Staying Sane with
Chronic Illness
by Claire Martin
Having dysautonomia can mean that you need more rest and require recovery time from activity. Therefor, you end up being stuck indoors quite a bit more than the average person. This is true with many chronic illnesses, especially when you are in a particularly bad flare that leaves you struggling with daily activities, or just plain too sick to leave the house. Even if you are not mostly/completely bed or home bound (such as myself), you may be severely limited by your illness from time to time, and going a bit bonkers or getting antsy.
So how to stay sane? Most of us prefer to avoid an institutional room with padded walls, even though the padding would be great in case of random face planting, tripping, or "needing-to-lie-down-fast" incidents.
Here are a few tips to hopefully help find some balance, improve mental peace of mind, and make the most of your indoor time:
1. Get online and find support:
This has been the biggest help for me personally - finding Facebook groups, blogs, Twitter friends, and awareness groups with forums like DINET. Talking to and meeting others who deal with the same unique issues that we all face, and just knowing you are not alone is amazing and can calm many anxieties. (Add yourself and your online identity to our map and see who is out there.) Sharing local resources can be helpful for your medical treatment as well, so knowing a few folks nearby who have tips on where to go and who to see is useful. Many people are just waiting to get an email, a Facebook message, or a Tweet from someone who can relate. Talking to others online can also alleviate the need to vent to your family and friends as often who may not understand or be as sympathetic.
Do be smart and careful though, and use caution when meeting people
or disclosing info online, especially on public websites. There are predator
s out there, and some people or groups may even add more stress to
your life. The best online support is safe, drama and stress free!
2. Pass the time constructively, with things not related to your illness:
It is very easy, and frankly fairly normal, to become completely immersed in the world of chronic illness, especially when first diagnosed. Spending hours online reading about your condition, and spending all your time in those helpful support groups mentioned above can sometimes cause an overly focused "I am sick" mentality. Yes, you may be sick, but YOU ARE NOT YOUR SICKNESS. It is a struggle you are overcoming, but don't let it become your identity. As with anything in life, balance is the key to maintaining mental health and happiness. When feeling well enough, take the time to do enjoyable activities you can tolerate that are not related to dysautonomia (or any other condition). I find that if I lie around just feeling sick, it gets very depressing. Sometimes we have no choice, when our body decides to shut down. But, many times, I find I can still do something, and it takes my mind off being sick and helps me feel productive.
There are many cheap, easy things that can be done while resting or in a reclined position, or during a stay in the hospital. Here are a few to get you started:
-crocheting & knitting (my new personal favorite)
-painting, even by numbers!
-reading
-coloring (that's right, crayons and all!)
-crosswords and puzzles
-if you have a smart phone, there are tons of free app games
-make your own jewelery
-take a free online course (Coursera is great for this!) and
learn a new skill or topic you are interested in
-interactive video games
-scrapbooking/collage-ing
-writing poetry
-check out Pinterest for more craft ideas!
3. Help others:
Relying on others constantly for support can be draining on your self esteem, especially if you have lost some of your independence. This makes the "productive member of society" thing kind of tough. In my opinion, the single most gratifying thing we can do is help others and feel there is purpose in our lives.
There are many ways to volunteer and help others, even if you are stuck at home. With the internet improving how connected the world is, you can volunteer to help an organization on the other side of the world. Organizations that are nonprofit and volunteer run (like Dysautonomia SOS!) are always looking for help with blogs, social media, contributing to a support group or newsletter, etc..., which can all be done from a laptop on your bed. If you are mobile enough, there are countless local organizations all over that could use even an hour of help a week. Many are flexible, and if you disclose your health situation they will work with you, and, most likely, be grateful to you for offering your time and energy.
You can even start a blog for free (Blogger or Wordpress are the most popular), related to your condition or something else you are passionate about, and you may be shocked at how much you impact other people's lives. I started STOP POTS as a way to kill time and try to put my science writing background to use, and it has turned into something much bigger than me now. I take great joy in meeting and working with the incredible people who have reached out to me through the blog. Also, it's extremely therapeutic (for many) to write.
Volunteering takes the focus off ourselves, and is a constant reminder that there are many people WAY worse off than us. This is not to minimize your struggle, but focusing on and being grateful for what we do have can be a reality check and help maintain a positive attitude during tough times.
4. Get dressed:
Just the act of getting dressed, putting on some make up (if applicable), and maybe
doing something wild and crazy to your appearance can be therapeutic. I dyed my
hair a crazy shade of maroon (it was supposed to be purple-ish, but my hair had
other plans) when bored one week. The act of dying my hair left me bed ridden for
days, but was totally worth it. Since I am no longer working in a professional
environment, this was a silly, but extremely empowering thing for me to do.
Taking the time and expending the energy to put on real clothes, and maybe even some makeup - even if I'll just be lying around the house - makes me feel less sick and more "normal". It also shows that we are worth looking fabulous, even when home alone. This can have a huge positive mental impact, and keep away the "I'm sick" blues. Some of my favorite online dysautonomia friends have been known to wear capes, superhero masks, and sparkly shoes while in bed. It's fun, silly, and empowering.
5. Make your environment the most comforting to you as possible:
This has different meaning for different people, depending on your personality and mobility. If you are primarily in one room, try to get help, or do a little every day, to make it the best, happiest, coolest, most peaceful, fun (or whatever adjective works for you) place possible. Some people like zen, some like organized, some like lots of greenery, some like wild and crazy colors. Make your favorite or most used space the most happy place you can, so you can literally go to your happy place. Consider creating an outdoor space, even a porch, that you can sit in comfortably. Being outside is peaceful for many, and having an outdoor retreat to escape to may help alleviate the antsy feeling that comes with long periods indoors. Hospitals now are incorporating this, and creating gardens and courtyards that patients can be brought to. During my last few week stay recently, it was amazing to have a courtyard to be wheeled to with pretty plants and to be able to "escape" the hospital for a bit.
I personally love bright colors, greenery, and for things to be organized. I had to explain to my husband why the chaos of having drawers left open or things not in piles drives me nuts, as I'm very visual. I need to be as un-nuts as possible, and boy, is he is on board with that! I was stuck in a hospital for nine months during my longest stay to date (hopefully ever), and was very stressed out by the constant white walls. The artist in me loves color, so our home is painted with bold bright accents. This may be stressful to some who like zen neutral colors, but it calms me. Point being, find out what works for you and surround yourself with what you love.
Find and create your happy place! The above pictures are from Pinterest (I wish they were of my home!).
*If you are feeling especially down, depressed, or having trouble coping with being chronically ill, please seek professional help from a licensed Therapist or Psychiatrist. It is completely normal to struggle with adjusting to "a new normal" and a mental health professional may be able to help you learn new coping skills and treat more serious mental illness. Find links to resources and information HERE.
Do you have any tips to help others stay sane while battling chronic illness? We would love to hear your suggestions!
-Claire Martin
Claire is the President of Dysautonomia SOS, a former research scientist and writer, and a patient. This was adapted from a piece she wrote that was featured on the blog Living with Bob(Dysautonomia).
