I have spent the last few weeks in a complete funk. I felt like shit. My flare kept me down. I had a difficult time overcoming my depression. Life was not fun.
Chronic pain is an interesting condition to live with… it’s like living on this ultimate roller coaster. Your life is literally going in these huge swings of ups and downs depending on the levels of pain you are in. YOU have to constantly be in control of your emotions. Everyone around you depends on YOU to constantly be in control of your emotions, your pain medication, your antidepressants (if you use them), your diet, your exercise regime, your sleep hygiene, basically every minute and second of your life. Let’s be real… this is just unrealistic. I know this… my chronic pain friends out there know this… but 99.9% of the people who live normal lives will never understand this. It’s incomprehensible to get this. Although they (folks without chronic pain) deal with it, they want a consistent “YOU”, not this sometimes emotional, sometimes irrational/ erratic/ sensitive person. Sure we live in the straight areas of the roller coaster and we appreciate those times, but we all know that there are going to be the ups and downs.
Here’s the reality. The reality is, no one is perfect here. No one. Not us – the chronic pain people. Not them – the support people. We all have to understand this. So, there really should not be an “US” and “THEM” in theory, but in reality once again I challenge everyone to think about this difference in groups. How do we bridge this gap? Is there a need to bridge the gap?
How do we better educate our family and friends around us? I still find it very difficult to talk about all the conditions I have. I don’t want people to feel sorry for me, I don’t want to get “that” look. I realize I need to be okay with how people react, their reactions are normal. I realize it takes time for people to accept and be okay with change. I want to educate people so they can understand the conditions that I have. I want people to understand that I am in pain everyday. Some days are better than others, but even though I look good on the outside (okay people I am not trying to say “I look GOOD!”, I’m saying I look healthy good), the pain I feel is real.
So, let me get back on track (good pun, huh? Sometimes I am pretty good! lol!)… I was on the down side of this roller coaster and I was falling fast. I had no sight of things getting better and I really felt like the pain was going to keep getting worse, my stomach has been upset, I’ve been using my cane, my depression has been bad… that dark cave was getting smaller and smaller. I was trying to find ways to get out, but I didn’t feel like I had options.
I have been praying and I pushed myself to spend the 4th with friends and family and you know what? That dark cave opened up and the light shined through. I allowed myself to just relax and my husband and my kids took care of me and I enjoyed time with old friends and family. I had a fabulous time! I am not a social bunny (understatement of the decade). I generally do not like to be around a lot of people, but I had a really nice time. When my pain got to be too much, I looked at my husband and he knew exactly what I needed and we said our g’bye’s. We came back to the house and rested for a bit and while I rested my husband took Tani out for a run and then we all went next door for the annual fireworks and then back home for the night. All in all a great day to bring some well needed light into my life!
Sometimes, it just takes the simple things in life. Some friends to light up your life. Say “YES” to the invitations to go out, even if you stay for an hour. You might be surprised by the smile on your face when you leave. Wear something easy and don’t be hard on yourself about having to look perfect, people want to see YOU! I have missed out on many opportunities and I am sorry for that. I can only hope to work harder at this.
Also, let’s find ways to better educate those around us, and remember we aren’t all perfect… it’s just not possible. Let’s find a way to bridge this gap. The responsibility is on us, we are the ones with the medical conditions and we have the knowledge. Let’s find better ways to share in a user-friendly way. If you have ideas, please share with me.
Thanks so much for stopping by! Stay cool!
Tamiko
my foggy brain 
This was such a great post. I’m at home with an odd new pain and exhaustion that appeared yesterday morning for no apparent reason, and I’m having a hard time resting and getting comfortable. I feel irritable, as my most recent blog post explains.
I do understand what you mean about the socializing. I often find the pleasant distractions to help me forget how sick I am, even if it’s for a little while. Although I know there are times when staying home is the right thing to do, on my better days, I am always glad to have taken a chance on the outing.
Thank you for putting things into words that are hard to describe to others. This is a post I can share with others to show how I’m feeling.
If we aren’t nuts when we start with the pain, we surely flirt with nutsdome by the time the doubters get done tramping on our spirits eh? I started my blog because I NEEDED to vent what I feel. It sucks that I have to vent at all but since I do, I do it with honesty in hopes if I speak, I’ll be better prepared to deal with it. Gentle hugs and thank you for having me. Tazzy
Tazzy –
I love your blog! Thank you so much for stopping by and leaving your comment! I am adding your blog to my Favorite Blogs tab… I hope you don’t mind. I’ll be keeping up with you as often as I can…
Hugs right back at ya!
Tamiko
Hello,
My name is David Keating and I am a student at the University of Arizona. I am working with Dr. Steve Rains, who is an Assistant Professor in the Department of Communication. We are conducting a study about blogging and health and would greatly appreciate it if you would complete our survey. We found your blog by conducting a general search for blogs about health. We would like to know more about your experience blogging.
Our survey takes about 20 minutes to complete. To participate, you must be (a) 18 years of age or older and (b) have made a blog entry in the past 30 days.
If you meet these requirements and would like to participate, please click the link below. The study will be conducted online and the link will take you to the first webpage of the survey.
http://www.surveygizmo.com/s/283578/blogging
[Note: You may copy and paste the address directly into your web browser (i.e., Internet Explorer) to access the study.]
If you have any questions or concerns about the study, you may contact Dr. Rains at: srains@email.arizona.edu
Thanks for your consideration!
Best Regards,
David Keating
**************************
David Keating
Department of Communication
University of Arizona
**************************
Hi David –
Thank you for your comment, I completed the survey.
Best regards,
Tamiko
I tried 8 different anti-depressants until I found Wellbutrin. I have been on it for several years. Going off it, or switching to generic, sent me into a deeper depression so I know it’s working. Recently my doctor tried to another medication feeling the Wellbutrin wasn’t enough, but after 3 attempts I just couldn’t handle the side effects.
Trying to get counselling is ridiculous. I had a counsellor in what we call a family of doctors. When my doctor moved out of that area I lost my counsellor. Apparently there is only 1 in her new area and a long waiting list. I’ve been to Catholic Family Services but they want money. I’ve been to a psychiatrist who made it quite clear he can’t see me on a regular basis.
I am a member of a writing group in my town. I have made some good friends in this group and socialize with them outside the group. I am also a church goer and am involved in the church. I’ve been wanting to call my priest to talk to himj but I’m not sure I’m comfortable with that.
The biggest hurdle is maintaining a positive attitude. Attitude means everything and I’ve always had a bad one. LOL!
Hi Patricia –
I apologize for taking so long to get back to you… Do you have a blog? Writing this has helped me tremendously…
I understand your feelings about counseling, I know how frustrating it can be. I have had many frustrating bouts with counseling, sometimes it works and sometimes it doesn’t. What I do know is you need to find SOMETHING that will help relieve some of that stress on you.
Try setting up a blog, it’s free and you don’t have to be positive. Actually, you can say whatever you want and you seem to be someone that can turn the negative into something funny. :)
If you are in a writing group, you must have some great stuff to put in a blog! If you already have one, send me the URL so I can check it out.
Other things to consider? Read this blog… she really makes me laugh… don’t read it if you are easily offended though:
http://thebloggess.com/
I hope you are having a better day… this has been a sucky couple of weeks for me, but I can say on the 4th I had one good day. :) Nothing like constant pain with chronic depression to follow it up… oh and acid reflux… FUN!! :)
Dear Tamiko, again I apologize for taking up space here before you had a chance to respond. I just happened to be here and Patricia sounds so very sad.
An excellent blog, Tamiko. That control thing–you hit that right on. It seems we must constantly be in control of the persona we present. We have learned that it is not okay to not be okay. People don’t really want to know how you really are. They don’t listen after they ask the question. We learn to say “I’m fine/okay/hanging in there.” And you are so right about the expectations. The whole thing is exhausting!
And, you also make a point about sometimes taking a chance and putting ourselves out there. Most of the time I would rather just stay home. But, there is a certain group of friends that push me (in a nice way!) to go out with them. Now we are not talking about “out” out. We are talking about simply getting together at one of their houses and spending some time together. Totally non-threatening, kick off your shoes kind of get together. And you can leave whenever you feel you need to. Often I don’t even want to do that, but I will push myself. And, I am always glad I did.
I don’t like to talk about all of the “conditions” either, but you are right, we need to find a way. Thank you for this post, Tamiko. Thought provoking.
Fondly,
me,
CJ
Thanks for the wonderful comments CJ! I think that it’s hard for people to deal with knowing we are in pain and how to deal with it. I’m still learning myself… by asking us how we are, they are doing what they think is right — but I agree, they don’t quite know what to do when we answer. I don’t quite know how to answer. I don’t want to tell the truth, because I feel guilty if I tell the truth. It’s a very awkward moment everytime. I love that we can get these thoughts out there and get each other to think and push each other to educate…
Let’s keep working it! Thanks again for the comments, it really means a lot to me.
Tamiko
Oh, lord, Patricia. I don’t know what to say. How I ache for you. Please, is there something we, all of us fibro bloggers, can do for you? You are in so much pain. I have been in that pit of despair, but I had my sister (who also has fibro) and my dear daughter to help me thru the very dark, dark places in my head.
I have seen a psychiatrist who worked for over a year to find the right medicine and dosage to help my severe depression. I think that might be your first step, to get help with your emotional health. You must find a doctor who knows fibro and can help you find what will work best for your physical and emotional health.
The pain and the fatigue make it so hard to believe that there is any light. But, there is. It may only come in moments and then hours at first. But you can find it.
I apologize to Tamiko for taking up space in her blog. But I know she will understand. Your comment sounds so full of anguish and utter surrender to this demon fibro I just had to say something.
Please stop back by Tamiko’s blog and visit others, too. You will find extremely supportive people out here who have been or are in the same place you find yourself now. We all care and would like to help. It helps to vent, and bitch, and moan. But you will also find helpful information here, ideas to try and some very kind and supportive people.
Hang in there, Patricia. We all truly do care.
CJ
CJ –
Great advice!
Please… step in anytime! No need to apologize, I love it! :)
Tamiko
After 14 years of this, my husband “forgets” that I have an illness. He doesn’t see my pain and I stopped complaining a long time ago. Even if I do say, “My legs hurt tonight”, I might have well have said, “It’s cloudy outside.”
Everything you described I have been feeling for the last couple of weeks and sometimes forget myself that it isn’t ME, it’s this stupid illness that has taken over. I hate socializing and have learned to say no because family gatherings make me more miserable.
I’m 47 years old, the mother of two teenage daughters, married for almost 13 years… I’m sick of this. Sick of being broke, sick of my husband telling me I need to get a job, sick of feeling crappy.
I’m glad you were able to find a glimmer of sunshine in your gloomy couple of weeks.
Patricia –
I hope you came back and read CJ’s comments. There are so many different ways to find support and I’m so sorry that you are finding it so hard. We are not that far in age, you and I. It is difficult for folks to keep in mind that we are not well. On the outside we don’t have broken bones, we are not disformed, we don’t have bruises or any noticeable changes that appear to make us look sickly. Other than the fact that we look exhausted… people get used to that.
It’s so easy to get into the rut of hating to be around people, I have been there many times. I hope you find your way to “jump in” and find someone you can trust to allow you to truly be “YOU”.
I also suggest you try twitter, there is a lot of support there for you, I can suggest a lot of people for you to follow. You can vent and people will reach out to you and make you feel so much better.
Also… if you are in California and you have access to Kaiser, let me know. They have an awesome chronic pain program and I will tell you how to get access to it.
We are here to help. :)
Let’s start with a <>
Tamiko