Month of Gratitude, Week Four: Resilience

I don’t have much to say this week. I hope that all of you reading this had a good holiday if you celebrated Thanksgiving, and if you didn’t, I hope you had a good week in general.

I've been physically in pretty bad shape still, but I got to enjoy the holiday. I anticipated it being more difficult since this was the first holiday without my mother. It was definitely difficult but my family and I managed to still celebrate and enjoy our time together. It definitely won’t ever be the same. My mom was my ally in the family; she was the only one as weird as me. We had the same humor. She was the person who loved me the most in this world. She was my best friend. 

Now it feels like a piece of my soul is irrevocably gone. 

But it’s ok. 

The thing with surviving something traumatic and devastating is you think you can’t survive it. And then somehow you do. You put one foot in front of the other and just keep going.

I can survive it. I can keep going. I’ve built up a pretty strong reserve of resilience the last few years.

That’s what I’m thankful for this week: resilience. Before I got ill, I was a survivor but I don’t think I was very resilient. It’s taken years and quite a bit of training to learn resilience. You have to with illness or you’d never be able to get out of bed every day.

Resilience means hope

It means acceptance

It means survival

It means renewal

And renewal is a promise for a better day 

I’m not consciously feeling resilient right now but I know it’s there. I know it’s my life support that is keeping me going. It’s giving me strength unconsciously.

I’m grateful for that strength to enjoy every bit of life right now: spending energy on creativity, seeing my friends, watching their children get older, spending time with my family, eating pumpkin pie, watching Star Trek with husband, going outside, relishing that first note when I play a song, breathing in chilly autumn days, drinking a good, strong cup of tea.

Every bit of it.

I hope you had moments to savor this week too, and whatever battle you are fighting, that your resilience is sailing you to the other side as well. 

Outside to walk a few feet with my trekking poles. Who could ask for more?

A New Year

I don’t really go for sappy sentimentality but I do like the power of reflection, reflecting as an impetus for learning and changing. 2014 was a rough ride to say the least. It was the most difficult year for me health-wise and I felt like I was perpetually trying to claw my way out of quicksand. 2014 was a re-play of the nightmare of 2011: bizarre symptoms that only got worse and worse, trying desperately to hold onto a career and some normalcy, constant tears and heartbreak, low after low. But I don’t want to think in those terms anymore. 2014 also brought gifts that I never expected and wouldn’t trade for anything.

This was the year that I essentially “came out” with my illness and started to be comfortable talking to people about it and even feeling empowered by what I’ve survived. Starting this blog in February was a catalyst for this. As I look back through the posts, the chaos and desperation is palpable in almost all of them but I tried to use writing to regain some power over my life and to understand that chaos. It allowed me to stand in the eye of the storm and sometimes even laugh at the absurdity of it. I had been thinking about starting a blog for awhile but resisted taking the plunge. This has helped me be able to externalize my experience to try to make it useful and educational for others. I’ve also met some great fellow Spoonies along the way.

This is the year I became comfortable with the term “disabled.” I put off getting a cane, then the walker, and then the wheelchair as long as possible. I didn’t want people to see me for what I truly am. Now, I don’t care anymore. I’m more than happy to take my wheelchair or use an electric cart. They mean being able to leave the house safely and comfortably. They also have the added bonus of wearing less sensible shoes and using mobility aids as an accessory, like the glitter cane my husband made me . You also get VIP parking wherever you go when you’re disabled. There has to be a perk somehow.

Glitter cane!

I’ve been reclaiming some things I lost over the last few years. When I was ill, working, and resisting my illness, I was an empty shell of a person. I had no energy for anyone or anything. I was living in a perpetual state of terror, maintaining a calm exterior and an interior in profound disarray. Not living. Only surviving. Living a double life. Now I’ve been reading more, watching endless history documentaries about Neolithic Britain, and trying to write and play more music. It’s nice to have other interests besides working.

2014 was filled with strange enhanced interrogation medical testing, including getting stabbed with needles repeatedly, doing a balance test designed for NASA, and having hot air blown in my ears. Some people can talk about their adventures in travelling over the year, but I wonder how many of them have had a doctor say to them, "Ok. Now it's going to feel like you're peeing." Now, this is how to party.

I have made some progress toward a diagnosis. We know I have some kind of neuromuscular autoimmune disease that is likely Myasthenia Gravis but my doctor is hesitant to provide the official diagnosis. I'm trying to get comfortable continuing to live in the grey area. The plot twists of this medical story just keep getting more and more strange. Even without an official diagnosis, they started treating it and I can do more than I could a few months ago, including doing some sort of exercise every day. I hope to keep up the momentum of that success this year.

Since I’m home-bound now most of the time and creating a permanent indentation in my couch, I really savor moments spent with family, friends, my husband. I am more present than I’ve ever been in my life and that has given me real joy. I’ve stopped taking on things I am not physically able to do with the idea that “things will just eventually get better and I’ll be able to do it” and instead started thinking about living a life within my physical limitations. The process of attaining these gifts was brutal but in many ways it was worth it.

The best gift 2014 gave me by far is acceptance. I spent a lot of energy the last few years hiding my illness, feeling shame and guilt, and fighting it. This had a predictable outcome of only making me worse. I am no longer fighting it so hard and resisting every change and every low. I truly learned how to get over it. I no longer feel the need to explain, apologize, or justify, even with my doctors. I no longer have the energy to do this anymore and it is emancipating as hell. I am what I am so take it or leave it. I want to scream from the mountaintop “Screw it! Whatever! I don’t care!” Then sip some tea and go back to lying down.

I don’t have any resolutions, just a few goals. I really hope to reclaim some of my independence that I have lost over the last year (including driving), conjure more creative output (maybe even some recording), and keep working toward acceptance. (And maybe, just maybe make more progress with diagnoses). I hope to get back to being in tune with the world again. 

I hope that you are also able to celebrate everything you have overcome and achieved this year and I wish you all the best in attaining your goals. I wish you good health, lots of rest, tons of chocolate, and genuine joy.

Thanks for being part of this journey :)

This song by one of my favorite artists perfectly sums up my year. Not sure how Tori Amos managed to tell my story way back in 2007.

Surviving the Holidays

 A sense of panic starts to awaken around October, as Christmas decorations start furtively replacing Halloween decorations and the realization that the holidays are upon us. When you are chronically ill, the holidays offer added stress and panic. In the online communities I’m part of, I have already noticed the anxiety levels increasing with questions like “How will I prepare a meal?” “How do I get my house ready for guests?” “What do I talk about?” etc. My anxiety about the holidays started in September. Spoonies are great at finding solutions in difficult situations. We’re professional survivors, so I think it’s safe to say that we can find solutions during the holidays as well.

Holiday gatherings and parties are taxing for anyone, but for Spoonies they are especially challenging. For me, this year will be different. I’m not working and I have become home-bound. I have been able to do less and less over the years, but this year will be all about survival. My biggest concern is the New Year’s Eve party my husband and I always have at my parents’ house every year. Throwing a party is out of the question for me at the moment so my husband will have to do most of the work unfortunately, which he understands. Sometimes, this is reality. My goal is to be able to show up for the holiday gatherings and this party. If I can accomplish that, I’ll be over the moon.

Here are some suggestions to consider for the holidays and I would love to hear if you have other suggestions:

1.  Plan Ahead
I’m sure many of you are like me: I have a very careful plan whenever I leave the house and I try to prepare for all contingencies. This may mean bringing medication, mobility aids, fluids, etc with you.  If you are going to a friend or family member’s house, you may need to discuss your needs with the host or your family members. You may need extra care during a gathering but no one will know this unless you communicate it.

Maybe you’ll have to break up your preparations over a few days because you know that trying to do it all in one day will mean you can’t enjoy yourself or you’ll end up bed-ridden. You can even make a list or a plan for yourself if that helps.

If you have to travel, have your emergency supplies on hand with you. I have a giant purse that has water, salt, meds, and protein in it at all times. Prepare for the worst and hope for the best. You know how many spoons you have so conserve and use them judiciously.

If you are spending the holiday alone, as Spoonies must do sometimes, prepare to have a restful and enjoyable day. Do something for yourself and know that spending time alone means you can celebrate on your own terms and manage your health without extra stress or pressure.

2.  “What do I say?”: Listen

I saw someone mention this and I often ask myself the same question. I’m not working, I only leave the house for appointments, I spend most of my time managing symptoms, and I’m re-watching Downton Abbey for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you are with friends and family, but it does not have to be a focal point. You only have to discuss whatever you feel comfortable with.

Although some Spoonies do not have a vibrant external life, this often strengthens a person’s internal life. Whenever I think of this exchange, I think of Emily Dickinson. We still have much to share.

It can be difficult to not feel sad or even resentful when you hear others discuss working, traveling, or exciting social lives, but holding to this negativity will never lead to happiness. These feelings can take us out of the present and make us feel worse about our quality of life. I have found a lot of joy in just listening to others discuss what they are doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. This can make you more compassionate as well. Share your ideas and thoughts and enjoy listening.

3. Ask for Help

This reiterates the first point. If you know that an activity or condition will sink you, ask for help. Maybe you’ll have to delegate cleaning or cooking. Maybe you’ll have to explain your dietary needs. Asking for help is anathema to my nature, but I’ve learned the hard way that every time I didn’t ask for help when I should have, I ended up not succeeding.

Don’t set yourself up for failure. You know more than anyone else what you are capable of and your limitations so communicate this. Hopefully you have people in your life you can rely on and trust so you can communicate that this time of year is especially challenging because they may not know this.

I have a very specific diet, so sometimes I bring my own food or eat before a gathering. Maybe you’ll need to bring a chair to sit in. Do whatever you have to do. It’s easy to ignore our own needs to maintain the appearance of functionality or to not create distraction, but your self-preservation is the utmost importance. Going to parties and being part of celebrations is a rare treat for many Spoonies, so do whatever you have to do to enjoy it.

I’ll be bringing a blanket to our NYE party so that I can lie down in one of my parents’ rooms throughout the party because I won’t make it otherwise. I’m also going to adjust my medication schedule and hydrate all week to see if I can last for a few hours. I’ll put on a smile and do my best to enjoy it.

4.  Celebrate

Maybe the overwhelming stress, the sight of singing Santas, and having to hear Paul McCartney’s “Simply Having a Wonderful Christmas Time” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time to celebrate. Find something to celebrate, whether it’s spending time with friends and family, cheating by eating food you normally wouldn’t allow yourself to eat, or getting to wear something sparkly. Carve out some celebration and enjoyment for yourself.

I thought the last two years were difficult, but this year was the most difficult year health-wise for me by far, but I feel like a warrior for surviving it. I know that I can continue to survive it. That’s worthy of celebrating.

Even if you don’t have anyone or many to celebrate with, celebrate yourself. If you can't go to a gathering, you can celebrate on your own terms. You made it through another year of battling illness with dignity and grace. Your strength is worth celebrating!

I wish you symptom-free days, chocolate, and lots of joy for your holidays. How are you going to enjoy yourself despite your illness?