As I was thinking about what I wanted to share on my 2 year Sepsis Anniversary- I started having some very dark thoughts. I started listing everything I’ve lost since 2 years ago yesterday. It made me extremely depressed. I realized, I needed to share the dark, as well as the hope.
Of all the things I’ve lost-my ability to walk more than several yards- possibly, 1/4 of a mile, without excruciating pain that often lasts for days – this is the one that is the VERY, VERY hardest for me. The night before Sepsis-was the very LAST time I was able to fully exercise- 6 miles after dinner. (Lack of blood flow- lead to 10 torn tendons in my legs and feet).
The ability to drive – I can’t concentrate well enough to merge- or sometimes, how to get home – not to mention the below mentioned dizziness.
2020 presented a whole new set of problems- bones breaking spontaneously. In addition- falls and dizziness. It seems that calcium likes to hang out in my blood and not in my bones.
Maybe the hardest is the emotional side- as in- I’ve lost the sense of a future and my self confidence. I was born with confidence- it’s hard to lose it.
I’ve spent at least 2 days every week since early May at Mayo going through testing and consultations. I have lots of answers- but plenty of questions left. I see my orthopedic Dr on Monday- and I’m prepared to BEG him for an operation that he claims is too risky for me. I’ve decided I’m willing to take the risk, because I want my life back. BUT……….
There’s more- but, I have to face the reality of this life.
Of course- all of this is happening to me personally, while people all over the world are dying, losing their jobs, and their own sense of life and a future. It’s hard to focus on me, when my heart is truly broken by our world and it’s circumstances. I mentioned in a previous blog- that I often bury my face in my hands and just cry. That hasn’t changed at all.
For the past 2 months, I’ve been really fortunate to have won a free package of health coaching sessions from my health club. They picked 5 people based on answers to a questionnaire and a short phone interview with the coach. The coaching sessions have been much more helpful and insightful than I ever hoped they could be. My coach studied at Duke Integrative Medicine, Mayo Center for Resilience and Wellbeing, and U of MN Center for Spirituality and Healing. She definitely has all of the bona-fides.
I had ‘homework’ after every session. I always looked forward to getting her questions answered. I learned quite a bit about myself that I previously took for granted- or didn’t really own up to. One of the big take-aways was that I don’t allow myself to feel the gift that being a patient advocate is. When someone thanks me for help- I seldom know how to take that as a compliment or as a GIFT. So, the next time, you thank me for help- please make sure that I realize the GIFT you just gave me. Coach helped me set some goals- the type I’ve not set for myself in the past. She also taught me some new breathing exercises (which I’ve always done). These are a bit more involved – and really help when I find myself agonizing over the state of the world. She reinforced something my Mayo Drs always tell me- I’m too hard on myself. Just BREATHE.
It’s been goal setting week in my head- I programmed a VERY SHORT physical therapy program to music (like when I used to teach- but with an iPod instead of a cassette tape). It only lasts for 7 minutes- my hope is to start small and work up to the same program several times/day. This ALL depends on my appointment with my orthopedist on Monday. But, I will do SOMETHING – even if it’s simply sitting and breathing.
So- I will continue to work on ACCEPTANCE and GRATITUDE.
In the words of Michael J. Fox- “Acceptance doesn’t mean resignation; it means understanding that something is what it is.- and that there’s got to be a way though it”
If Michael can do this- so can I.
Thanks for reading this- I needed to get it off my chest.
Hope to write again in 1 year.
Later
C
6 Comments
Thank you for sharing this and being totally honest. That’s never easy.
Thanks Anne. I appreciate your comment. Now, I’ve learned additional deep breathing techniques-in case Nancy ever needs my help again.
October 13th, (a Friday in in 1917) will be my 3 year anniversary of sepsis invading my life. I totally lost my ability to speak, if I laid down, I stopped breathing. I could barely breathe upright. Pulse ox would drop into the 50’s. I still have trouble breathing, walking is a real trial with a great deal of pain. But losing yourself is the hardest part; I used to be busy, active and involved. I am not anymore, even after a long stint in Pt and therapy. Of course, a pandemic and ongoing health issues make it much harder. But I refuse to give up, I just have to go a little slower, choose more carefully what I can do with my life, and accept the downtimes. Carol, thank you for sharing, there is strength to be found in each other.
Debra,
Anyone who has actual septic shock know exactly what we are referring to. I never tell the full truth-here, or to myself. It’s so hard to suddenly live a life that is a full 180 than it was the day before sepsis.
Hugs, my friend
I don’t even have a diagnosis for my problem…just a guess. How and where can O go to learn what I have and find out if what you are talking about has any chance of working for me?
Anne, I’m not sure what you are referring to. If you can clarify- I might be able to help.
I can provide links and ideas.
If you don’t want to share publicly- my email for Biotekrx is ckmiletti@icloud.com