Hello November and Pain Awareness Week!

November snow by Anil Reddy

Hi everyone! Sorry it took me a week to post! Today is the start of “National Pain Awareness Week” here in Canada. I’m hoping to feature some guest posts from other individuals who live with chronic pain in order to raise awareness (anyone who’s interested can email me katie.robertson@live.ca). I’m also going to be re-posting from my Canadian Pain Summit trip and speech and talking a bit about how things have started to changed here following the summit.

I finished the poster I’ve been working on for the ILC Foundation tonight. As far as I know they plan on publishing it to coincide with awareness week. I’ll be putting it up on the blog as soon as I can. I’ve got a few drawings here to finish up and then I’m hoping to blog a drawing challenge that I found. It sounds like loads of fun and I’m really looking forward to it.

As for how life is, this past week was pretty unpleasant. I’ve spent most of it with a horrible headache and the accompanying nausea. Most of the time all I feel like doing is laying down but my back disagrees with that notion. A few days ago one (or more) of my ribs dislocated, much higher up than usual. I could still bend where as when the lower ones are out I can’t. But, this one being so high up made it unbelievable painful to breathe. It almost ended with a trip to the hospital but that usually doesn’t do much good so I just tried my best not to breathe too hard or move the wrong way. It seemed to make something in my shoulder and collarbone go out a bit as well. Or maybe everything was just spasming because of the rib. Lucky for me the dislocation only lasted about 12 hours this time instead of the couple of weeks it took to go back in last time. I’m really grateful for that. 

I had an ultrasound last week on my gallbladder, kidneys, liver, pancreas, appendix, bladder, stomach intestines and aorta. i’m not sure what the majority of it was ordered for apart from to check on my gallbladder polyp but I’m glad my doctor’s checking on things. I haven’t heard back from them so I’m hoping that’s a sign that everything looked good. The ultrasound itself went alright aside from my ribs not taking it too well and the technician telling me that “pain is good because it lets you know you’re alive” when we were discussing my chronic pain. I’m going to venture to guess that whoever first uttered that phrase hadn’t experienced a whole lot of suffering in their life. Oh the things I wish I’d said in response!

Anyways, happy November to you all! Hope your October was enjoyable! xx

Treading water.

Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and four days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell trying to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I want need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thoughts and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing. 

Clenching my fists.

Yesterday was a good day. I slept decently, vacuumed, went to the store and went visiting, all of which I did happily and in a minimal degree of pain. I sang, I danced around and I smiled. I think that the last time I had a day like that I was in my early teens.

Today however, is the polar opposite. I am nearing my threshold for pain tolerance, edging closer and closer to the breaking point. I think that I have multiple subluxated ribs and can’t take a deep breath in or bend over. The pain that it’s causing is nearly jaw breaking and I’m finding no relief in anything that I try to ease it with. My spine is radiating searing pain down to the tips of my toes and my head is throbbing so badly that I can actually see my pulse in my eyes and hear my teeth knock together in tune with it. I don’t think that this is payment for yesterday – save for my back which is very likely worse because of the vacuuming. If it were though, I’d take it – as hard as that is to swallow in all of my current misery. I mean, when was the last time that I could pinpoint a specific date and say that was a good day. This rough day however, will eventually pass and fade into a background littered with similar days. Only this time I will have the memory of yesterday to tide me over.

I desperately need support right now but I’m extremely snappy and irritable so instead I’ve been isolating myself to keep from hurting anyone that I care about with my anger. It’s nobody’s fault and I know that. It’s just one of those day where you feel like a fizzy drink that’s been shaken up – you need to blow the lid off and let some of the pressure out. You think that taking out all of your pain on someone might make you feel better – but I know that it never does. For now I’m holed up in my room, gritting my teeth and clenching my fists, just waiting for some kind of relief to find me.

“And when at last you find someone to whom you feel you can pour out your soul, you stop in shock at the words you utter — they are so rusty, so ugly, so meaningless and feeble from being kept in the small cramped dark inside you so long.” ― Sylvia Plath

Pop, Lock…Stop?

You may remember me writing a post a few weeks back about how I started picking back up on my fitness regimen and was going to the gym every second day. Seems that has slowed right back down, in part because of my body’s resistance and in part because of my brain’s.

I was going to the gym and all was well until I noticed that even light weights were beginning to cause multiple joints to pop. Literally my shoulders, ribs, hips, knees, and ankles would pop as if about to dislocate. Now, I know these things are more likely to happen in those of us with CTDs and I had experienced them here and there but never to this extent. At first I just ignored it, reasoning that the stronger my muscles got the less the joints would react but eventually it was causing them to be continually bothersome at home as well.

Eventually I got in to see my doctor and reluctantly asked her what she thought. I should mention that something in my throat had also recently begun to dislocate. I noticed if I were to look down and swallow that there would be a popping sound and sensation in my throat followed by an excruciating pain. And when I say excruciating I mean it. The pain would be made worse each time I swallowed, but eventually the act of swallowing would cause another pop that would make the pain go away as if it had never happened. Thank goodness because I wouldn’t be able to handle it for more than a minute or two. This has happened a few times now.

Along with this a few of my ribs have begun to subluxate. This is also quite painful and seems to be followed by the trademark pop. First it was a pop in my ribs, then this last time it was in the shoulder opposite the one above the ribs that dislocated. When this happens it’s impossible for me to bend over, in fact I can barely move. I can hardly breathe in either because of the pain it causes and both times I’ve gotten extremely light headed from the shallow breathing. There have been other occurrences similar to these but much less painful. I wouldn’t be able to breathe in very deep without it hurting but often a cough or swift deep breathe would be just the thing to ‘pop’ them back into place. These last two incidents happened only two weeks apart which is scaring me into thinking that they are becoming more and more common. When they dislocate like that there is nothing I can do but hobble my way to my bed and lie there. After this all of the surrounding tissue etc takes a while to fully recover.

Now, back to my doctor’s appointment. She told me that it’s obvious to her that my joints and tissue are becoming ‘looser’. As to why so much, so suddenly, she isn’t quite sure. Her advice as far as the gym was that it’s extremely important for me to stick with it as the extra strength will aid in making up for my faulty tissue, but that anything I do in the gym will have to be done extremely slow. To explain it she stated that “what will take a normal body a couple of weeks will need to take you 2-3 months.” She said that muscles strengthen much faster than tendons and ligaments which are what need to be strong in order to help hold my joints where the tissue is failing. So, I need to give those things time to catch up to my muscles. She explained that light weights and repetition is the key and that upping the weights will need to be done little by little over a long, long period of time. As a competitive person who used to pride herself on the sports she played and loved it’s safe to say that this news demolished my motivation. For some this may not seem like a big deal, but it’s hard when your body tells you that you can’t, over and over. “You can’t sit in a classroom”,”you can’t play basketball”, “you can’t run”, “you can’t lift anything heavy”, “you can’t have that career”. It’s like a chant stuck on replay in your head. Everywhere you turn is another reminder that you can’t. This is my brain’s resistance that I mentioned before.

But there are things I still can do. I can walk, I can ride my bike, and I can go to the gym whether I want to go slow or not because going slow will get me a lot further than not going at all will. I’m just going to have to learn to accept this new development and that might take some time. But I haven’t given up and I’m still willing to work on it, and for now that’s enough for me.

“If you’re trying to achieve, there will be roadblocks. I’ve had them; everybody has had them. But obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.” – Michael Jordan