August 2018 Linkup Party for People with Chronic Illnesses
It’s been a while since I’ve participated in A Chronic Voice’s Monthly Link Up Party. Her prompts this month are perfect for joining in the fun after several months of absence.
Sheryl’s prompts for the month are: Figuring, Completing, Boring, Cuddling, and Chatting, so here are the brief notes I’ve made for each header section for this article.
- Figuring out that I need to let more things go in my life in order to heal and have less stress in my life.
- Completing my art and reading challenges for each month.
- ‘Boring’ is a negative word that I try not to use in my day to day language, despite the fact that being sick can be incredibly boring.
- Cuddling has many benefits for those of us who are chronically ill. Whether it’s with a loved one or a fur baby, cuddling can make your day much brighter.
- Chatting – Where would we be without good friends to chat to on lonely pain-filled nights when painsomnia has taken over?
I recently came back from a trip to my home country – Canada. While I was there, the first three weeks were very restful and peaceful. I didn’t do much, so I had plenty of time to sit and think about what my next steps are going to be on this chronic journey of mine.
Unfortunately, my last week in Canada ended up being a bit of a bust from an acute flare that came on very quickly and with no warning. I’ve had plenty of time now to sit and think more about these prompts and about what happened while waiting for a little bit of energy and strength to come back to me.
Travel always makes me introspective, especially when I’ve traveled home for the first time in two years. I haven’t been allowed to travel for the past two years due to my chronic illness issues, so I was extra contemplative during my time at home. About two weeks into my stay at our cottage on Lake Nipissing in North Bay, Ontario, I really started to think more about where things are heading.
Having the input of my family as well, who have watched from abroad as I’ve gone through the last two years without family support anywhere near me, has really helped. Rather than texting my mom or talking to her over the phone about what has been happening, she was finally able to observe how much my life has changed since the last time I was home in August 2016.
As I’m getting ready to switch doctors and work with a new rheumatologist, we took the opportunity as a family to discuss their observations of me and my daily challenges instead of talking about it over the phone.
I figure that it would be better to have my own written daily observations (my pain journals, photos, and hospital notes) reaffirmed by my family, who also had some significant input to give to my new rheumy. They thought of things that I hadn’t thought of adding to my list simply because they were able to observe how I move each day and how am I am feeling.
After three weeks of rest, I also realized that I need to slash more from my day to day activities, so the fundraisers that I’ve participated in for the last eight years and some other activities that seem to affect my health in a negative way – I’m ready to let those things go now.
The other way that Figuring came into play while I was on vacation was in the shape of hope. I felt so good after resting for three weeks, I was thinking of all the things I’d do when I got back to Taiwan. I figured that maybe the rest, fresh air, and sunshine had made me feel better and stronger, and my hopes were raised. Then I crashed again with no warning.
I admit it – I convinced myself that things weren’t as bad as they had seemed and then my body smacked me right back into place with an acute flare-up that left me weak as a kitten.
So there was my answer: I need to stop and I need to fully embrace the fact that I am a professional sick person.
One of the things I’ve really enjoyed doing in 2018 is completing my weekly art and reading challenges. From Ikebana and simple flower arrangements to tackling art projects that range from working with fabrics to coloring, painting, and working with different materials, I can honestly say that completing my challenges each month is really empowering for me.
Despite being so sick each month, I can now look back at each month and say that I made these things while I was resting in bed. It was one of the best decisions I could’ve made for my health at the beginning of this year.
At the beginning of 2018, I wrote a post called Clearing Out: Letting Go Doesn’t Mean Giving Up. Essentially, this post was about the efforts I made in 2017 to reduce what I was doing to alleviate stress.
I spent most of 2017 clearing out our home of everything I can’t use anymore. High heels, party dresses, sports equipment, and all the extra stuff we have accumulated in Taiwan since moving here in 2006. If I couldn’t use it, we got rid of it. I also got rid of certain elements of my life that were causing me stress, including ‘friends’ who couldn’t accept my illness and activities that were using up my precious energy supplies.
It took me all of 2017 to empty our home of everything we couldn’t use again. At the beginning of this summer, I realized that I had to let more go, so I made a list of everything that I was still trying to accomplish and let it go. I just completed that list and was pleased to find out that there were still things in my life that needed to be left behind in order for me to move forward and begin new things that don’t require such a huge energy output.
Life as a professional patient and bed sitter is boring! I can’t think of one friend who is chronically ill who would disagree with that statement. I could go on and on about the trials and tribulations of being sick 24/7, but this is one of about a dozen words that I try not to use when I am speaking about my illnesses. Boring is a negative word for me and when I start using negative language like this, I feel anxious and sad.
If I were not bored, though, I never would’ve found the time to read so many books, work on so many different styles of art, or connect so much with others. Hit me up on GoodReads if you’re interested in seeing what I like to read about. I’m very active there, and I have an excellent book list there on health and chronic illness issues.
Additionally, whenever I let my mind go to that place that says, ‘Wow, I’m bored!’, I try to remind myself that there are others who have it far worse. Stephen Hawking comes to mind immediately. Hawking proved that boring goes only as far as we let it go, and that by exploring the limitless options of our minds, we can live full and productive lives.
Stephen Hawking on Being Disabled:
“If you are disabled, it is probably not your fault, but it is no good blaming the world or expecting it to take pity on you. One has to have a positive attitude and must make the best of the situation that one finds oneself in; if one is physically disabled, one cannot afford to be psychologically disabled as well. In my opinion, one should concentrate on activities in which one’s physical disability will not present a serious handicap. I am afraid that Olympic Games for the disabled do not appeal to me, but it is easy for me to say that because I never liked athletics anyway. On the other hand, science is a very good area for disabled people because it goes on mainly in the mind. Of course, most kinds of experimental work are probably ruled out for most such people, but theoretical work is almost ideal. My disabilities have not been a significant handicap in my field, which is theoretical physics. Indeed, they have helped me in a way by shielding me from lecturing and administrative work that I would otherwise have been involved in. I have managed, however, only because of the large amount of help I have received from my wife, children, colleagues and students. I find that people in general are very ready to help, but you should encourage them to feel that their efforts to aid you are worthwhile by doing as well as you possibly can.“— From “Handicapped People and Science,” Science Digest 92, No. 9, September 1984
Because of allodynia, I don’t usually enjoy cuddling unless I’m feeling okay, but I love holding hands, especially with my hubby! It makes me feel safe and content.
What helps most when you’re in pain and feeling scared and sad? A hand to hold! It’s a precious thing for all of us, not just to those of us who are ill.
I also love cuddling animals, especially my cats! Bijoux is three years old and she loves to cuddle. She’s very gentle and seems to know instinctively when she can play with me and when she needs to chill out.
Last week we introduced a new baby to our home, Daenerys – a jet-black kitten with a feisty personality who adores cuddling. Both my husband and I love to settle in for the night in front of the television with our babies on us.
Where would we be without good friends to chat to on lonely pain-filled nights when painsomnia has taken over? I can’t always count on my husband being awake at 4am to talk to, but there is always someone in my online support group to chat with.
Chatting via social media or through text is a great distraction technique, and of course, nothing beats picking up the phone and calling mom and dad or a special friend when we’re feeling really down and out. Chatting with others also allows me to gain different ideas and follow different perspectives about my illnesses.
Many thanks to Sheryl at A Chronic Voice for giving me such great writing prompts to work with this month. I greatly enjoy these link up parties, and I hope I can participate in more of them. Click here to see the other entries for August 2018.