Time for an update? I think so.
So, lemme see. Since I started this blog to let my friends and fam into the MS side of my life (that I rarely talk about), how about an MS-focused update?
Cool beans. Here we go. This'll be a long one.
It likely goes without saying, but having MS sucks. It's scary and frustrating and flat out debilitating at times. It can steal your energy before you're even out of bed. It can ruin hikes in the rain or walks on a beach. I'm truly fortunate in that my MS hasn't affected my daily life in significant ways yet, and I don't take that for granted, but let me talk about the way it's been weighing on me the most lately…
I was first prescribed Avonex in January of 2007. Avonex is a drug produced by Biogen that gets injected into the muscle once a week, rotating injection sites (quad muscles) each week. In a message to my mom in 2007, I wrote:
I had my neurologist appointment this morning. I'm not scheduled for another MRI. He doesn't think it's necessary right now since I haven't had a major relapse since the last time I saw him. He prescribed Avonex, so I'm going to start a weekly program on that. I'll be giving myself an injection! Eek! Once I get all set up with the drug company the neurologist's receptionist is going to schedule a nurse's visit for me. I think she/he comes to the house the first few times to make sure I'm stabbing myself properly. :)
That "Eek" actually meant "I don't know what I'm in for and I'm more than a little nervous." Granted, the thought of an injection once a week wasn't as ugly scary as the time I spent waiting for a diagnosis, going through a million different tests, and wondering if I had everything from a B12 deficiency to lupus to a brain tumour.
So, I started Avonex therapy for relapsing-remitting MS, and a lovely nurse trained me on how to self inject using an orange as an example. My quad? Not an orange. I gave myself my first shot when the nurse was there to make sure everything was okay. It was scary, but I kept telling myself that it was a good thing - I was taking steps to help myself - yay! After the initial nurse's visit, I was on my own.
In February of 2007, I updated a friend with the message, "Lemme tell ya...injecting my leg isn't the same as practicing on an orange!"
By that time I was 3 weeks into therapy. Let me just jump in and say that I have had no problems with Avonex and this post is in no way anti-Biogen. Avonex has served me very, very well, and my MS is reasonably stable. The downside is that I sometimes get very strong flu-like side effects (mainly fever and headache) within 4-8 hours of injecting, but that's about the worst of it. A weekly weekend short-lived flu.
I don't know the dates for sure, but by March of 2008, I was using an auto injector. I had developed a lot of anxiety over injecting, for no reason that I could pin under my thumb, and the auto injector seemed just the ticket to get me comfy again. Auto injectors do the "pierce the skin" part of things, but I still have to administer the drug myself. Intramuscular injections don't feel great*, I won't kid you, but I couldn't figure out why the process was making me so stressed out. I didn't feel like it was an "I HAVE MS" flashing reminder or anything. I don't feel like I live in denial of MS and this was some sort of difficult face-to-face with it. Before the injector came into my life, I'd sit and sweat, gripping the syringe tightly, needle hovering over my leg. I'd need the TV off. I'd need the TV on to distract me. I'd need company. I couldn't stand company. I'd need someone to pay attention and be involved. Stop staring at me!!! I'd need…well, what I thought I needed was the auto injector I had seen advertised. And so I ordered it. It meant a change in the needle I used, but the new needle was smaller, so no problem there, and Biogen offers the needles "for free." (Sidenote: Biogen, darling, when the drug's base cost is over $21,000 a year, nothing you give me should be called "free")
This new auto injector was fantastic. For quite some time, I nearly cried with relief when an injection was finished. The injector had made my injections so much easier. See, I'm not technically afraid of needles. I'm afraid of seeing my body inflict pain on itself. The auto injector took away the fast, jabbing arm movement it took to break the skin, removing some of the drama.
And so it went…for ages it felt like part of my weekly routine. Get off work on Friday, go for supper, go home, inject, bounce around with a fever for a few hours, and then presto, Saturday morning arrived and all was relatively well. But that's not how it stayed. My anxiety over injections waxed and waned. It was never a predictable state of being.
I'm not sure when it started again, but injections have gradually become more and more difficult for me. Nance has been a fantastic support for me through all of this and I really owe her a lot for her kind words and endless patience. She breathes with me. Makes me move out of the moment and walk away for a bit before trying again. She encourages me to do things I try to do on my own and fail at. Ultimately, I feel like walking away from a tough situation, even for a minute or two, is a failure on my part. The thought is illogical (as she bluntly/kindly points out), really, but there you have it. I'm not Vulcan. One night I sat from 10 until 1, unable to push the injector's button. Locked in a ball of stress, frustration, sweat, and tears for three hours.
I'm not completely sure what's going on with me and why this process - something that I feel should be a fairly routine thing - has become difficult again. Every bit of me wants to push the injection button except the tiny few muscles that do that work. I've been holding the injector in place so tightly that it's been leaving circles imprinted in my skin. Not helpful. I've really been trying to lighten up on that end. I realize that inflicting that pain alone, even though I'm unaware of it, can send out an early warning to my body that bad things are about to happen.
It didn't take too many Friday evenings of this to push me into doing some research. Frankly, I'd rather be doing anything than crying at a piece of metal and plastic over a shot that I've been taking for years now. So, I looked into the anxiety reaction and apparently it is really, really common and one of the big reasons people stop intramuscular injection therapies! Why didn't anyone tell me? People who self inject often end up having to have someone else inject them. I had no idea. Some bring their medications to a clinic every week to be injected. Why isn't this side of injecting made more public? I called Biogen (rather, their support team that goes by the friendly name MS Alliance) and talked to a very young nurse who basically told me to try to frame my thoughts in a positive way, or to bring my syringes to a hospital to get a nurse to inject me. Uh, not helpful, lady. I'm stubborn. I need to do this myself.
So, I did some more research and found this great workbook called Learning to self-inject: a cognitive behavioural approach to overcoming injection anxiety, by David C Mohr, Ph.D., and Darcy Cox, Psy.D. I'd link it, but honestly I forget where I got it. Finally, I had found something that explained WHY I was having this anxiety response to injections. I wasn't cracking up!
I'm going to break the concepts behind the workbook down a lot, but basically I see something that I somehow perceive as a danger (sharp needle + knowledge that injections hurt), that sets off a reaction in my unconscious midbrain, my midbrain tells my sympathetic nervous system, "danger is near - react!" My sympathetic nervous system then ramps up my heart rate, blood pressure, muscle tension and whatnot, and in my case, it causes me to...do nothing. My thumb and middle finger hold the safety open, and my index finger hovers on top of the injection button. My brain is trying to keep me from harm, so it stops me from acting. That freeze response then contributes to my overall feeling of fear and/or anxiety. This is a FANTASTIC system if I see a mountain lion in the woods (fight or flight - tough call with a mountain lion), not so great when I'm trying to give myself an injection.
So, what can I do about it? We'll see. This workbook helped a lot for a few weeks, maybe even months. I followed the breathing techniques, which, as someone who has practiced Ashtanga and meditation for years (admittedly off and on with the yoga), I should realize is important. I tried focused muscle relaxation too, which is also great. But, I'm finding it tough again. So I'm going to try to see a cognitive behaviour therapist in the near future to see if that person can help me build myself some coping tools for dealing with injections. Relaxing rather than getting frustrated.
Let me just say that I am very lucky. I know if I needed someone else to perform my injections, I have people who love me close at hand who would be there in a second's notice. The flipside is I'm a stubborn Newfoundlander, from a long line of stubborn Newfoundlanders, who needs to tackle things rather than tiptoe around them. I'll report back with results!
*I have what's known as Hyperalgesia (fancy word for "fuck, that hurts more than it should"), or a heightened sensitivity to pain. When I stub my toe, I often end up weeping. Injecting into muscle hurts. Injecting into muscle of someone with Hyperalgesia is downright painful.
P.S. Did y'all see that Montel Williams had the Liberation procedure for CCSVI?