Acceptance or defeat?

[Pistol]

Hi - I have a question: I am disabled from POTS for many years. Initially I went through all of the stages of grief and had resigned myself to the fact that this is a chronic condition. However lately the symptoms have become unbearable since they affect so many body systems: GI problems, bladder, pain, memory and concentration, fatigue, sleep disturbances, depression, anxiety ... you know. Plus I will never get better due to the nature of my POTS type as well as my age ( 51 ). So now I find that my previous acceptance has changed to resignation and defeat. Although I still do what I need to keep from developing flares ( exercises, diet, fluids, rest etc ) I really don't feel motivated because this is as good as it gets. Don't get me wrong: I am happy and feel blessed with my family, my life and the people in my life, I laugh despite of POTS. But many times I feel like I was cheated out of something, that I could have been so much more useful if I was not sick. -- How do I get back to the point where I just simply accept this condition and go on with my life without being resentful? 

 

[Bluebonnet08]

I know what it's like to feel this way.  However, I have reminded myself that as hard as it seems, no one can predict the future.  There is research going on in the field of dysautonomia and some people do find their root cause, which can sometimes be treated directly.  I know it's easier said than lived, but that is what I keep striving for.  I have not found my "root cause" yet.  I have been ill for 13 years, since I was 22 years old.  It's been a battle, a long road, but I am still going to fight.  It is frustrating to see other healthy moms so easily doing what I cannot, it's hard.  Yet, we never know what others are going through either.  

I truly, truly understand where you are coming from.  I try to keep my focus on "the next steps"... for me that is seeing two new specialists after I finish my pregnancy.  I've decided at this point, I will only see those in the top of the field, regardless of what that takes.  I try to write down my symptoms and address them one at a time.  One of the most important I've found in managing the emotional aspect is sleep.  Before I was pregnant I took a "deep sleep" herbal supplement that helped.  It was the only thing that helped me so far (along with magnesium at night).  

I honestly think it's okay to feel resentful sometimes.. it's okay to embrace what you feel... this illness is HARD.  However, I don't think age or anything else is nessacarily a barrier to getting well in the future.  You never know what will happen that could create improvements or even full wellness for you.  As my husband says... nothing is possible until it is!  I think about a disease like B-12 deficient anemia in the early 1900s... people used to die from it, but they discovered the root cause and now people can just take a vitamin and survive.  Things change all the time in medicine and treatment.  Sorry if this is a little all over the place.  I have the same thoughts and feelings as you, but just remember that you don't know what the future will hold

[p8d]

Oh I hear you Pistol.  I’ve “only” had full blown POTS for 3.5 years but like you am older, 56.  I am disabled and despite doing everything my Drs and physical therapist tell me to do I am wildly unstable and housebound.  I feel cheated sometimes because I finished my PhD 2 years before I got sick and had research plans.  My husband and I had narrowed plans to retire to a few locations and then travel the world. Now we can’t move away from my specialists and I can’t ride in moving vehicles a few miles to friends houses even if I had the energy.  Yes, I have lost a lot but I am frequently happy.  I had a wonderful life of teaching, traveling, gardening and dogs and I try to remember that.  My husband is amazing (most of the time 😉) and I still have dogs and can occasionally do a few things in the garden.  I am thankful that I got so desperately ill at 52 because it allowed me to do many things beforehand.  I try to focus on the things I have now and as Bluebonnet says hope that some researchers somewhere will figure it out.  It would be awesome if that were soon.  I also get a free pass to sit and read, my passion, whenever I want.  When I am down I read Toni Bernstein’s book How to be Sick.  Don’t get me wrong, I am terrified of getting worse as I get older and do contemplate what I will do at that point but I am not there yet.  We are not alone and I find comfort in that.  Feel free to pm me whenever if you want.

[Pistol]

Hi - @Bluebonnet08 & @p8d - thank you so much for the encouragement. I have never thought about the possibility of research opening up new cures in the future, I guess that is where the defeat comes in. I will try to look forward to new things to come! And with that said - I am thankful to all those physicians who give their careers, time or interest to solve the many problems Dysautonomia patients face everyday.  For now I am grateful for my docs and this forum ( and friends like you ). 

[Lainy]

2 hours ago, Bluebonnet08 said:

One of the most important I've found in managing the emotional aspect is sleep.  Before I was pregnant I took a "deep sleep" herbal supplement that helped.  It was the only thing that helped me so far (along with magnesium at night).  

Sleep is so important for mood! Can I ask what that supplement was? I'm really struggling with insomnia and I'm so hyper-sensitive to prescription drugs they're hardly worth taking. 

I've been struggling with the emotional aspect, too. I was only diagnosed a few weeks ago after fighting for 12 years to understand what was going on. I was grateful at first, just to have some answers. But the reality that this is a long term, all encompassing condition with no 'cure' or set treatment has been hard to accept without resentment. I just keep reminding myself that I at least know what it is now. It helps so much just knowing I'm not crazy. 

[Bluebonnet08]

Thanks Pistol... glad I could help a little.  I understand exactely how you feel though and definitely have my days of discouragement as well.  However, my HOPE is that research will improve our situation.  

Lainy - The supplement is actually called "Deep Sleep".  I found it at a Health Food store.  Nothing has ever helped my sleep and I am super sensitive, but this did!  I can't take it while I'm pregnant and I can't wait to deliver this baby to take it again and get some restful sleep!  haha  I am not sure if I can post a link to a product on here, but it's on amazon.

https://www.amazon.com/Deep-Sleep-Supplement-California-Passionflower/dp/B001ECXEKG/ref=pd_sim_121_2?_encoding=UTF8&pd_rd_i=B001ECXEKG&pd_rd_r=JV541A4FKZ6SYGVY587M&pd_rd_w=GHEe3&pd_rd_wg=nV4ya&psc=1&refRID=JV541A4FKZ6SYGVY587M

[statesof]

Hey @Pistol just wanted to add to what has already been said. Because I can find my life so limiting compared to what I was capable of doing before (and I completely relate to the feeling 'cheated' out of something) I have to ask myself what is it that I am wanting to do or wanting to accomplish?

Because there are thing I want to do (work out and go on long runs everyday) that I, unless theres some medical miracle, will never be able to do. There are however other things I'm wanting to do like taking my dog for walks or going to the art museum that I can look at and say how can I accomplish this? It may mean planning, taking additional meds, using a powered wheelchair, or having help from friends or family.

Its really easy for me to look at the sea of things I can no longer do and I can be completely frustrated by it, but instead if I look at the few activities that I really want to do, the list is usually much smaller. I can then approach those activities and try and figure out a way that I can do them.