Living with instead of fighting against…

March 17, 2017 Savvy Spoonie Leave a comment

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.

Healing, health, Just me

Why giving up is a good thing…

February 28, 2017 Savvy Spoonie 4 Comments

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.

Just me

The Bitching Hour…

February 7, 2017 Savvy Spoonie 2 Comments

There is a time of night I think most Spoonies are familiar with when sleep hasn’t hit yet but all the aches and pains in your body come screaming to the surface because you aren’t in the process of distracting yourself from them because you are trying to sleep.

I call this time “The Bitching Hour”.

It’s an asshole-ish time of day filled with all the hurts but also all the irritating emotions that come with hurting. For instance, right now my joints are aching and my head is pounding. Every keystroke is painful. So do I stop writing this blog post and try again to sleep? No! Because damnit I deserve to write a blog post when I want to! Haven’t I given up enough?!! Do I have to give this up too? What am I going to do if I don’t write? It’s not like I’m going to magically feel well enough to sleep!

It’s the time of night when my body is bitching about all the things wrong with it and my spirit is bitching about all the things it’s lost because of all the things that are wrong with my body.

Well today I am not going to let The Bitching Hour win. Yes I hurt. Yes sleep is an elusive concept floating somewhere above lake Michigan. However, I don’t have to feel sorry for myself just because things hurt and I’m tired.

My son is sleeping next to me, his warm little body and soft little boy snore emanate a comforting peacefulness that lifts my spirits. My little dog is under the covers at his feet keeping him warm and my cat alternates between being on my lap and next to me on the bed. Well, and demanding kitty treats. I have a fireplace in the corner of my third story room and the bed is covered in quilts made by my lovely mother in law. I am curled up under a quilt she made specifically to help me feel better in precisely these moments and it works. I feel better.

I am starting to get some cards back from the people I sent cards out to, which is a pleasant surprise as I didn’t really send the cards out with the intent of having them answered so much as improving my ability to reach out into the world from within my Spoonie cave.

Eventually sleep will come and I will rest and if I don’t it’s no big deal. I can sleep in tomorrow. When I do sleep in it will be next to the warm and comforting presence of my husband and hero, who will crawl into bed with me when he gets home from work. Nothing too shabby about that prospect at all.

So there Bitching Hour. Go find someone else to torment. My blessings are proving armor enough on this occasion.