It’s funny how the Universe has a way of pulling the rug out from under your feet.
I haven’t written much because as I think I’ve written before, my goal is to get through the day at work. Whatever other activities i can get from the evening, great. But usually, it’s just come home and hang out and then go to bed. Not a very exciting life. I haven’t even had the urge to write. But I’m trying to get back into that habit.
I’ve tried multiple times to say “I’m not going to let this thing rule my life. I’m going to take back my life and do what I enjoy.” Sometimes it’s worked as long as I can endure the pain and sometimes it just doesn’t work….or it backfires later.
And I guess the other thing I have to do is not get excited when things seem to be going well. It doesn’t last and I’m not sure why. This past Tuesday I thought things were going to be different – I actually made it through work without the ever present TENS unit (that has actually seemed to make it worse lately) and didn’t have as much allodynia as usual. The 4 episodes I had at work were manageable and short lived. So I was a very, very happy camper.
But, alas, Wednesday was the day from Hell. I went to work very early (0400) for several reasons and the office was hot. That didn’t start things too well but it went down hill from there. Finally at about 0900 I couldn’t take the pain any more and although I could have taken pain medicine there, I thought the better part of valor was to just come home – trying to take care of myself – maybe a little late though. I slept all day and all night – waking up to eat lunch and dinner only.
The rest of the week has been bad too. Not so bad I needed pain meds fortunately (and I am very grateful for small things) but bad enough that I’ve needed the TENS and the ice again (I had gone almost a week without needing the ice) with tenderness on my skin again.
Up and down, up and down….will this ever go away? Discouragement, despair, disappointment. What more can I say. I am really down today.
This will be short. I was so happy I thought things were improving and then last night happened. I had 3 nights where I was able to sleep without taking pain medications. It was awesome.
Last night I was able to get to sleep without the pain meds so when I woke up a few hours later I was happy – I was on night four!!!! But as usual, I had to get up and then because of my restless legs I went out to the other computer (the stand up desk) like I do most nights and played Solitaire for about 15 minutes (a habit to combat my restless leg syndrome and usually it works just fine).
Last night, however, after I was done and went back to bed, the pain was flaring and I couldn’t get it gone either with my “ARC” device which usually helps a lot or with my TENS unit. So I had to get up and take my Tramadol. I was so disappointed but knew I needed sleep – I didn’t get that much anyway because it was late by the time it worked. I debated taking a day off today to sleep but there’s too much to do.
I think (but hope I’m wrong) that the Universe was telling me to get real because all day long yesterday I was contemplating doing ARFTA (A Race For The Ages) in September even if I couldn’t complete the full 100 miles. It’s a loop course so I could wear my “homeless” shirts but now I’m wondering again. Damn.
I have learned this week that getting cocky doesn’t pay. I’m sure this is an important life lesson.
I was starting to have less episodes of pain and one morning was really feeling as if there was hope this thing would go away soon. Next thing I know I’m at work and “BANG!” – here it comes again. And it was fierce that day too. Nuts. I even had to take a tramadol during the day and that is something I try desperately to avoid (unless I’m going on a plane). Crap.
Then for the last two nights I have been able to sleep (and sleep well) without taking any pain medications. I was ecstatic Friday night when that happened but when it happened two nights in a row, it was as if I had won the lottery. So, why did I title this “confusion” – because during the day yesterday after a great night the night before, the pain was pretty bad. I don’t understand how (or why) that happens. It’s not really random but it’s very strange since previously there was no way I could even get into bed and lie down without that “branding iron” pain hitting.
As I said in the title, I’m not complaining – complaining doesn’t do any good anyway – but I am certainly confused.
I have up’d my Gabapentin and now I’m up to 1600 mg a day (still with plenty of room to work but I have to go slow to work with the side effects – and usually I have to start the increase on the weekend so if there are problems with it, it will be ok).
Keep your fingers crossed please. I have declared to my body that SIX MONTHS will be enough! At the six month mark, I will be all better! Two weeks from now! So, we’ll see.
You would think that with as much as I “preach” about the power of your words and that you should reframe what you say into positive ways, that I’d have been able to see this painful condition coming.
I probably have said this phrase way too many times and thought it even more – “he/she/it’s getting on my nerves”. After all it’s just an expression, right? NOT! Whatever you say, your subconscious hears and believes and takes appropriate action.
So what? Well the “what” is that Shingles (the chickenpox virus) hangs out in your body (after you get it as a child) but more specifically it lives in the nerve roots off your spinal cord. Yes, that’s right, I said “NERVE” roots – as in “gets on your nerves” – catch that.
It took me a few months of this pain to put two and two together but you can bet this is a phrase I’m very aware of and avoid like the plague now. And I am much more acutely aware of what I say or think.
Take this advice to heart. If you constantly say “I’m sick of something” – then examine how often you get sick. Do you say “I’m sick and tired” – then look at what your energy level has been.
Examine what you think and say (not just the out loud part but the things you are thinking too) and modify whatever you need to.
Meet Duke! He’s absolutely gorgeous and is 8 years old. He has had a great home so there’s none of the issues you might expect with a rescue dog. I met him and fell in love. But when I got home, I began to question myself and my abilities at this time.
Between the depression of losing my best friend and the continual pain, I don’t feel very responsible. I am not sure I could really take care of him. I do know that he would certainly take over and help eliminate the loneliness here. But I want to do good by him and I just continually doubt myself.
What if I have a bad day with pain and can’t take him out for a walk for pleasure (I have a doggie door so he will be able to go out whenever he wants to but I know he’ll want to go for walks too and I want to be able to walk with him – not sure what will happen with my pain but willing to try.
I have to clean up the house making it doggie proof and that’s an ominous task right now. I’m not sure at all. I have to see what my heart and mind come up with. I’ll keep you posted.
It’s been almost 5 months since this all began. Even though I am very tired of it and ready for it to be over so I could get on with my life, I know that’s not up to me.
Last evening was something else again. I’m not sure I’ve experienced that much pain since this began before I had any medication.
I was doing my normal evening thing – sitting in my recliner with my cut out shirt and ice on my back. Work had been longer than usual and the rubbing of my shirt was bothersome all day even though I used my “tens” pretty much all day. But once I sat down, things were ok(ish). But about 45 minutes after I took the tramadol (I usually have to take it 2 hours before I’m ready to go to bed – it takes that long to work), the sharp pain started. I used pressure in the chair and that didn’t work (usually it will). So I eventually got up off the chair and went to my other computer (stand up) and man, that was probably a mistake. The “Cattle Branding” as I call it kept coming about every 3o seconds – feeling like I was either being branded or stabbed with the knife end stuck deep and twisted around. It was the worst I’ve had since this whole thing started (guess I said that already – sorry). I was actually screaming – since I live alone I don’t have to worry about someone in the house calling the cops. I do have to worry about neighbors hearing me since I think I was that loud.
It kept coming and coming so I gave in and took an extra tramadol. Am I a drug addict or drug dependent? Not yet and I hope that doesn’t happen.
As I write this, the pain has returned – I hope I can make it through the day.
What I meant by the subtitle of this post is that you all don’t see what it’s like to be inside this pain. To go through the day having to watch how you move, whether you can sit or not, what you’re wearing and whether it will rub on your back and start the “firing’ or not, etc. The pain is exhausting and debilitating and there’s not a damn thing you can do except take more medications. Please don’t think that I’m all better. Believe me, I will let you know when I am. And don’t think “gees, is she ever going to stop complaining” because I try very hard not to complain. My life is nothing right now and it’s a very miserable existence.
Thanks for listening
Because of my post herpetic neuralgia I can’t go to the Vol State run across Tennessee this year. Already one good thing has come from that (I already wrote about it).
Well, indirectly I guess you could say there is more good from my not being able to go. I’ve posted in Facebook about my very good friend who is fighting progression of her breast cancer. This woman is remarkable and I only hope that some day I will have one tenth the courage she has.
Anyway, she is still in the hospital (but at least for now is out of the ICU) and hopefully will eventually be transferred to a rehab unit. Her business partner is almost as phenomenal as my friend is. Her strength is also beyond compare. I just sit here on the sidelines about 1700 miles away. But I am here if anyone wants anything medical clarified or wants my opinion about something (I think they just want to make me feel good since there are plenty of competent medical people there). I want to be available and supportive. Were I to go on the 10 day road trek through Tennessee, I would only have my phone on for a few short minutes twice a day (we’re required to check in twice a day). So, I would not be available to be supportive.
Today it’s hard for me to think of this as a positive thing because the pain has really acted up all day. I’ve had to take pain medicines at work TWICE today – something I’ve never done before. So, I’m not feeling all that great. I try to remember how poorly my friend is and how exhausted her business partner is and my pain is nothing in comparison.
Anyway, that is the latest bit of good I can think has come from this disorder.
I get so very p.o.’d (see I’m trying to be polite). I am trying to act normal and do normal things and then this blasted little nerve pops up and says “ha ha, you think you can enjoy the day and do things like normal people – think again, Terrie”.
I am so happy my car has had almost a complete makeover (from my perspective anyway) – I’ll try to take a picture tomorrow to show you. New bumpers, new headlamps (I had the guy Friday put in a new passenger side one to make them look even), new front end “stuff” (under the car so I have no idea what was done but it sure has made a difference, and then yesterday FOUR NEW tires!!!! It rides like new. So today I started cleaning it out. Not an easy task and one I won’t spend a lot of time on. It’s 12 years old and I’ve used it for my runs and my dogs. So, there is only so much I can do. Tomorrow I’ll work some more on it.
But the pain was bad enough that I had to take a Tramadol darn it. Even with cussing like a drunken sailor, the pain stopped me from bending over and doing things. I am thinking of trying a chiropractor to see if there are any thoracic alignment issues that might, when fixed, help the nerve heal some.
Just wanted to tell you I was living up to my Navy reputation!
Happy 4th of July everyone.
This past weekend I tried to get back into normal activities while still paying attention to my body. I knew that some of what I was going to do was probably going to cause pain (because it had before). But, I know I have to start somewhere.
So, Saturday I walked (not ready to even start running yet – especially after Memorial Day weekend’s experience) 4.5 to 5 miles. Then I went grocery shopping and most importantly I got my car washed (I love my car and have realized it even more since I got it back from the shop). Then I piddled around the house and straightened things up a bit – not as much as I should have but I did more in that one day than I have since the beginning of Feb.
Sunday, I walked 4.5 miles and had some episodes of “cattle branding” but stopped until they were gone and then continued on, determined not to let this thing keep me from doing what I love. Then I went to Walmart. That was a problem since I wore my shirt without any protection (lifting it up off the skin). That was a mistake although I have worn that shirt before without protection and without so much problem. Yesterday it was horribly painful all throughout the trip. However, always trying to look at the bright side – having that much pain kept me from buying more…ha ha. How cool is that. I was also able to bite my tongue (not literally) and get through the pain.
I also cooked for the first time in a while. And I got my treadmill out (my neighbor did) and walked on it while I was cooking. It felt great.
It was a wonderful weekend trying to get back to some semblance of normal.
I know that the nerve has not healed yet (because it keeps firing). However, there are days that are “good” and I feel great hope and happiness. These are days like early Friday when it was the first time I actually didn’t dread my morning shower – the running water did not cause the usual excruciating pain and then putting on my clothes did not burn for as long. So there was hope. I was thinking that I was getting to the right dose of Gabapentin.
I went to work happy as a lamb. But after about 2 hours, the pain came back but then it died down again. However, about noon, it was firing continuously. I was not only in pain but PO’d too. I get angry at myself when I have these electrical shocks (cattle branding). Anyway, I had to resort to taking a Tramadol and that bothers me too. The last thing I want is to become addicted to pain medications.
Some days I only have the allodynia (the electrical shocks and burning) when something rubs the area or even light wind against it) and those days are sort of tolerable because I have messed with my clothing so that I can limit the rubbing. In fact, when I go out for a walk in my neighborhood, I think people who see me in my t-shirt must think I’m a derelict but nothing is on my back so that’s great.
But then there’s other days where I have both the allodynia and the spontaneous pain. It’s the spontaneous pain that really gets me discouraged. It comes randomly and then it continues to fire, fire, fire. I actually moan and groan and curse at work when I’m alone in my office. When my office mate is there, I have to control myself. At home I actually yell out when it gets bad.
I try not to lose hope. I am trying to act more normally and do things other than going to work. For the first 4 months all I could do was go to work and make it through the day then come home and crash. Now I’m starting to write again and trying to do other things.
A good friend at work told me something about the narcotics. She said she was told when she was pending back surgery that “you do what you need to in order to make it through the day”. I am trying to believe in that and know that I won’t allow myself to get addicted. I try to do everything I can to not take the medications but sometimes I just have to give in and take them.
Back to the ferris wheel of postherpetic neuralgia….’