NOTE: I wrote today’s piece as a submission for the 'Patients For A Moment' (PFAM) Blog Carnival and I was chosen to be included! You can read all the blog carnival submissions written on this theme by going HERE.
Looking ahead to the holiday next week: I will write Tuesday-Newsday as usual and then instead of posting on Saturday, I will put up a Thanksgiving blog post on Thursday.
* Taking a Swing at Life’s Unexpected Curveballs *
Today I’m writing on this theme set up by the PFAM Blog Carnival:
“When you have made some sort of peace and are coping with the chronic illnesses you do have and ‘life’ throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?”
I look at this premise in two ways: How do I handle it when new symptoms occur and upset my carefully balanced life and how do I react when I get a completely new condition lumped on top of all my other chronic illness issues? I’ll start with the first one...
Whenever I have a new problem like pain in a place I didn’t have before or physical difficultly doing a certain action, I start out with the sincere hope that “It’s just temporary. Surely it will go away in a day or two.” And with that thought in mind, I then manage the symptoms the best way I can such as applying heat, taking anti-inflammatories, or doing doing a light pool work out (I absolutely cannot live without my daily deep water fitness routine). I also make sure to write down all the details regarding the new symptom in my Chronic Illness Journal, so I can track it over time. I take whatever steps are necessary to alter my life so I can function, and try to rebalance how things were working before to accommodate this temporary hitch.
However, if after a few days I’m still suffering from it, my mind starts to play tricks. One of the things it’s best at is catastrophising, which is “Fearing the worst and fretting about it, often to the point of severe anxiety.” My therapist used to tell me that I could write medical horror stories because I was far too good at catastrophising. I have to fight against myself not to think I am going to have the worst possible outcome: such as, I’ll need to urgently move because I can’t use a wheelchair in this small apartment because surely it will get to the point where I can’t walk at all and I’ll be in constant unrelenting pain. What I have to do is mentally shake my brain and make it stop, remind myself I have no proof the worst will happen, and force myself to focus on taking steps to deal with the problem as it currently is in the moment. And if it *does* get severe, to tell myself I will deal with that as it comes, using the support around me.
“A great part of life consists in contemplating
what we cannot cure.”
~Robert Louis Stevenson
I’m getting better at staving off catastrophising, thanks to the cognitive behavior therapy I learned from my therapist. It can also help if you do meditation, tai chi, or yoga - something which requires a lot of calm focus. You can use distraction techniques when your fear and anxiety are high: read a book, watch a movie, talk to a friend, cuddle a pet, etc. Also, taking a positive action can help you feel more in control. Keep updating in your Journal, making fine distinctions between how the new symptom acts, if it gets better or worse when you do certain things, get very descriptive. This can really aid your doctor when trying to diagnose and treat it effectively, and could reduce the time it takes to get the symptom managed or cured.
As for getting a whole new diagnosis dropped on you when you least expect it... here’s my story:
I was enrolled in a study at the National Institutes of Health (NIH) in Bethesda, MD for people with my type of genetic collagen disorder. Currently the majority of my symptoms revolve around my joints and muscles, including severe pain, subluxation / dislocation, mobility issues, spasms, and more. A few weeks before heading to NIH for my annual check-up I got a very weird but non-painful symptom. I started producing breast milk - and I’ve never had children or ever been pregnant! I saw my HMO gynecologist who didn’t seem to take it too seriously. I tried to ignore the problem but it was awfully messy at times. At NIH, I mentioned this odd symptom and they were very concerned. They didn’t say what they suspected but I could tell this was not just a silly body thing. After a bunch of tests they told me the news: I had a brain tumor.
A brain tumor! I was in shock. I hadn’t expected anything like this! Luckily my husband was there with me to help listen, because I was so numb I missed some of what was said. It’s a very tiny tumor attached to my pituitary gland where the female hormones are produced. It was impractical to do a biopsy, because the gland rests in the brain behind the nose and eyes. They tried to reassure me this type of tumor is usually benign. If it did grow, it might need to be removed because it could further affect my hormones or overtake my optic nerve. Surgery would mean pretty much going right through the center of my face.
My mind was whirling. I could have brain cancer. I might need surgery which would affect my facial appearance. I could go blind (well, that could happen from my genetic illness, too). I was too shocked to catastrophize much beyond those simple thoughts. The next day the doctors sent me home with a prescription for a chemotherapy drug to see if it would stop the breast milk production and maybe shrink the tumor. Immediately I started to think, “Chemo will make me throw up! I’ll lose my hair! I’ll be too weak to function!” I decided to wait...
...until I returned home before taking the first pill. I was so scared and freaked out when I did, so convinced it was going to be awful. I think my worry and stress affected me more than the side effects I had, which were mild dizziness and nausea.
After a few weeks, the breast milk stopped. I was allowed to stop the drug after about 3 months and the milk didn’t recur. At the six month mark we repeated the brain scan and found the tumor had slightly reduced. All my doctors told me that things looked good and we would track the tumor every two years unless I had any new symptoms. I also get a peripheral vision test once a year to make sure my optic nerve isn’t being crowded.
Over time my emotions and fears have eased some - it’s tiring to remain keyed up and anxious all the time! It’s hard work and I have enough on my plate on a daily basis. I guess that I’ve been able to compartmentalize the tumor and only worry about it when it is time for another scan. I’ve used all the techniques mentioned earlier when anxiety has flared up, but I won’t lie and say there haven’t been sleepless nights or depressive streaks. When you have chronic pain or illness, it’s inevitable.
The key is not to let worry overwhelm you, to find ways to relieve it that are distracting or positive, and just focus on your day-to-day living. Try to handle what comes up as sensibly as possible and if you feel you need more support, then do as I have and seek out a therapist or support group. I know I wouldn’t be where I am now if I hadn’t gotten the therapy when I needed it.
Don’t let yourself fall into unhealthy habits as a way to control fear or depression. Avoid smoking, drugs, drinking, risky behaviors, eating disorders (this was my bad coping mechanism and it took a lot of struggle to get my life back), etc. Those types of coping will exact a heavy price for the temporary relief you feel when you use them. In the end they can take more from you than your chronic pain or illness ever will.
I send all of you my healing thoughts and pain-free wishes!