Reaching Out To Others. Hard Time Coping.

[Faintinggoat]

Hello everyone. I've been here a while, but I've been more of a forum lurker than a poster. That being said, I am feeling the need to reach out to some fellow Spoonies. I don't know if this is the pattern that other, but I will try to describe my experience.

When I first got sick, I never really experienced any mourning or grief from being sick because so much of my life was about finding out what was wrong with me. I think part of me wanted to hold on to the hope that once they figured out what was wrong with me that I would be okay and that they'd be able to stop it completely.

When I was finally diagnosed there were two experiences for me. First the excitement that I finally knew what was wrong with me, and then that was followed by finding a doctor who knew how to treated, and despite understanding the actual reality of living with POTS, I still held onto hope that someone would come along that would fix me completely and I'd be fine.

Now, I am being realistic about my diagnosis and it really stinks. I am on several medications that by all means have helped an amazing amount. Specifically I was fainting every single day sometimes multiple times a day, and now I am fainting about once a week or 10 days/ I know that I should be happy about that but I'm not. I hate that I'm still fainting, and even though I hate fainting with an undying passion, the fainting everyday really helped with the other symptoms because it would kinda reset my system. Now that I am fainting less, I have more symptoms (e.g., sleepiness, dizziness, etc.) I am also starting to struggle with coming to terms with having a chronic illness, and facing the prospect that this could be the rest of my life. I am really struggling with this last part. I have a therapist, but I started seeing her for other issues, mainly PTSD and OCD. But now the biggest issues for me are the POTS and Chronic illness, but she isn't really a health psychologist so she hasn't been helping with any of this, sadly. I know that and have read of others having the same experience or feelings so thought that I would just reach out to others for help.

Thanks everyone,

Goat

[corina]

Hi goat! I'm sorry you are struggling. It is tough to handle all this and grieving and mourning are part of dealing with the loss you are experiencing. I'm sorry your therapist doesn't seem helpful re this. Coming here might help you, we all know what you're talking about being in the same boat. We know how hard it can be to have let go the things we loved like school, working, friendships, even relationships. It's not that we can actually help you, but maybe knowing that I think of you, know what you are going through and feel for you might comfort you. Sending warm thoughts.

[Chaos]

Sorry you're having a tough time right now. I think we all go thru periods like this, especially when symptoms flare and the reality of our current lives hits us square in the face. I also think, for me personally, that any depression I get tends to occur more readily when I'm in a physical flare. It makes sense given that the same neurotransmitters that are involved in POTS (norepi, epi, dopamine etc) are also the ones involved with moods. So if they are "off" it will affect not only my physical symptoms but also emotional ones.

The only way that I've found to get thru this is to do anything I can to keep hope alive. If I'm having a bad day one day, I tell myself that the sun will come up tomorrow regardless and maybe THAT day will be better. I try to remind myself that I've been living with this for 7 years and I've had good times and bad times so when the bad times hit, I try to focus on the fact that eventually a good time will come around again. My last bad episode lasted over a year so it was hard keeping up a good mental perspective for sure. But now I've had some better months, even though I still have some pretty bad days. At least having some good days intermixed makes things easier to bear.

The other thing I do to keep hope alive is to keep researching as much as possible to explore every avenue I can to see what might be new that I could try to help my situation. This led me to see an ME/CFS specialist who is treating me with antivirals and anti-inflammatory drugs. This has been helpful. It also led me to look into 23 and Me (genetic testing) which showed that I have significant MTHFR mutations and led me down the path of trying various supplements which have also been helpful. It also made me search out an acupuncture doc who specializes in Neuro problems. She has been helpful as has a chiropractor who also has a lot of experience in "functional neurology". He doesn't do adjustments on me but has given me many helpful ideas and suggestions. As long as I keep finding new things to try it feels like I still have hope. I also find reading the current research to be hopeful as it reminds me there are people out there studying this stuff and trying to find answers for us. As long as they're trying to help, I can't give up hope.

Hang in there! Sending you lots of hugs and warm regards.

[Nymph]

Dear Goat,

I understand. When you feel bad for years but think, someday a doctor will listen to me, figure out what's wrong and cure me, it is easy to plan for the future, to assume that you'll feel well then. When you know you have a chronic illness and that, even when you are doing much better, it still ***** much of the good stuff out of your life, it is much harder to look at the future with hope. It feels like things will never get better and you quality of life and ability to do stuff will remain in the toilet, or at least in the bathroom to stay near to the toilet!

I understand. I am in the process of adjusting my career plans to my illness again, trying to find something I can do that I will at least somewhat enjoy that will not make me sicker and put me on disability way too soon. I just never really thought it would come to this, even though I've been changing my life for my illness for years now. It was always temporary. I never changed my future plans. Now I realize that is not realistic.

Yes, it stinks. For me it has deepened my belief that I am really not the one in control of my life but God is. That is a good thing but the process stinks. I wish there were an easier way for me to learn such lessons!

I am glad that you have a therapist. If you don't feel like she understands this stuff maybe you should look for someone who does. Personally I haven't found anyone without a chronic illness themselves who really get it, although perhaps there are a few people. Do you have friends who try to understand?

[Bigskyfam]

Understand. I'll post more when I'm less foggy

Rough week after a better summer. My hubby's friends brought their kids over last night... Ages 2/4. My hubby was keeping them occupied. My youngest is 7. I've been diagnosed for a year. Was hard keeping up with them even though I was sitting most if the time

I had a thought and shared it with my hubby

What am I going to do if I'm ever a grandparent?

I don't see it happening soon but we have 5 kids

This made me sad

Emotional component is so very tough and touchy

I'm glad I've got support with you all

Even though I may not reply or post often

I always read

[jackiemxoxo]

Hello, I can so relate to your post. I feel like every time I think I am getting better, bam, I am hit with something that pushes me back. I feel with chronic illness that it is a lot easier to focus on the negatives than the positives. I have to force myself to appreciate the little things in life right now because I know it is better for my mind and body. This is a lot easier said than done though.

I agree with Chaos that researching more about the illness can help. Alternative medicines and therapies may be useful. I am in the counseling field (had to take time off due to sickness) and I have heard positive stories about biofeedback as well as other alternative therapies. I hope to eventually go this route when I am not feeling so sick. Also, tell your therapist what is bothering you most because that is what you need to talk about.

Honestly, I think the most important thing is to not lose hope. I have to believe that things will get better and not always be this way. Even if they don't, I still have to believe it because that is the only thing this illness can't take away from me. I also have to hope that more research will be done and new treatments will be discovered. Vent as much as you need to because I think this forum is full of people who truly understand what you're going through when other people do not.

[imapumpkin]

Sorry you are having a rough time. I would defnitely recommend looking for a therapist who specializes in Adjustment Disorder, since having chronic illness is a huge adjustment and comes with it's own myriad of depression, anxiety, frustration, etc. I don't know how your insurance works, but maybe if you like your current therapist you can find another in addition to help with your POTS stuff? When my POTS first flared I was seeing a therapist for anxiety, but she really didn't have any tools to help me cope with a chronic illness, and frankly, didn't really have much compassion or understanding about days I needed to miss sessions because I wasn't well enough to get thereor had a doctor's appointment. I switched therapists and I am much happier with my current counselor. A lot of what she helps me deal with is the frustration and depression and sadness that comes with dealing with the loss of my "normal" life before POTS.

You're not alone. I have good days and bad days, and some days I just feel sad and awful all day about all the things I can't do, things I'm missing out on, things I used to do but can't anymore...and days that I'm so tired that I cry for hours because I so desperately want relief from being sick and fatigued. I acknowledge that I might have to deal with this for the rest of my life, but what gets me through the day is the belief that maybe I won't. Maybe tomorrow will be the day my body starts to right itself. Maybe next week my doctor will suggest something that helps me feel better. I know it's really REALLY hard to be positive but the possibility alone of one day getting better is something to work towards and strive for.

[lynnie22]

Hi Goat,

Sorry you're going through a tough time right now. I know. I understand. A lot of us do, so you are not alone in that. Some days, the bad days, I feel so overwhelmed I hate to face the day, and hope seems to be in short supply. But as many have said, Jackie and Chaos, among them, hope is really important to keep alive, because, as you know, things do change-- from fainting everyday to fainting once a week -- no small feat, even if new symptoms come to be tackled with. Finally there is more and more research being done on this and I believe that new discoveries will be made. In the meantime, the fact that alternative therapies have helped so many is positive, and something I should be doing more of, for sure.

Not to say it's exactly a celebration to have this illness, it's a drag, it's frustrating, but it's important to focus on what gets better, the days that feel good, the fact that many people have really been helped.

As far as therapy, I know it well, and you have to feel the therapist gets you, connects to you. I don't think the therapist has to be ill herself, but she or he has to understand in her heart what it feels like for you, what your life is like for you, and help you find the hope that seems so elusive at times. Certainly a therapist with an understanding of chronic illness is a plus, as long as she is also compassionate and gets you as a person. My sentiment on good therapy, Tell her how you feel about what's going on there, see if it helps. If not, then maybe move on.

Anyway, I'll be thinking about you, Goat, and hoping that you begin to feel better. Glad you're writing.

[Faintinggoat]

Thank you all for your responses. Though I am only now writing back, I have been reading each of your comments as they have come in. I know that pretty much everyone on this forum is here because they understand that feeling, and those bad days. I really appreciate everyone of you and each person on this forum. I know that there are still a lot of options for me and that research changes every day, but its like everyone here has said, we all have our good and bad days. I have my therapy today, so I will try to talk to her about how I feel about dealing with this condition, and how I don't feel like we've been addressing it adequately. Thank you all again,

Goat

[jknh9]

Hi Faintinggoat (I love your name ),

I went through a really rough period over the summer and was incredibly depressed because of it. Many of us are type-A overachievers, and that might make it harder for us to deal with a long-term diagnosis. For me, it meant a career path change, which was devastating and continues to be so when I hear about the work my former colleagues are doing and how their careers are taking off. Maybe it sounds silly, but I think to myself "It could be worse." I focus on the fact that I am a lot stronger and more functional now than I was 3 years ago. For instance, now I work 20 hours a week at an office. I would never have been able to do that 3-4 years ago. It's a long, slow road, of course, but it truly helps to focus on the positives. I fortunately found a friend recently who has a different chronic illness, and we've built a support system for each other. It's been great to make that connection.

When you can, try to get outside. I take walks and hike as often as I can, both for the exercise and to lift my mood. You might also look into trying light therapy, especially if you're in the northern hemisphere and going into winter now. That's something I recently started. I've also been tweaking my diet and following about a 70% Paleo diet. It's tough, but honestly it's been fun to discover new recipes and learn about the nutrients of each ingredient in my food and how they might help my particular symptoms.

I also want to say that the community here helped me through a really difficult time over the summer It's a great place for support and encouragement.

[Raisin]

I am grateful that you wrote about this. I didn't realize that I was doing the same thing re finding the cause. I am a "why" person. I, like you, was so involved in trying to "figure it out" and then that became overwhelming for me though I also felt that if the cause was found, I would experience a great sense of relief as well as a possible cure. Now, I have been told that I am part of the 30% of folks that the cause remains elusive. While I like to feel " special" in any way I can usually, this is not the "special " that I ordered. Lol. I still remain hopeful, however, as a have a good team of docs now so I feel like they are on top of the Dysautonomia and now I feel my only responsibility with them is to keep them apprised of any new symptoms, experiences, etc. just in case that will give them any further clues. I also see a Psychologist now that I think "gets me" and I can't tell you how invaluable that feels. I see my vascular Pots guy tomorrow and I think I will ask him to not give up on me and to keep me in mind when he hears of new treatments, possibilities, etc. this place has been so helpful (the forum) for me also. To sum up the confusing post I am trying to write here...I hear ya and I am right with ya! Sending warm wishes and soft blankees....

[kaevne]

When I was finally diagnosed there were two experiences for me. First the excitement that I finally knew what was wrong with me, and then that was followed by finding a doctor who knew how to treated, and despite understanding the actual reality of living with POTS, I still held onto hope that someone would come along that would fix me completely and I'd be fine.

Now, I am being realistic about my diagnosis and it really stinks. I am on several medications that by all means have helped an amazing amount.

I can completely relate to this. I was initially ecstatic that I finally have a diagnosis and an explanation for what was going on, but slowly depressed by the realization that there's not that much you can do. Midodrine helps but not much. I don't have the fainting issues but the dizziness + headaches are a constant reminder of illness. I am struggling as you are, and all I can contribute is that I try to take one day at a time. My goal when I wake up is to make it to the end of the day. It's hard but other than getting an MD PhD myself and researching POTS I don't see what else I can do.

[dizzyallie]

I hear you Goat and feel the same way. I too am under a thereapist, there is a lot of loss that goes with chronic illness. I have been dizzy now 4 and a half years constant, with all other dysautonomic symptoms - its the pits, really is. But I have learnt that it is NORMAL to feel such sadness and grief for where we are at. Still, makes it very hard, and unfortunately depressing. I do hope your therapist is helping you. I find they are beneficial in getting you to open yourself up to let yourself grieve. Hugs to you x