Better get a cup a joe…it’s a long one!
I have written before about having a CSF leak, briefly. I purposefully have not gone into details about this illness for several reasons, the biggest being that I prefer to appeal to anyone who has a chronic illness, no matter the severity of symptoms or how long they have been enduring.
Today, I would like to address some coping strategies that I find helpful for dealing with my CSF leak but I can attest to the fact that they help in other circumstances too…so I will give a little background to how I decided on these FIVE tips.
- Get as dressed up as you can: when I was 26 years old, my mother was diagnosed with cancer. She asked me to come home (I was living out West in Canada and had just landed my first teaching job the day I found out) to take care of her as the prognosis we had been given was 3-6 months. I will not go into details about all the feelings and turmoil that existed at that horribly difficult time but suffice it to say that it was very challenging. I had a fantastic Family Doctor at the time, who insisted that I take a 30 minute appointment once a month to tell her how I was coping with all the tasks of dealing with someone who is dying of lung and brain cancer. I arrived for my first appointment dressed in beige suede shorts, deep black tights, and a gorgeous black ribbed turtleneck with clunky black heeled shoes and a simple gold bracelet and gold chain, both antiques given to me by my mother. (Listen, it was the 90s…you can believe my hair was still pretty BIG too)! I remember my doctor being so delighted when she saw me, exclaiming ‘Wow, Ingrid, you look so wonderful…good for you!…and how are you doing, really?!’ You see, she knew that I was dressing for the outside to help me with my insides…but she also knew that my suffering was still happening. She commended me for taking the time to help myself feel better about my situation. Today, with my CSF leak, I spend a lot of time in yoga pants and T-shirts, and there is nothing wrong with that at all. If it is the best I can look…then that is just fine. However, if I feel that maybe I want to put on a nicer blouse, or a pair of pants, or I want to paint my nails…those little things go a very long way to lifting my spirits just a tiny little bit. I do whatever it is that will make me feel my best. I have many times gotten out of bed, gotten into the shower, gotten right back into yoga pants and T-shirt but just blow drying my hair has made all the difference…even when I get right back into bed!
- Be honest and hang with people who can handle your honesty: I recently visited a friend who asked how I was doing. I hesitatingly responded with a drawn out ‘I’m Oooo-Kkkk’ and he responded ‘Liar!’ with a chuckle. I replied ‘Ok, busted…I’m still not well. Thank you for asking’. He proceeded to ask about my recent testing and we briefly talked about it before moving on to a different subject. Being chronically ill is such a tightrope. I don’t want to overwhelm people with the details of my illness, as it can be such an onslaught of information. (Not to mention that being cooped up all the time makes it all come out in a torrent of details and statistics). At the same time, I have to trust that real friends want to know if I am getting better and they are patient and caring and are really asking because they truly want to know.
- Do 1/2 as much as you think you can and 1/2 of what you feel: I wake up some mornings and although my head is splitting, I feel like I could tackle doing a tiny task. If I think I can be up for about an hour, I focus on trying about 30 minutes, or half of what I think. I decide that I will make lunch and research a quick recipe. As long as I can limit my up time to about 30 minutes while cooking, I usually can accomplish the task. But this is exactly when I need to STOP and go back to bed. Once I get started, I feel like I could plan to make dinner too. I lie in bed and look up another recipe and get planning and scheming for dinner…this is WAY TOO MUCH. I remember, years ago, when I was running 1/2 marathons, the author of one of my favourite running books Slow Burn: Burn Fat Faster by Exercising Slower by Stu Mittleman, suggested that the perfect run is when you are finished your scheduled run and feel that you could do that exact run all over again (but DON’T)! These are my exact guidelines in sickness as well. Doing a task that is hard for me (I know…preparing a meal doesn’t sound arduous but for me it can take all the energy I have) fills me with excitement because I feel a sense of purpose and become energized…but this is exactly when I need to STOP. Any regime needs to include steady guidelines for increasing activities and constant re-evaluation to be sure that I am using energy to my optimum potential. The price for overdoing it in my case is getting over tired where my head is so painful that the next day, I can’t get out of bed at all. Slow and steady wins the race! Be a turtle out there!
- Be informed and let others know too: in any illness, it is crucial, that in order to make decisions for your own care that you become informed about the illness itself. In the case of CSF leaks, it is very difficult to find information as it is not always readily available and doctors do not know how to treat them. The statistics surrounding CSF leaks are changing weekly, as studies and information become available. Go to reliable sources for your information. Read medical journals if you can or ask your doctor to tell you what they mean. Make appointments with professionals and share what you are learning. I made a realization recently that my doctor may not be appreciating all the information I was bombarding him with and so I solicited a professional to speak with him. This made a huge difference because they spoke colleague to colleague and made a plan for my care. Get onto forums so you can get the answers you need and guide your care accordingly. Inspire site is at www.inspire.com and has portals for any number of ailments out there. There is a group of very concerned and helpful CSF leak people there who can let you know about next steps for you. The real bonus for this group is that the administrators for the CSF leak page are very knowledgeable and very helpful in terms of directing you to accurate information and journals you can read. There are Facebook groups for CSF leakers. They are private so all you have to do is type in CSF leak in your query box on your FB page and once you find the page, ask to be added. These groups are private as folks don’t always want these discussions out on their own pages (check out CSF Leaks Canada, CSF LEAKS, and CSF cranial pages). Also, there is an information and charity driven page from the UK dedicated to CSF leaks called CSF Leak Association that you can find by clicking here. They have a quarterly publication with information and they sell items in an effort to support those with CSF leaks. Finally, the Spinal CSF Leak page is filled with information regarding diagnosis, treatment, and is a font of knowledge where CSF leaks are concerned. Watching the videos is a MUST if you would like answers to your CSF leak questions and as it describes, Dr. Connie Deline is an advocate for all matters CSF leak but is also a sufferer so she really understands the need to get the word out there so you can tailor-make your own success story. Recently, too, Dr. Connie Deline has arranged for a Spinal CSF Leak link to be added to a portal called The Mighty…stay tuned for stories to be added to the page.
- HOPE: read success stories…tell success stories. I read about another person with a CSF leak this morning who was just diagnosed after having the exact same diagnostic test that I just had in October. She had had the test administered 3 times only to be told the test was negative. On this 4th attempt, due to the doctor performing the test TO THE LETTER…he was able to accurately identify that she is leaking CSF fluid from her sinuses (a cranial CSF leak). For the reader, and fellow sufferer, this can feel devastating because you still sit with horrible symptoms and are still gravely ill. For me, however this was a HUGE symbol of HOPE! There she was, years into her ordeal, and she tested positive! Wonderful! Because now the entire community has more answers than we did ONE DAY AGO! To me, this was a win for all of us!
I hope you find whatever works best for you in your particular situation. I hope you find healing and health.
Love Ingrid x
#loveiseverywhere #csfleak #5Steps #facingchronicillness #chronicillness