I’m not sure if it was from the cold weather, stress or some sort of cosmic retribution, but right after I posted “The Plan, update #8”, the pain set in. Oh the irony. I had literally just finished saying how my pain levels had gotten so much more manageable, blah, blah, blah and BAM! Next thing I know, it feels like a bunch of (evil) little gnomes are hitting the nerves in my left wrist with pickaxes. Seriously, that’s what it felt like. It wasn’t a flat line sort of pain, it was like someone plucking a guitar string over and over again, but with no discernible rhythm.
I went from feeling great to a pain level of about 9 with no warning whatsoever. In my case, there’s really not much that can be done when the pain hits that hard, that fast. If the pain sets in slowly, there’s a good chance that I can head it off by exercising; the endorphin kick from working out really does wonders. The problem is, for that to work, I need to have some kind of warning that the pain is coming, which rarely happens.
I can’t speak for anyone else, but for me, pain killers simply do not work. I have literally tried every type of pain relief available. Perhaps not every single drug/remedy, but at least one out of every branch; NSAIDS, opioids, corticosteroids, acetaminophen, muscle relaxants, anti-anxiety/depressants, and even anti-convulsants. I’ve tried physical therapies, massage therapy, chiropractic treatments… None of them help with the pain. The best result that I can ever get from a pain reliever is that it makes me too stupid to care about the pain. The pain doesn’t go away, and it doesn’t ease up, but the drugs cloud my head so that the pain just doesn’t seem important anymore. Needless to say, it’s very difficult to function like that. For this reason, pain killers are always my absolute last resort.
It’s never a question of whether I’ll make it through a flare up or not; the question is will I make it through without having some sort of nervous meltdown. Most of the time, it’s easier to just suffer through the pain; at least I can still change the TV channel if I want to or get myself a bowl of cereal. I HATE the way the drugs make me feel. Not only do they make me completely useless, they usually have the side effect of making me feel depressed. Sometimes though, the only choice I have is to let go; it’s either my independence or my sanity. The drugs will eventually wear off… If I lose my mind, I won’t be independent anymore anyway.
Monday was one of those days. It started at around 3am. I had been having a nightmare that someone was basically flaying the skin off my left arm; it was not pretty. When I finally managed to escape back to consciousness, the pain was so intense that for a second, I questioned whether it was a nightmare or not. Once my head cleared, I was so nauseous from the pain that I was afraid to move for fear I’d be sick. I knew there was no way I was making it through the rest of the night on my own; I just took the pills. I managed to fall back asleep, but it was far from restful and since the drugs only last for a few hours, I was wrenched awake again around 7am. Once again, I didn’t even try to fight it, I just reached for the bottle of stupidity.
By 9am, I was completely befuddled from the drugs and lack of sleep. When asked how I slept, my response was something along the lines of “like shit, but I think I’m high…”. (Sorry, love, I’m sure that’s not what you wanted to hear first thing in the morning…) Needless to say, it was not the best start to a Monday, or any day, for that matter.
My day didn’t get much better from there. I managed to make it through the rest of the morning without taking anymore pills, but it was mostly through sheer stubbornness: there were things that I needed to deal with and I had to be clear-headed to do so. By about 3pm, I knew I wasn’t making it any further on my own. I was exhausted and the pain was making me addle-brained anyway, so I went for the meds, the couch and The Lion King.
Of course, by this point, I was also angry. Normally, I take that anger and pound it out on the pavement, but when you’re so doped up that you can’t even follow a Disney movie, physical activity is out of the question. I ranted and raved in my own head for a while, but eventually, the drugs took the anger away as well, only to replace it with a sort of hopeless apathy. One of my last clear thoughts was that even though I use my rage to fuel the changes I’ve made in my life, the anger is one of the worst parts about having a chronic illness. The illness itself may not be contagious, but the feeling of being powerless is.
It’s easy to forget that you, as the sick person, aren’t the only one dealing with the illness. The people who care about you suffer too. In fact, I would even go so far as to say theirs is the harder role. I know that I would rather suffer myself than watch someone I love have to go through it.
When you’re dealing with something that’s incurable and difficult to treat, *everyone* feels powerless. I’m no expert, but it seems to me that unless a person can find a way to deal with it, eventually that feeling of being powerless turns to anger. They’re not angry at the sick person, they’re angry at the situation, but how do you handle that? You can’t go around trying to hide your illness, it only makes matters worse; but when you tell your loved ones about it, it only seems to stress them out…
It’s damn near impossible to talk about, since no one ever wants to tell the sick person that their illness is fueling their anger, in fact, from my own experience, most people seem to feel guilty admitting that fact even to themselves. Instead, they find other things to be angry about, which only adds more fuel to the fire. Sooner or later, the rage jumps from one person to the next and you end up with a houseful of pissed off people, but no one can explain why.
I understand that it’s not “my fault” that people are upset by the situation, but I still feel guilty about it. If I weren’t sick, they wouldn’t have to worry about me, which would take at least some small portion of stress out of their life. It’s a vicious circle: watching you suffer causes them to suffer, which causes you to feel even worse… How do you break that cycle? Is it even possible? I don’t know the answers to these questions, but I am going to try to find them.
To be continued…
Feb 12, 2014 @ 15:46:01
Keep sharing , I hope it helps you because it helps me to know that I am not the only one who goes thro this
Feb 12, 2014 @ 16:40:31
It does help, tremendously! I’m glad to know we’re able to help each other!
Feb 12, 2014 @ 21:28:02
I’ve just started getting the “flayed alive’ symptoms in both arms. Waking up to that is – unbelievable. I’m still not sure what’s supposed to be wrong with me (Fibro, Lyme disease or as one loon put it, just chronic pain). I am glad I saw this today, not that you’ve been ill but because I feel as if I’m going insane.
It seems everyone is talking about the difficulties of the carer – but what are ‘we’ supposed to do. I can say I’m alright but it’s nor true and to say anything doesn’t really help either.
I’m beginning to wonder what I’m doing. If I’m hurting others I’m not doing what I want to be doing. Is there an answer?
Feb 12, 2014 @ 22:16:59
I’m sorry to hear about what you’re going through, I remember how hard it was waiting for a diagnosis; explaining your symptoms over and over again only to have someone say “I really don’t know, let’s test for…”. Then when tests come back negative, they send you on to someone else so that you can repeat the whole process. The good news, you’re not insane and you’re not alone. So many of us suffer in silence because we’re afraid of people not believing us, or worse, we actually begin to believe that maybe it is just all in our heads. I write about my own pain in part because it helps me get out of my own head, but also because it lets others know that they aren’t the only ones dealing with this. I’m so glad that you decided to comment on this post, it’s so nice to know that I’m not the only one wrestling with the issue of “what ‘we’ are supposed to do”. The only thing that I can say for sure is that hiding your pain does not help. It may seem to make things better at first, but I can tell you from first hand experience that it will only make things more stressful in the long run. I sort of explained how hiding my pain worked out for me in an earlier post (https://fightingfibrowithfire.com/2013/06/23/choices-and-dreams/), so I won’t bore you by repeating it. For what it’s worth, my advice is to be honest with your loved ones, maybe you don’t go in to the gory details of exactly how awful you feel, but at least let them know that you’re not feeling well. Please feel free to contact me with any other comments/questions you might have or even if you just want to discuss silly cat pictures 🙂
Feb 13, 2014 @ 10:31:58
Thank you – that means a great deal – as I know you would appreciate. My kids are grown – adults and way from home, I’m not sure if that’s good or not. I’m finding it really hard to keep the communication going when it’s so one sided. They are over the sickness thing. My ex was a chronic depressive and caused tons of problems not getting help. Dad died with Cancer, Father in Law cancer less than 12 months later and then I started with the accidents which went on from there. I think by the time I had thyroid cancer they were ho hum about it. When Mum died it devastated everyone and they haven’t mentioned illness since. I tried to tell them but I felt I was talking a foreign language. (Just the diagnosis). Truthfully, I feel like buying a plane ticket and finding some hell hole and sitting on a bomb. mainly because the damned thing wouldn’t blow up! I don’t see my Lyme doc until Feb 24th – 3months since the last time. It’s too long when you can’t talk to them in between. Sorry – this has come out like a post.
Take care of yourself. Susan x