Defeated today

Good morning, @ausableriver. Oh gosh, I know that feeling of defeat when we realize we’re not super human after all. Blood conditions can really clip us right off at the knees and don’t play fair. As much as we want to keep life to absolute normal there will be days when your body will tell your brain, “Not today, sweetheart! I have other plans for you.” Those are the days you listen to your body and get the rest you need.

As a strong and active person, listening to your body will be one of your biggest challenges. But it doesn’t ever mean that you’re weak or giving in. We all have sucky days and it’s ok to give in sometimes. I don’t have PV but I did have acute myeloid leukemia and a bone marrow transplant. I’m coming up on my 4th rebirth day and feel really good. Cancer is in remission and I have lot of energy. But wow, every once in a while, when I have done too much physically or even mentally, I am wiped for the next few days. Maybe it’s my age or maybe it’s me just being human instead of a bionic woman, but i can’t help feeling a touch of anxiety on those days.

I wear mild compression stockings. Not TED stockings which are very tight. I’ve gotten compression sleeves that athletes wear for running. They’re not super tight but are supportive enough to keep blood from pooling. They also help keep my legs feeling energetic on days where I’m sitting or on my feet for an extended period of time. I also have other mild compression socks that have cute designs and colors that and are fun to wear and don’t look like ‘medical’ stockings. Shudder…I’m pushing 70 but don’t want to look it. ☺️ Some medical supply stores have them but honestly, I shop on Amazon where there’s quite a big selection.

Other members with PV who might be able to give you some personal insights on what to do when you’re having a really compressive PV day are fellow members
@yitz @jjdownes01 @albertedward @dale1k @treeore @jerrlin @casevin7 and others in this conversation regarding PV and fatigue:
https://connect.mayoclinic.org/discussion/pv-and-fatigue/
I know this is all very new to you and quite frightening. If I remember correctly you’re still waiting for a firm diagnosis with your PV and aren’t on any treatment. Do you take a daily baby aspirin? You may also want to call your doctor’s office and let them know of your symptoms. They may get you in for a phlebotomy to remove some of the excess blood which can help get your numbers under control. Have they mentioned that to you yet?

Thanks...my office is very understanding and allowing me to meet virtually today. That "ok" alone helped me feel better. I will try some compression. And, yes - the clinic said they would call me if I needed phlebotomy prior to my next appointment which is week after next. They pulled samples last week that were not as bad as prior samples - but waiting on the Mayo lab results for final, final. They have not called me, I guess I'm assuming they have looked at the CBC and would have called if I needed it. I really think much of what is happening is just that darn fear of not knowing and letting the worst-case scenario fill my thoughts. Almost as soon as I receive the approval to not make that drive and sit in a meeting room - I felt instant relief. Today my negative demon is myself. I need to learn to listen to my body and brain - both with equal attention so it's not such a dramatic event putting me into tears.

And happy re-birth day!!

Anxiety is is the worst, isn’t it? We can get ourselves so worked up, especially with ‘what ifs’…
I’m relieved to hear you’re feeling better after making some changes in your schedule today. It gave you a sense of control for the moment. You’ve only recently found out about this diagnosis so it’s fresh and leaves you filled with uncertainty. It also has you feeling that your once totally dependable body has failed you somehow and that can leave you feeling out of control. Little by little you’ll reclaim your life as you learn that these awful days pass and tomorrow starts fresh. You’ll learn to read your body and to make adjustments. And some days you’ll wake up and think, “What fresh hell awaits today?” ☺️. That’s meant to be more of a joke. Did you ever watch Fraiser with Kelsey Grammer? He used to say that on the show. My husband and I laughingly use that phrase pretty often. Keeping a sense of humor helps with that positive mental attitude.

Another new member just signed on yesterday with possible PV. I think you two should meet… @rhiannon is just in the process of being diagnosed and sharing some of the similar symptoms with you.

Generally you will hear from your doctor if your blood tests warrant a phlebotomy but it wouldn’t hurt for you to give them a call for peace of mind. ☺️

Thank you! I get 2 birthdays every year! ☺️

Working so hard to remain positive is exhausting. I know from experience. I had a difficult 2 months in dealing with a recent diagnosis. I am also a stage 4 cancer survivor--so far cancer free the last 10 years.
When I work hard to remain positive I have found that exhaustion does not help but hinders progress. So I take small steps. Those small steps are hour by hour. These include taking time out for myself. I joined the local library and read. I suggest Jerome Groopman "Anatomy of Hope" which is one that I finished recently. I also have created a quiet corner in my home. When I am feeling anxious or stressed I go and sit. I meditate, read , or listen to music. Usually in less than 15 minutes I can relax and carry on my day. Another suggestion my passwords are all about strength and hope. This helps keep me centered when I log in.

thank you @girlugo23! Love the password idea. Do you have a sedentary job. Right now I'm so anxious that I have my alexia sounding alarms to get up and move around. Love the positive password idea - because it's time to change them all. Hugs to you with new DX and being a 10 yr survivor! I look up to you 🙂

Thank you --to keep me up and moving a make a list of odd jobs--such as cleaning out one or two drawers, short walk around my yard--dusting--I also have several plants that I shine the leaves. I also have friends that are positive. I rarely associate with negative people. Negative people just pull me down.

Just one moment by moment, one step at a time, one day at a time. You are doing great. Remind yourself of this. You are only human and doing the best you can. You are enough for this task and yet, can still seek assistance from others. It's a win-win.

Wow, that's a lot. Sorry I don't have any helpful info., maybe a google search? Sounds like you need something positive/fun. Is there something nice you could do for yourself...perhaps a nice meal and a good book/TV show to get lost in...wish you all the best.