Chronicles of an Ice Pack Queen

So the battle continues. It’s been about a week and a half since my last post and not much has changed. The rib pain and I continue to do our dance. It’s driving me bonkers and making what little gains in sleep I had been getting (amen to four hours in a row) regress back to two or three hour chunks. The interesting thing is the ice packs and heating pads both feel good when they are on but they both provide little long-term relief. Such is life. I am either freezing or sweating…

I did make it to meditation with Mom this week, and I still can’t believe how much I enjoy it. I am not really good at it yet, but it’s a wonderful practice. I feel very “relaxed and zen” afterwards…like I’ve had a deep rest. I can see how working this into my daily life at some point is going to be incredibly valuable.

Also hit the gym with Jen once. It was super light. A little bit on the more horizontal bike, some light weights on the circuit and then as a reward….hydro therapy massage bed. O.M.G. That thing is amazing. I use it as my motivation to get to the gym.

I also had a call from long-term disability, which was good in the sense of my file moving forward but stressful at the same time. Hubby actually saw great humour and irony in the fact that they called the cognitively impaired person to have her talk extensively, and with great detail and articulation, about her impairments. I hadn’t thought about that until he mentioned it. I was comfortable knowing the call was coming and felt completely equipped and ready but after I told hubby about the conversation, I realized that I may not have been the right person to ask.

I didn’t tell her how I used to love to get up in the mornings and spend a 45 minutes in my beautiful “get ready room” putting on makeup and curling my hair. I haven’t touched a blow dryer, curling iron or straightener since the end of June and haven’t shellacked my face even once…sniff….And, if I am being honest with y’all, cause you know that’s how we roll, I rarely even brush my hair. I just tie it up on the top of my head. Hubby said he’s see it down once this summer, and I didn’t even style it, I just brushed it. Sad.

I didn’t tell her how I used to love to take a nice, luxurious bath every single night. It was my thing. The idea is now overwhelming. When did taking a bath get over-fawking-whelming??? Getting in, washing, shaving, climbing out, drying, moisturizing…..I. Just. Can’t. I take a bath once a week now, and it’s usually on laundry day when hubby wants to wash my gym pants. I live in the same pair (and same shirt) day and night until laundry day when Hubby says they can stand on their own and enough is enough…

I didn’t tell her how I used to golf and how deeply I loved it but haven’t seen a green this year…haven’t felt the glove in my hand, the connection to the ball, the FUN and laughs Hubby and I used to have. And how I would normally be gearing up with excitment for a winter season of snowmobiling, downhill skiing, cross country skiing and snow shoeing. Instead I am gearing up to sell our snowmobiles because I couldn’t go even if we had enough snow.

I didn’t tell her about the many family events and activities I’ve had to enjoy via photos on Facebook after the fact instead of attending in person because I am in too much pain to attend. It broke my heart to miss this year’s annual pumpkin carving day…I sit home and cry…I feel like a failure. I feel like I am letting everyone down, all the fawking time, but I don’t know how to make it better and even if I did, I am not sure I’d have the energy, or smarts, to make it happen.

I didn’t tell her that Hubby (and very close friends and family) talk a lot about how different I am, both in personality and in how I look. How my spark is gone. How droopy my eyes are. How gray my skin can get. How overwhelmed and exhausted I look. And the celebration we have when I have a day where I seem more alert. My God, I used to be ON FAWKING FIRE and now “being alert” is a win. WTF!

She asked about hobbies, and I told her about my blog and how much it helps. But I didn’t tell her that what used to take me an hour or two to write, now takes me three or four days. The struggle to find words and sentences to string together to express how I feel and think, something that used to come to me as naturally as breathing, now takes exhaustive effort (and extensive rewrites). Must I lose this too?

I didn’t tell her about how insane my brain feels like inside. How it’s on some kind of frantic loop, ALL THE TIME! When I  think about something (like groceries I need Hubby to get, a bill I need to remember to pay, or something I want to research), how it plays over and over and over and over and over and over in my head. And that as soon as I stop and try to make said list, do the research or pay the bill, as soon as I stop to DO IT, it disappears…POOF…and I am left with a thread of something I know I needed to do…but  can no longer remember. I mean, we’ve all experienced that from time to time but this is like your every-so-often experience just snorted fifteen lines of cocaine. Somedays I wonder if I am losing my mind. Is this what going crazy feels like?

I didn’t tell her that I have to watch TV or read to the point of exhaustion so that I can shut my brain off long enough to ignore the pain and the racing thoughts so I can fall asleep. It’s this endless loop of OCD insanity about shit I don’t even care about. Honestly, I’ve always found great comfort in talking to myself but now I can’t shut myself up. WTF?

I didn’t tell her how every day I feel like I lose a little bit more of myself and that I am starting to wonder if I’ll ever get it back. Or that I am barely keeping the question of “what will you do if this is it…if this is your life here on out…” at arm’s length because if it comes any closer, I am terrified I will shatter into a million pieces and lose myself completely.

Hubby asked why I didn’t tell her all of that (and more…) and honestly, when put on the spot, I just don’t have the cognitive ability to pull it together. I needed time to think and ponder the questions, consider the information, talk to Hubby or Mom to get their perspective. Information, knowledge and understanding that used to be accessible in a split second now takes hours or days to process, make sense of and put together.

But also, I think it’s something we are either naturally tuned to doing or maybe it’s part of how we are raised. I feel like it’s in our nature to downplay how shitty we feel, how extensive the impairments are and the true impact of life’s challenges on one’s life. People ask how I am doing all the time, and I say “the same…still fighting the good fight…” and I usually move into either talking about what new thing might help or I move the conversation to them. But don’t we all do that, to some degree anyway?

Your coworker or bestie fires you a text to ask how you are and frankly, you’ve had an all star shitty morning…got in a fight with your man, your kids were grating on your last nerve, you had terrible night sleep, got some kind of weird kink in your neck, you didn’t have time to eat and you have a deadline hanging over your head but you reply “not bad…you? Wanna do lunch this week and catch up?

I mean honestly, when people ask me “how are you?” do they really want to hear the same shit, every time…that I am still drowning in pain, that there is never, ever a single fawking moment in the day where I am without pain humming through my body…how every single time I wake up from sleep, it’s from that pain literally vibrating through my body…in my feet, my ankles, my calves, my thighs, my arms, my back, my neck, my ribs etc…and that it never stops. That medications help take the edge off but nothing stops the pain. That I am so deeply depressed that it’s getting harder and harder to honestly care if I’ll ever get better.

Instead I hit the high points. Had four hours sleep in a row a couple days ago, the rib pain is still pretty nasty but I’m getting through it, and starting to look at a plant-based diet to see if that helps…

Frankly I think it’s a coping mechanism too. I reread this post and shuddered. I could EASILY drown in self pity, frustration and anger if I sat and thought about what I’ve lost thus far, how far I’ve fallen, and the fact that we don’t know when, or even if, I’ll get my old self back day in and day out, every day. Mother of God! I have to keep it high level, not just with other people, but I guess with myself as well, so that I can hang onto what little will and motivation I have to keep pushing. Pushing to try a better diet, to try meditating, to call the chronic pain guy, to reach out to see a psychologist, to try to get out of the house a couple times a week, to take that bath once a week…

If I didn’t, I’m not sure I’d ever get out of this gravity chair again.

Natalie

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Comments

  1. Jackie Sproull says:

    So sorry you are going through this Nat. I too remember that outgoing, vibrant girl at the checkout at Simms HH. Wish I could take some of your pain away. Hugs

  2. karenmcfarland says:

    “I mean honestly, when people ask me “how are you?” do they really want to hear the same shit, every time?” Natalie, you are talking about my life girl. I have had this for forty freaking years!!! Yes, you read that right. And you don’t want to complain. Who wants to listen to someone complain. I get it. So you skim over the crap and try to come across positive, but you totally feel so much worse than you let on. Again, I am so sorry you’re dealing with this. I guess I have so much compassion for you because of what I’ve been through. I wish you all the best with disability in Canada. I hope it’s a lot easier than here in the US. I am just so grateful for the doctors and friends that have steered me in the right direction or I would have slit my wrists a long time ago. (I’m kidding and I’m not kidding. IYKWIM) I understand the no makeup, the no hair done, no bath (Too much energy!!!) I get the whole thing. And it’s real. Don’t let anyone tell you it’s all in your head. I’ve heard that for years from doctors who didn’t know how to help me. And if they don’t know what it is, well, then, you must be depressed because after all, that’s what they always fall back on since clinically they don’t have a clue what to do. I am here for you girl. Let me know how I can help. I’m sending great big hugs to you! Love, Karen.

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