A short statement on the utter exhaustion I can feel after a normal day of work.
I love the fall. It’s by far my favorite season. I love the rain and the mist and the cooler weather and fuzzy sweaters and tea.
Unfortunately the fall doesn’t love me. The rain and mist come with pressure changes that make my head feel as though someone is trying to crush it, unless it feels as though it’s going to explode.
I try to enjoy the fall, I break out my super soft sweaters and leggings first chance I get. I don my ultra thick fuzzy slipper socks and wrap up in my soft pink muppet shawl. I curl up with pets and coffee and try to relax.
It’s just harder to enjoy it. My jaw stabs in little reminders that the pressure is shifting, my head aches with an increased dull throb, and every little sound makes me want to kill.
Winter will be worse. Snow storms bring the worst in pressure changes, pregnant clouds will beat down upon me until finally releasing me when the snow actually falls.
There will be days spent in my room, curled up next to my cat, fireplace on, wishing I could do more.
For today I am pulling in the feelers, retreating into myself.
Things are brewing. My paintings are gaining a modicum of popularity, a complete stranger bought something from my Amazon Handmade page, and Pirate Fest is coming up in about three weeks.
I am determined not to give in to the desire to flounder.
Having said that, I have something I have to do and I admit I don’t want to.
I have to, HAVE TO, treat my body better. I stretch a bit and walk almost every day, but it’s been years since I really pushed myself to exercise. This is really stupid of me because all the literature says the only thing that really helps Fibromyalgia is exercise.
In the past I haven’t exercised as much as I should because I was working. Now I am not. I no longer follow the 40 – 60 hour a week schedule I used to use as an excuse to stay away from the gym.
So my doctors have suggested it, the literature suggests it, I have time for it, why am I not shaking my booty?
I think I’m scared. I think I am afraid I will be disappointed or embarrassed by my limitations, which really is stupid because I’m the only one whose going to be around really so why would I be embarrassed?
Ugh. Maybe it’s just easier to walk and call it good. Who knows. All I do know is the excuses are gone, the medical situation calls for it, and if I am really going to try and manage my symptoms with minimal medication I have no excuses for not exercising my way to a more well managed disease.
So. Swimming twice a week. Crunches every day. 15 minutes of yoga when I wake up and 15 minutes before I go to sleep. Arm exercises with my wrist weights on when I am resting in bed. Then maybe, just maybe, I can get myself to run again.
Time to program the new Vivofit, set myself some goals, and get up and at ’em.
Like many spoonies I spend a lot of my time trying not to look sick. It’s not because I don’t trust you to be sympathetic and supportive, it’s mostly because I get sick of my symptoms and want to be able to enjoy whatever event I am attending without paying too much lip service to them.
However, they are always there, hiding in the background and working hard to pull my attention away from your story, the movie, or the amazing meal you cooked. I have to chastise them like poorly behaved toddlers to keep them in line.
Which is why I hate getting sick on top of being chronically ill. That nasty, achy, flu-like, feeling you get with a fever is a daily occurrence thanks to my Fibromyalgia, so when I have an actual fever things suck.
It begins with me feeling like my body is filled with jagged pieces of glass when I move. Everything hurts. Then when I lie still everything hurts. (It turns out lying on jagged pieces of glass isn’t pleasant). Then I will get cold, really cold, deep freezer cold, but the second I pull up the blankets I am boiling hot. Lobster death hot.
At this point I will recognize something else is going on. I will take my temperature, it will be high. I will feel completely and irrationally betrayed by this additional invasion of my already sick body. Shouldn’t I get some kind of “Get of the flu free” card? I have a chronic daily illness, well two actually, shouldn’t that make my body a no fly zone for summer colds, winter flus, and the bacterial crap that hovers around polite society waiting to turn us all into wretched piles of indiscreet bodily functions?
I have become incapable of pushing through colds. I guess it’s because my daily push is so much work that adding the extra layer of suck renders me a wibbly wobbly mess. Every single thing becomes a personal affront to me. I cannot handle the smallest difficulty.
So today, on day two of fever and suck, I feel beset by my illnesses, both chronic and extra. I feel like a presentation exhibit for “What can go wrong with the human body”.
It’s been a couple of weeks since I posted about the best part of giving up. I thought I would follow with an update on life living with, instead of fighting against, chronic daily migraine and fibromyalgia.
This time last year I had three to four specialist appointments a week. I would see my dental specialist for face pain and my neurologist for yet another medication attempt, and my physical therapist twice a week. I spent most of my days either visiting doctors or recovering from what they did to me.
As of today I have quit all the medications with nasty long term side effects and limited if no positive benefits. I am managing my joint pain with Joint Comfort tea and Tramadol as needed. I am managing my headache with exercise, ice, and when absolutely necessary a pain killer.
This time last year I barely managed a shower every day. Now I get up, eat breakfast, feed the kids, get to school or at least help them get ready for school if I can’t drive that day. I clean the house and do laundry and make dinner. Delicious dinners too. I walk the dog nearly every day and my goal is every day. Now that I have a Wii Fit Balance Board in the house I work on my core muscle strength, arm strength, and flexibility playing video games for an hour every other day. (So sore!!) I am making it into work once a week with fewer missed days. I am working in my studio one or two days a week and painting for fun and relaxation here and there as well.
Through all of this my headache, joint pain, sore skin, and over sensitive nerve endings are ever present. They try to force themselves to the forefront of my consciousness on a regular basis. When they succeed I take a deep breath, acknowledge their presence, and work on relaxing my muscles and continuing my day. Sometimes they beat me and I have to go lie down and rest. I brew a pot of tea and snuggle my cat and either play a calming game or watch a show. I rest when I need to, I forgive myself when I cancel plans, and I accept that some days I will accomplish a lot and others I will make my cat and dog very happy.
I am in no worse pain than I was last year. I simply have stopped trying to defeat my enemy and am learning to live with it. I have found that simply stopping the medications removed the side effects from my life. Fewer side effects means more spoons. More spoons means a bigger life.
I am beginning to feel as though the darkest times are behind me for now. I can enjoy the burgeoning sunrise and enjoy time with my husband, adventures with my children, quiet morning coffees with my mother and shopping trips with my dad. Somehow, by embracing this disability, I am coming into my own.
I was having a conversation with a fellow Spoonie the other day and we were expressing our frustration with friends and family that keep telling us not to give up. I should be clear that both she and I have been to all the doctors and have tried all the medications and every treatment that isn’t brain surgery. She has had her headache for 13 years and I have had mine for 3 going on 4. This isn’t life threatening but there is no end in sight.
I don’t believe people are ill intentioned when they urge a chronically ill person to keep fighting but I don’t think they understand why we are better off if we give up.
There comes a time in the daily struggle of someone with an untreatable chronic illness when they are faced with a choice; either they continue to try all the treatments and medications and experimental stuff that has even the tiniest chance of curing them while bringing them untold discomforts in side effects and recovery times or they can acknowledge they aren’t going to find a magical cure and learn to live with their illness.
I have chosen the latter and so has my friend. We have given up and I, for one, haven’t felt this good in a damn long time.
I still hurt every day. I am still ruled by a headache that will be debilitating one day and not so bad the next with little or no consistency. However, I am no longer experiencing a long list of horrible side effects from ineffective medications. I am not going to see three or four specialists multiple times a week to the exclusion of living my life. I am no longer recovering from treatments or spending weeks in the hospital. Since giving up on a cure I have trained to be a silversmith, set up a studio in my basement, become a more attentive and involved mother, and kicked ass getting our house organized. I have begun to keep regular get togethers with friends. I have learned to manage my spoons, take rest days when I need them, and not feel guilty about canceling plans on bad days.
My energy now goes into managing my symptoms. I stopped taking all daily headache medications. I stopped taking all daily fibromyalgia medications. I use mindfulness, tea, and when it’s really bad tramadol to manage my pain. I exercise every day. I sleep as long as I need to. I listen to my body and I try not to judge myself when I have to rest.
I am living a fuller and happier life since I have given up the search for a cure than I have in a long, long time.
Giving up on a cure and the idea that this is all somehow temporary and accepting that I am disabled has freed my spoons up for learning how to live within my capabilities. I am feeling capable now because I am no longer comparing myself to healthy people. I am content carving out a satisfying existence within my limitations.
So, next time someone with a chronic illness is telling you they have given up I encourage you to rein in the urge to tell them to keep fighting. What they are likely telling you is that they are ready to learn how to build a full and happy life now instead of living for the day when they are magically healed.