The past couple weeks have been stressful for me for a number of reasons and as expected, the dysautonomia has kicked up a few notches. Run-away blood pressure and pulse, alternating with extreme low blood pressure, dizziness, brain fog...the works (!) has resulted in my having to spend a lot of time in bed. It's disheartening because I felt I was getting stronger but the slightest stress or trying to push myself through one or two events can undo months of good.
Unfortunately, life can't remain even and stable all the time or even for very long. Stuff happens. So there will be setbacks. It has been over two years since I've battled my way through a severe episode that left me disabled for a while and now partially disabled. I talked with a friend the other day who has a daughter with POTS. She said it took seven years for her to finally reach a point of being able to live somewhat normally so there is hope. But it is a long, arduous, painful, and lonely journey with a yet unknown ending.
Throughout the trip, one thing I can always count on is three particular good old friends. I'm posting a photo of one of them below:
This guy is actually very old...14 years, which is probably around 100 in human years! But he is the sweetest cat we have ever had and I'm proud to say, one of my most faithful and trusted companions and friends. He actually exhibits empathy for our other cats as well as his human friends. When I am feeling low, he is always there, quietly but firmly at my side. He has some serious health issues of his own so we often hang out together. When I cry, he will sometimes reach out and put his paw on my hand. When I am lonely, I can count on him to stay with me. He is a true blue friend, and his indomitable spirit and persistence of being with me...even when I am very sad and sick and not very good company...warms my heart.
In the sometimes hellish world (or prison as some call it) of dysautonomia, I am thankful for the gentle and funny, sometimes annoying ...but always loving company of my three hair balls. They bring me comfort when I am hurting, they make me laugh when I cry, and no matter what I say, they listen without judgement. I love seeing their faces (as my husband will attest to the tons of iphone photos I am always sending him!) and they bring me joy at a time when joy can sometimes be rather scarce.
When you are feeling low and lonely, remember that friends can come in all shapes and sizes, ages, and even species. :-) They can come through twitter or facebook or "live" and be transient or lifelong. If you are reading this and feeling lonely, you can think of me as a friend at least in this moment and perhaps it will help get you through a rough patch to know that I understand the suffering of being chronically ill and you are not alone.
Offering comfort and friendship to all fellow dysautonomiacs and others with chronic pain or illness.
A collection of my personal musings and resources about Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hPOTS), a rare form of dysautonomia, a disorder of the autonomic nervous system. There is very little information about hPOTS available. I want to share my experiences, hear from others living with hPOTS and other illnesses, and provide a collection of resources as I find them.
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