Day In The Life...

I live in Florida and we just had a hurricane go through, Irma. Luckily I am in the panhandle so all we got was a tropical storm in our area. Some wind, some rain, and a dent in the van where a branch fell on it from the tree. Weather definitely effects chronic pain conditions and I am no exception to that. For the last couple days I have had lots of muscle spams, sciatica, tingling/numbness, shooting pain, and a higher pain level over all. A bad few days so far.

Since this is Chronic Pain Awareness Month (September) I thought this would be a good day to do one of those "Day in the life..." type posts. I think it will be a good idea to give people information on what it is truly like to have a bad day with a chronic pain condition. This is how it effects me, but I figure it will at least give people a rough idea of how it might be effecting someone in their lives and hopefully it will promote understanding.

So lets start with over night, sleeping. (Sleep? What's that?!? LOL) Due to the increased pain and severe muscle spasms I was not able to try to sleep until 2AM. I had a hard time getting comfortable enough to try and fall asleep because when I shifted position the muscles in my back (just under my shoulder blades all the way down to mid thigh on both legs) tightened up and started to spasm. This causes extremely sharp and intense bolts and waves of pain to shoot through the entire area. When it first starts it is extremely intense and takes my breath away. I then have to mentally remind myself to breathe, slowly and calmly. Somewhere around 3AM or so I dozed off. I woke up a few times due to pain and spasms but managed to go back to sleep until 4:30AM. I've been awake since then (it is now 9AM). I have been alternating between applying heat and ice to the affected areas (alternating; 20 minutes on/20 minutes off/switch to the other/repeat). Neither helps tremendously but when it is like this I'll take what I can get. I am having to shift position every 3 to 5 minutes (instead of my normal 8 to 10 minutes) to try and stave off another episode of spasming. This is not very effective since I still get the spasms and sciatica, it just isn't as intense. I am currently sitting at an 8 on the pain scale of 0 to 10. I took my morning medications at 7AM. Right now I am watching vlogs on youtube.

To get breakfast I had to think of something to eat that would require minimal movement and preparation as standing and walking are very painful for me. With the sciatica going on it is also dangerous as my legs can give out without warning and falling to the floor is not a good thing. I decided to make toast because it required the least amount of standing, bending, and reaching for things.

It is now 11AM and I am still in bed shifting position and alternating heat and ice every 20 minutes. I've also done some very gentle stretching to ease muscle stiffness. I am having to shift between sitting and laying down every 5 to 10 minutes. I can go 10 minutes laying on my right side, but only 5 minutes sitting up. Every 5 minutes sitting up I have to shift around and change which way I am leaning (left, right, forward, back against pillows). My left side is the worst and I can't lay on it at all. This is very annoying shifting around all the time. I'm still at a level 8 on the pain scale but am grateful that it is not getting stronger and am hoping it stays this way (I don't think it will as I have to pick my husband up from work this afternoon). I keep thinking of my mother telling me, as a child, when I was restless "Do you have ants in your pants?" and it makes me giggle.

It is now 6PM. I slept from 11:30AM or so until 2:15PM. Was a restless sleep and I woke up a few times with the muscle spasms. Back to alternating heat and ice. At 4:30 or so I went and picked my husband up from work, which hurt a lot, but it felt nice to get out of the house and into the sunshine. Came home and ate dinner which my daughter had cooked. Now, while alternating heat and ice I am going to do a stitching hangout to chat with friends and stitch for distraction. Sometimes it helps distract from the pain but even if that doesn't happen, it always lifts my mood to be chatting with friends.

It is now 9:47PM and just got off the stitching hangout. Made good progress on my project which can be seen on my stitching blog. I continued to alternate heat and ice during the hangout, shifting positions as needed as well as getting up to walk around and stretch my muscles out. My pain has been pretty steady at an 8 all day, but I am grateful that it didn't go higher or hit a pain crisis (level 10). I really didn't want to be curled up in bed and crying from the pain.

Now I will continue with the heat and ice while I watch some stuff on Youtube or Netflix/Hulu until I am sleepy, then I will try to sleep. I don't know how much sleep I will get but am hoping I get more than a couple hours. Lack of adequate sleep does not do good things for my pain, it also makes it harder to mentally deal with the pain.

That's pretty much my day today. My hope in sharing this is to help people understand what it is like during a bad day. As well as to show that being home a lot due to pain is not the fun, relaxing day off that people think it is.

What NOT to say...

People who live with and suffer from chronic pain and chronic illnesses often hear different statements. Some are intended to be helpful and kind. Others are meant the opposite way, often it seems (to me anyway) that the people that makes such mean comments are almost trying to protect themselves from an illness or pain by distancing themselves from the sufferer they are speaking to.

Below are some videos about things NOT to say to someone who suffers from a chronic illness and/or chronic pain.


This first video is from a young woman in England. She suffers from a great deal of pain every day as a result of damage to her back. Through her YouTube videos I have gotten to know her a little bit and she is a truly warm and wonderful person. Sara, without even knowing it, helped me a great deal in the past 6 months. I have watched and re-watched her videos, especially the ones where she was still a student in college (University). She is a pharmacist, which is what I had been ready to start college for if my back hadn't blown out a month before school started. Her determination to make it through school and still do her best was very inspiring to me. Being someone who lives with extreme low back and pelvic pain I can totally relate to how much pain she was living with, struggling with, and barely making it through each day with. But SHE DID IT! She graduated! I am so very proud of her for doing that because I know how hard that had to be. Anyway here is a video she posted titled "Things to think twice about before saying out loud to someone with chronic illness" 

This second video is by a young lady who suffers from Interstitial Cystitis (IC). This is an extremely painful disease that affects a large number of people, though most (doctors included) have no clue it even exists, or they have very faulty information. Ir causes severe abdominal pain (much of which is centered around the bladder), severe pain with intercourse, frequent urination, and frequent strong urges to need to go to the bathroom. There are other symptoms as well, but the biggest one is PAIN. Lucky for Amy she had a stimulator placed which has helped her a great deal. She has been able to return to college and is hoping to become a Urologist. 

Please, when you are talking to someone who has a chronic illness and/or chronic pain, please think twice about what you will say. Take a moment to put yourself in their shoes and then say things that will be supportive and helpful rather than dismissive, hurtful, and judgemental. None of us ASKED to be sick or in pain, yet here we are and just doing the best we can day by day.

Taking Stock In Attempt To Change

For the last 18 months, and probably longer, my pain has been in control of my life not the other way around. When my pain got worse a few years ago I adapted and still managed to function. When it got worse in April 2011, I could not figure out ways to adapt as nothing seemed to work. As time went on, depression increased, mobility decreased and pain took control. My old methods for dealing with and living despite my pain are no longer effective with this new level of pain and symptoms (no standing/walking more than 5 minutes). So I decided to try and get some help. I can't locate a behavioral therapist who deals with chronic pain in my area, so I ordered some books.

I am currently working through "The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. I already knew that my coping mechanisms are not good and in the case that I've been using dissociation to deal with my pain, they have degenerated into very unhealthy mechanisms. I bought the books back in early February I believe. Since then I've read a few pages in each one (I bought 4), then did what has always worked for me. I allowed my mind to analyze and think about the ideas these books represented.

It is very hard for me to admit that my actions and thoughts are contributing to my pain. It is difficult to admit that I lost some of my ability to manage my pain effectively a while ago, and lost the rest of it in the last 18 months or so. It is hard to admit that I gave up. I wanted so much to believe that I was doing everything I could. That I was trying to function with the pain, but the truth is I gave up. The pain got so much worse, with new symptoms and the inability to stand for more than 5 minutes, no real help from my doctor, and I gave up. Now I am sitting here crying because this is the first time that I have faced head on and admitted clearly that I gave up. Instead of saying something like "yeah I've given in BUT <insert any but here>", the truth is I was kidding myself, there has been no actual "but" for a long time. I do occasionally fight back and try to do things like some laundry or housework or cooking, which increase my pain and when that happens, I give up again for a while before trying again. But those attempts are few and far between.

Why am I sharing something that to me is emotionally painful, humiliating, terrifying, and so intensely personal? I'm not really sure what all my reasons are, but the one that comes to mind immediately upon asking myself that question is that I want others who may be in my position to see they are not alone. In addition I am hoping that by sharing the truth about my own mental, emotional, and physical ability to fight/live with my pain, that those who are in the same boat as me, can see that there is still hope. I have reached a point where I am sick of this. I want my life back. The only way to achieve that is to work at it and learn new ways of coping, since obviously my old ways aren't working. Sitting around waiting for something outside of myself to give me back my life obviously doesn't work. So I guess it's time to get off my ass again.

In the book I mentioned above there are lots of exercises. These are designed to help you see where you are now in dealing with your pain. What is working well, what is not working at all, and what could use some improvement to work better. The beginning of the book, like any other self-help book or even therapy with a therapist, starts out with taking stock of where you are right now. Identifying what works, what doesn't etc. Also identifying your readiness to change, your motivations. I understand all of this having gone through it before with and without a therapist when I was dealing with healing after abuse. I've done these things in conjunction with a therapist in order to help my daughter heal from abuse. Many of these first steps are the same.

What surprised me was the fear reaction. Having the fear of facing old abuses in your past, acknowledging the damage it has done and the negative effects it has on your present all made sense to me. Who wants to face such painful memories, accept them, work through them and all that. The fear made sense.

But now, accepting this fear of dealing with my own pain means accepting that I have failed. For some reason I am finding it much harder to accept that I am afraid of trying anything. My biggest fear is increased pain and decreased mobility, followed by fear of failure. For some reason this isn't making sense to me. I keep asking myself "Why am I afraid of my own pain?, heck I've lived with it for 30 years (varying over that time from mild, to bad to worse to now [horrible]). I know I will live with pain the rest of my life. Why am I afraid? Is it really that simple as fear of change?". It isn't making sense to me why I am so scared.

And with so very little for me to look at as things I can do well (in the sense of a job or productive activities), the idea of having failed in dealing with my chronic pain in my daily life is terrifying and painful. I am feeling very vulnerable and very sacred to look at all these things, to see exactly where I have failed. What if admitting all this makes people around me decide I'm no good? What if it makes me decide I'm no good (seeing myself as no good is worse to me than others having that opinion)? What if I fail at trying to change? Heck since I've already failed, what are the chances I can succeed now? I've tried to fight over the past 18 months, but failed time and time again.

But I don't have a choice, I have to try. So I will take my anger and fear and try to harness it as a motivation to get the changes I want. To get my life back.

One of the exercises was to draw a pie chart that represents how I view the way my pain problems affect my life. Included are the pain issues themselves, then social issues and psychological issues. Here is a picture of the pie chart I drew. It clearly shows that the pain issues have overtaken everything else in my own mind; I have allowed the pain issues to overshadow everything, to take over. This ticked me off and scared me and I want to change it. So here's hoping I can do that. I will try simply because I want a life, my life, back.

The book then goes over the Stages Of Change and I am in the "Open to thinking about change, but...". I know Doc's can't fix me. I know that I will have pain for the rest of my life. I know that what I've been doing isn't working. I know my fear of trying to change and failing, isn't going to help. I want to change this pie chart, I want my life back. So now comes working through the fear and getting rid of it so I can take the steps necessary to manage my pain better.

Knowing how I tend to work, when it comes to having to fix things mentally/emotionally/behaviorally, I will probably revisit these topics a few times. Hopefully on this blog so my journey can help others, but it is possible that not all of it will show up here, depending on how personal it is or if the thoughts etc affect someone else, not just me. So most likely I will have to revisit this topic of my fears until I understand them well enough that I can counteract them with more reality based thinking.

Here's hoping that I can get my life back.

Killing Myself

Ohman I am in so much pain right now and I don't see an end in sight.

I spent yesterday, a couple hours anyway, packing up the remainders after an estate sale. said remainders were donated to my yard sale. The yard sale is to benefit my son's best friend Matt who was badly burned (http://hopeformatt.blogspot.com) in the hopes of raising money to help with the medical bills which currently stand at $80,000 and this is just the beginning.

We had a bunch of stuff that was donated earlier sitting in our den. We had to sort it and repack it in boxes that would close. This took us 4 hours to do. Box of  Christmas stuff, craft stuff, clothes, shoes, toys etc. We have loads of stuff for the yard sale, I just hope it all sells (or at least most of it).

Tomorrow I have to hopefully finish packing the estate sale house up. I don't know where I'm going to get the strength to do it. Today was supposed to be a rest day in preparation for tomorrow. With a broken pelvis, nerve damage, and a bad lower back I have to be careful and space out doing things like this. Instead DH wanted to sort the stuff in the den. I realize he didn't think it would be so much work, but I knew it would be. I don't blame him, nor am I upset with him because I knew it needed to be done. I also knew that doing this would hurt me quite a bit. But now I am worried that I won't be able to finish packing up that house tomorrow  and after how nasty the lady was about it yesterday, I want to get it all done tomorrow and not have to come back again.

I'm stuck in bed and probably will be most of the week after finishing tomorrow, if I can. 

Help Please

I am asking for prayers, thoughts, well wishes, reiki (whatever it is you are comfortable doing) for my son Kyle's best friend Matt.

Please spread the word as well. Matt was severely burned. All the burns are either bad 2nd degree to 3rd degree burns with the worst being on his hands and face (3rd degree; entire right side of his face). His neck, chest, both arms and hands were also badly burned. He is looking at a year worth of doctor appointments, surgeries, procedures etc. to treat these burns.

I am doing fund raising in the hopes of helping the family through this time so they can focus on helping Matt rather than worrying about gas money, medical bills etc.

Please visit http://hopeformatt.blogspot.com for more information on how you can help Matt and his family!

Please post a link to his blog anywhere you want to so the word spreads!

If you want to send direct messages to Matt you can post a comment on the blog, email him at  mattshope11@gmail.com or contact me and I can provide a snail mail address for cards or letters.

Thank you all for your well wishes! I have passed them all on to Matt and his family. Matt says thank you as do his parents.

Please help!

A young mom named Anissa has had a stroke. Please send her good wishes, say a prayer or whatever it is you personally do to wish someone well!

You can donate via PayPal for her family by clicking here.

Or check out http://aiminglow.com/2009/11/hope-for-anissa/ for other ways to assist the family if you wish to.

You can learn more at Anissa's first blog: http://www.hope4peyton.org/