passively consume and accept it for what it is, whether or not I'm physically miserable at the moment.

Sorry that you're having trouble. Hope that the next pain psychologist clicks better with you!

Best,
Megan

Hi Amex, I'm sorry your in so much pain. You've been given lots of good advice in the other posts. I really believe in what MeganElaine said it is a grieving process. We grieve for who we used to be and all we were able to do.

I think it's wonderful your going to go to counseling I really hope it helps. If I may ask what is your pain from, have you seen any specialists lately to reevaluate your condition & possibly have your meds changed. I understand if your not comfortable answering these questions, but knowing it would help many of us to possibly help you more. I understand the anger & the snapping it's hard to keep it under control. My husband used to think I was yelling all the time as I would talk in a louder voice I explained to him I'm just venting I told him I really have no one else to talk to except on here. I explained to him that I don't need answers or fixes from him I just need to vent. Once I did this it helped a lot. Now he knows when I'm really angry vs venting lol. Keep the lines of communication open. If it's hard to express your feelings to your wife maybe write her a letter...just a thought. Sending up prayers for healing, comfort & peace of mind.

Hugs & God Bless
Lisa

Im sorry your feeling so bad too. I was the same as you before my surgery, get up, hobble to work, spend the day in agony then get home and go to bed. I soon realised I couldn't continue like that and sure as hell didn't want to so I cut back on my hours. I know thats not possible for some people and it was hard bringing in less money but it helped my pain levels and meant I could sometimes get out on the weekend like a normal person. I've been living with CP for 7 yrs now and I still have days where I feel like screaming and want my old life back but that gets easier with time. I now think that its only natural to get irritable and upset, this is bloody hard way to live! I hope you find a doc you feel comfortable with, some of them are able to help with coping skills or can help you feel less depressed about the changes in your life. I hope things start improving for you soon, take care.

Hi hun,

I am so sorry you are struggling this way. All I can do is lend you advice based on what happened in my life. When I reached a similar point as you my husband and I began discussing what was really important. We decided my quality of life was better than living the way I had been even if it meant sacrifices long before I received diagnoses that would change my life forever.

In the first part of 2012 I was working full time as a RN in trauma/ ER and then my pain along with debilitating headaches , spine pain, and nausea set in. It became impossible for me to stand on my feet for 12 hours and I would go home and cry. I did not realize at the time that I had a serious illness and life threatening pressures in my brain.

We decided after getting one diagnosis to apply for disability. I didn't want to but I was approved quickly because of my illness. I want you to know it was the best decision we ever made. It was not taken lightly because I was only 34 years old at the time. However, because one of my illnesses is considered terminal and not curable it was for the best. Now, I can be home, fight the pain, and spend more time with my children and husband. Now they get the best part of me because my job isn't sucking the life out of me and making me sicker. I am not constantly doing something that makes my pain worse so it is bearable most of the time instead of excruciating. Now I have had to find other things to do but it was worth it to my family even taking a pay cut because we decided quality of life was better than earning big $$$$.

As to the doctor's question of your sex life. I think it is a question that should be reserved for meeting 3 or 4. I am with you in that it seems cold and inappropriate to discuss on the first meeting before establishing proper rapport with you as a patient.

I am happy to report that my family life is much better even with the adversity of dealing with daily pain and medical issues. I am happier....even though I thought I could never give up working.....life now with my children and husband is so much better that I am home. When I worked 60 hours a week I was never home to spend much time with them. Now, they get the best part of me....not the sleepy irritable pain in the rear end me but the nice side.. And, I still contribute. :).

I would say talk things over with your wife and if it is something you qualify to do then just do it!! There are many other things you can do and your health/pain will improve immensely when you take out what is irritating to you. I know sacrifices will have to be made and it is not for everyone but it became my only viable option as my health deteriorated and now that I have accepted it I am ok. My family is happier overall.

Sending you well wishes and a hug ((((((((( ))))))))))))

In the end hun...I never heard anyone say they wish they worked more...only that they spent more quality time with their family:)

Pain and being ill has also changed me. I am much more grumpy than I used to be. Sometimes I turn into a monster at the drop of a hat. I throw stuff, break things, sometimes I say mean things to family members. I just want to lash out on everyone. You have every right to feel this way. You are grieving for the loss of your former life and living in the ruins of what has been left behind. We just need to find more positive outlets for our stress. I myself couldn't even imagine having a girlfriend in this condition. I can barely keep up with caring for my elderly cat let alone a young woman. I don't even think about having intimacy ever again unless my pain levels go down. Heck, I wouldn't even be able to do more than two positions. These are all challenges that can cause a lot of anger and frustration. Please hang in there and continue to seek help. You will find a good therapist in time! I hope you are feeling better today!

Hell all:

Thanks so much for the kind replies. Many good points. To address a few. Basically I was admitting I am a lousy person and need to be more positive and active. My wife has been great and not gotten much in return. That will only last for so long right?
So I am seeking counseling for my condition. The first guy is done. The sex talk put me off. Like one said, maybe session 3 or 4. Least of my problems anyway. I meet with a new lady in April. They are both Pain Psychologists. Will need to write down what I am trying to get out of things.
I am in the Angry stage right now for sure but we seem to flop back and forth between stages.
Someone asked my condition. I suffered a Subarachnoid Hemorrahge of the brain two and a half years ago. 50% of people with this die in the first 24 hours. 35% are permanently disabled and 15% are partially disabled. I am partially diabled. Am I happy to be alive? yep. Is my quality of life good? Not at all. I suffer from sever head pain (headache would not even cut it) and severe leg and feet pain. Today legs feel like beat by baseball bat. Not to mention horrible fatigue. I know others are much worse off but this is my cross to bear.
The pain in my head is so severe it needs opiates to control. I've tried everything else. They just changed my pain med (see Percocet Actavis thread) which is now not working well at all. That is part of my problem.
Last nite I took my wife out to dinner after work. got home at 7Pm and a 12 hour day. She went shopping and I fell asleep. I was woken up becasue I had to go to the bathroom and when I woke up I felt very weird. Like my heart was spasming. Weak and dizzy. Felt better after about 20 minutes. My point is I am pushing it and I am just gonna keel over soon. I'm giving my job 3-6 more months and then look at disability.
Thanks to all for listening.

David

Yup it sure does change you. Try not to beat yourself up ( not saying you do that- I do sometimes.) Its not your "fault." Its not like you went outta your way to feel awful...

I also finally learned. DO NOT compare. Just because someone says that they can do this or that... I have come across too many people that think they are "Captain pain patient" and can do XYZ - why can't YOU do the same xyz....? We can't compare pain levels and what we *can do* because we aren't in the same EXACT body- feeling the same exact thing. Its like two people that have lost a leg. One has the advantage of a comfortable, lightweight, prosthetic leg that fits the person perfectly. The other; prosthetic is uncomfortable, heavy and rubs the skin raw when worn. Would we ask WHY... isn't he/she walking as much as the person that clearly has that kind of advantage ( HUGE advantage??)
I learned that the differences between people are so varied - its pointless to compare - ANYTHING - I have come across some CP 'ers think they are better at "Chronic Pain Life" because of XYZ... whats best and what everyone should "do." Well patient A is in less pain...IF they were in the same body as patient B --- its impossible for them do do any different.
Again, not saying that you compare-- its what I did.
Every day I thank my lucky stars that I know the absolute truth. I ignore the nonsense... LOL they act like they are better than others... they aren't. I certainly don't have all the answers but I DO know... NOT to judge another that has CP. They really should know better.

Oh yeah... CFS ... have you had any extensive blood work done? I found out that I was Anemic (severe) Low Thyroid and my Adrenals were shot to heck. I can't think of the others that contribute to fatigue off the top of my head but you would be surprised at how much these problems contribute to FATIGUE> I had to go to a CFS specialist because its like pulling teeth to get a primary doc to order a complete blood work up- and know how to read and treat the problems...
amex -- take care and keep posting... we are here.

I haven't been able to go back to work for two yeas now and some people on other forums claim they are in worse pain than me and they go to work every day without pain meds. They call me weak for taking pain meds and filing for disability. Well, I tell them that if they're pain isn't bad enough to prevent them from working, then they aren't in as much pain as I am. When the pain is so bad you can't barely use one limb f your body, how can you tough it out and work when the body part just does not work. Some people are just clueless!

I'm so very sorry you are in so much pain. I do not suffer from the same condition that causes you pain so, unfortunately, I cannot provide my experience there but I do have experience with CP and know how soul-crushing and frustrating it can be. I went from being an athlete to...nearly a "couch potato." It has taken me several years to even somewhat accept where I'm at. Some days I am "okay with it" and other days I think about not doing it anymore. Support has gotten me through some rough times...here on this forum and the support of friends and family. This has also taken a toll on my relationship.

I agree it's never a good idea to compare pain. We just have no clue. I have people IRL who claim they have got to be in worse pain than me because of x,y,z but it's just never an idea to "go there." Just because someone can still work doesn't mean they do not suffer every single day. That's just my thoughts there.

It's hard to say when acceptance comes but I'd like to hope it comes for everyone at some point.

Hang in there and I'm sending you warm and pain-relieving (((HUGS)))!

~Michelle

Welcome to the CP group. I'm sorry you're in such life altering pain. I totally understand. I hope to see you here a lot. DS and all the good people here has helped me learn to cope with this disabling pain I have. Let us help you too.

Healing hugs,
Marci