Having A Really Hard Time....

[shathaway0811]

I don't normally like to complain or voice how frustrating all of this is, but I felt this is the most appropriate place of any since I don't want to put it on my bf and family anymore.

I'm just having a very difficult time lately with all of the symptoms and fatigue that I'm experiencing, and the strain it's putting on the people I care about. I generally have a very high tolerance for pain and physical discomfort, but when it's like a million mosquitos biting you all the time verses one occasionally, it gets the point where you just start to go a little crazy. Individually and sporadically, the symptoms are tolerable, but together and constant, they start to get really frustrating.

I think it's especially frustrating because my parents are physicians, and they don't know what to say, and it's not fair for me to expect an answer for them. They have to be my parents, and not physicians, and it makes them feel helpless when they don't know what to tell me. So I end up feeling like I shouldn't talk to people about it and I feel a tremendous amount of guilt when I do need to get it out because other people can only take so much. The worst thing about all of this is that I don't "look" sick, so it's (understandably) difficult for people to get just HOW crappy I feel and how FREQUENTLY, and therefore I don't fault them at all for being tired.

Yesterday, I was light-headed and short of breath just sitting at my desk at work all day long. It felt like I was fighting to stay conscious. And the strangest thing was that my heart rate was unusually slow for me (60-65 bpm) and then overnight became very high (woke up with 110 bpm). Everything is just so all over the place and I'm really scared of it getting worse. I can't eat anything without feeling sick, and I'm exhausted all the time. My boyfriend jokes around with me about how much I sleep (all in good fun, of course) but what I thought before was me just needing more sleep than most people to function is actually my response to feeling like crap all the time.

Basically I just feel like I have no concrete answers and that everything is just getting progressively worse, and all I want is someone to tell me they know what's going on and to fix it. I have a GI appointment on Thurs. and I'm hoping to gosh he knows about dysautonomia.

I HATE THIS STUPID ILLNESS!!!

[jknh9]

*hugs* You and me both. I wish I could tell you it gets better, and it might, but the fact is that it. just. *****. I hope your doctor is versed about dysautonomia, but try not to be too frustrated if he hasn't--it is still a "rare" illness, after all.

I hate complaining about it, too, but lately it's hard on me as well. I'm right there with you! I want SOMETHING concrete and stable in my life! I know we need to "play the heck out of the hand we're dealt" but it's SO HARD some days! I'm comforting myself with the thought that spring will come soon. Sounds like you could use some sunshine as well. Hang in there. We are right here with you and rooting for you!

[shathaway0811]

jknh9,

Thank you so much!! This is such a great community with such great individuals. I'm sorry you're struggling as well, and I appreciate your kind words more than you know! Definitely excited for spring and warm weather, I could use some time by the pool! Haha.

[JustaSpark]

It's such a struggle having this illness that is so uncertain and nebulous, not to mention debilitating, and on top of it also feeling guilty about the strain that being ill and needing to vent puts on the people we love. It's a weird thing and I've been thinking about it lately, so I can really relate to your post.

I was in the hospital recently related to POTS and I know how stressful it is on my family, and that makes me feel guilty because I know they are at their limits right now for hearing me vent. And the not looking sick has been a blessing and a curse. I guess it's nice we don't look sick, but when we feel so awful and others can't see it, it can be hard. So I've been trying to be extra kind to myself lately, and remember that I'm not alone in this illness. And venting is important too! haha

I hope you're feeling a bit better today, and that your upcoming GI appointment goes well.

[Katybug]

While I was not well, I was stable and functional at a non-working but basic needs level for about 2 years. I have been in a steady backside since early in 2015. The last 3 weeks, I feel like I'm holding on by a shoestring....like my body is making that noise that machines do when they are coming to a slow, grinding halt (that's happening in my head.. not any real noises coming from my body! Lol!)

And, I know I felt like this before, scared...unsure...out of control....frustrated. That's why I know to just keep putting one foot in front of the other. I do the best I can each day and I have learned to shed the guilt and not beat myself up for "not doing more." Those weren't easy things to learn but that's because I gave everything to the world around me for my whole life and had never given proper thought to giving all the same things to myself...love, kindness, acceptance. I gave that to everyone else. In some ways it is a gift to be forced to bestow some of that on yourself. I know many people who are in the latter years of their life who have never had the chance to learn this. So, anyway, after a few minutes of wallowing, I just choose happiness each day and find satisfaction in little things.

[SarahA33]

Hi Sarah,

Sorry that you are going through a rough patch right now. Try to remember that this too shall pass. I'm sure it's hard for your parents, and I know in my case, I don't find my support from my parents. (for different reasons though). It's probably a lot for them to see you feeling poorly and maybe they aren't exactly sure what you best need in terms of support. Seeking and Receiving support with a chronic (and invisible) illness can be a struggle at best, especially in the beginning.

I'm sure your boyfriend and parents have the best of intentions. They love you, want to help you and ease as much pain as possible for you. I know in my situation, early in the diagnosis, often those with the best of intentions often ended up getting misconstrued and hurting the most sometimes. Things that were said as compliments would somehow leaving me feeling invalidated and crushed. I'd end up asking myself, "how did we get here again?" I've learned to now cut some slack to those that I love who I know mean well, because it's hard for everybody. It's a real learning curve, and everyone learns quickly without a handbook. My best support comes from my closest friends, my fiancé, and my NP who actually plays the role of a amateur therapist. I don't doubt that you'll find what works for you in terms of support. In the meantime, we're all here for you!

Since the forum is public, sharing location is optional for you, but I wasn't sure if you were close to any of these support groups listed here, just a suggestion! http://www.dinet.org/index.php/information-resources/support-groups

[Sylvie33]

Beautifully put Katie....real words of wisdom about finding empathy and compassion for oneself....I struggle with this.

And Sarah, your words stressing a benign "letting go" of the judgments of others are also so helpful.

This thread is relevatory in understanding how illness may harshly be viewed as "failure," by ourselves and others....yet it's just the way things are for many of us now....we must find understanding and kindness where we can, and especially within ourselves, as hard as this may be.

[shathaway0811]

I can't emphasize enough how meaningful all of your words are. Thank you so much for your insight!

[Kris4444]

I struggle with this every day too. I've lost most of my "friends" over the years because they really just don't understand what I'm going through and as you said, we "look" normal. Then there are the times when I don't look normal because I've ridden my horse and I'm lobster red and shaking and sweating and that turns people off too, it makes them uncomfortable to be around me. Sometimes it feels like you just can't win.

I've noticed that my husband and my Mom tune me out when I talk about doctors visits or start complaining about how I'm feeling. Sometimes I'll just stop talking in mid sentence to see if they are listening and they don't even seem to notice. When I start to turn inward I come here. There is ALWAYS support here. I don't know what I'd do without these forums and the people here who really do understand and get what we are going through because they are going through it too.

Today I had a lady from another forum send me a private message thanking me for taking her under my wing. It made my day that I could help someone, make them feel better, rest easier. That's what it's about. I realized that when I've been feeling better I tend to stay away from the forums and that is quite selfish really because there could be someone reaching out that I might be able to encourage as I have been encouraged when I was down.

Keep your chin up and know that you have a caring community behind you!

[Divinelixir]

I feel you kiddo more than you know as I sit here ready to burst into tears with anger. I got a diagnoses and let people know so they would stop thinking I was full of it or a hypochondriac. I received no sympathy or understanding from anyone at work or in my home life when I told them the news (I actually got no response at all). I think everyone still thinks I am a hypochondriac because I look fine. Its just really hard to see people around you getting insane amounts of sympathy when they have a cold or the flu, but you don't get an ounce of compassion for an incurable disorder that we have to live with (and try to manage) for the rest of our lives. I find my issues make me highly irritable which in turn makes me a *****. Maybe that's why people could care less about my struggle or maybe I am a ***** because I resent that they don't care. I've just become a very bitter person and I hate that. I guess its because I feel utterly alone. No one in my personal life struggles with this disorder so I have no one to relate to, and healthy people sure can't relate to me. Its highly frustrating. I hope your gi appointment goes well. I saw mine yesterday and we have a colonoscopy and endoscopy set for next Wednesday. I have lost count of how many times I have had this procedure done. Hang in there and know we are all here for you. Please keep us updated on your progress

[dancer65]

Hi I am really sorry you are having such a hard time , I can like everyone here relate to your post. I agree with what has been posted in the replies.

18 months ago I thought I would never come to understand or deal with the symptons that change every hour every day, I have read and re read (brain fog ! ) so much info here which helped me realize it wasn't in my head and I wasn't a hypochrrondiac after all

I just wanted to say I am finally getting to grips of the unpredictality of each day and learning to understand my body more, I do still get it wrong though! Without this site I am sure I would still be confused frustrated and angry, the encouragement kind words and the wealth of knowledge here I has helped me to be more accepting of this situation.

Hugs and best wishes

[abizzle229]

I think just having a place to vent our frustrations, to people who are going through the same thing helps. I break down crying to my mom all the time, which ends up making us both sit there crying. But nobody really knows what we are going through unless they actually have this. Hang in there. Venting helps get it off your chest and hopefully feel a little bit better that you aren't alone!

[Rose11]

Sorry you are having so many problems right now. Never feel guilty when needing extra rest, just do it. That will give you the energy to do other things you enjoy. I'm sure your parents are frustrated, since they probably did not get training on Dysautonomia when they were in medical school. Perhaps they would be willing to take a little time to find research on the subject through medical journals. Many parents who are not physicians do research to better understand what their children are going through. They don't need to have all the answers. Maybe they can help you come up with questions for your upcoming doctor appointments. Good Luck and keep sharing on here. Hope you have a wonderful weekend!

[joshrandall]

I don't normally like to complain or voice how frustrating all of this is, but I felt this is the most appropriate place of any since I don't want to put it on my bf and family anymore.

I'm just having a very difficult time lately with all of the symptoms and fatigue that I'm experiencing, and the strain it's putting on the people I care about. I generally have a very high tolerance for pain and physical discomfort, but when it's like a million mosquitos biting you all the time verses one occasionally, it gets the point where you just start to go a little crazy. Individually and sporadically, the symptoms are tolerable, but together and constant, they start to get really frustrating.

I think it's especially frustrating because my parents are physicians, and they don't know what to say, and it's not fair for me to expect an answer for them. They have to be my parents, and not physicians, and it makes them feel helpless when they don't know what to tell me. So I end up feeling like I shouldn't talk to people about it and I feel a tremendous amount of guilt when I do need to get it out because other people can only take so much. The worst thing about all of this is that I don't "look" sick, so it's (understandably) difficult for people to get just HOW crappy I feel and how FREQUENTLY, and therefore I don't fault them at all for being tired.

Yesterday, I was light-headed and short of breath just sitting at my desk at work all day long. It felt like I was fighting to stay conscious. And the strangest thing was that my heart rate was unusually slow for me (60-65 bpm) and then overnight became very high (woke up with 110 bpm). Everything is just so all over the place and I'm really scared of it getting worse. I can't eat anything without feeling sick, and I'm exhausted all the time. My boyfriend jokes around with me about how much I sleep (all in good fun, of course) but what I thought before was me just needing more sleep than most people to function is actually my response to feeling like crap all the time.

Basically I just feel like I have no concrete answers and that everything is just getting progressively worse, and all I want is someone to tell me they know what's going on and to fix it. I have a GI appointment on Thurs. and I'm hoping to gosh he knows about dysautonomia.

I HATE THIS STUPID ILLNESS!!!

It's a horrible illness, Im sorry you are having these issue's. I guess I just try and think it could always be worse, that is hard when Im reminded of what other people have that I dont I guess thats where strengthening our mental resolve comes in.

[Amalia01]

Shathaway,

I thought about this post again today because my father, retired MD, just really upset me.  I have been having problems with migraines, cluster headaches, and tension headaches a lot lately. My doctor prescribed Amitriptyline for migraine prophylaxis and I have been more tired, spacey, lightheaded, a few more irregular beats and my bp has been dropping upon standing.  I had to decrease from 50mg to 25mg.  My father ( I am not taking his advice) is telling me to increase it again despite what neuro is saying.  He told me that amitriptyline will "take away all my problems" and that I should request Cymbalta as well as it will fix everything.  I reminded him that this was a very real condition and what I am experiencing is not psychosomatic.   Oh, and my father has not bothered to research/understand my condition at all.   

[Katybug]

I'm sorry about your Dad, Amalia. If it's any consolation or back up, I was on a rather high dose of amitryptiline for migraine prophylaxis. It did not fix all my problems and specifically it did not alter my mood or Outlook on life in any way (because that's not what my problem is.) Keep your chin up. 

[shathaway0811]

Amalia, 

I am sorry. I know it's tough. I'm lucky in that my dad is aware of dysautonomia and actually was the one to suggest POTS/autonomic dysfunction as part of what was going on with me; however, where my parents tend to drop the ball is in understanding how debilitating and actually uncomfortable it can be. Their justification is it's not "serious" because it's not "life-threatening".... I'm like yeah I know it's not gonna kill me, but it makes it extremely hard to function and it's hard to be in some kind of discomfort or pain 24/7. They also think that because I don't show how I'm feeling, that it's not as bad... it's just I've been dealing with these symptoms for so long that until they get to the point of being unbearable, I suck it up and go along with my day. My frustration tends to come out in emotion which also contributes to them thinking things are psychosomatic, as you said. I love my parents and I know they want the best for me and that it's difficult for them to not be able to fix things, but I just wish things weren't minimized, even unintentionally. I don't want anyone to feel sorry for me, I just want to be validated and acknowledged. 

[Amalia01]

Thanks for the replies. I normally do not like to complain but had to vent.

Katybug,

Did you have to increase the amitriptyline slowly?

[navyblue]

Weird, I was just thinking about posting a similar post.

I'm also struggling with a setback and with what seems to me a lack of understanding on the part of those close to me.

I did it. I finished my college classes and I have my degree in Biology. I even got all A's last quarter. And yet, I feel so mixed up because it's time to get that first job and it's just a lot to deal with, because I feel that no one understands the extent of how awful and dysfunctional I feel. No one understands how I feel like the lightheadedness, head pressure, and fogginess seem to increasing with no signs of leaving...I mentioned to my friend today about how my heart rate was around 130 just hanging around the house and she goes "from generalized anxiety?" I about slapped her (obviously I didn't haha but mentally). She knows about POTS, I've explained it to her in the past. I don't understand why people jump to these explanations..I heard her asking her boyfriend recently "Tourette's is from anxiety though, right?" because he was talking about tics. 

My boyfriend too recently revealed he STILL  thinks my problem is mainly psychosomatic from "researching too much on the internet" even though I've shown him with my pulse reader what my heartrate does. That really hurts. When he had the flu I took such good care of him (even though I had it too, I'm just used to powering through feeling bad), but I just don't feel cared for or supported in this. My mom and dad also use language like "why are you doing this again" when things get worse.

And I also don't think people realize my complaining and venting happen when I'm really at my breaking point with this stuff. I don't think they realize that I'm dealing with these feelings 24/7 and usually do a decent job acting normal. They think because I'm smiling in some pictures from a vacation that it means I felt good on that trip - when it fact, grateful as I am for still being able to take trips, I felt pretty awful through most of it. They think because I aced a final exam (again, very grateful) that I wasn't feeling like my head was floating in the clouds and like I was on a boat the whole time. I guess I just want some sort of acknowledgement of the fact that I overcome these feelings every single day because the first thing someone seems to say to me if I vent about feeling bad is that I need to do a better job ignoring things and controlling my reaction to symptoms.

 

But then, I have to remind myself, nobody's out to get me. Nobody is intending to make me feel miserable or misunderstood. People normally want to "fix" things and when they can't, they seem to resort to telling you that it isn't that bad or something like that. It's only natural. I guess I don't have much else to say except that I really get it. 

 

 

[stellaluna]

I was also on amitriptyline --that's elavil right?, as a migraine preventative attempt for a stretch of time more than 10 years ago.  I can't remember the dosage but I do remember that it made me very tired and it really didn't do a great deal for the headaches.  (this was before huge POTS jump in symptoms and well before diagnosis)

I have tried many medications for migraines both preventative and rescues over the years ( imitrex made me nauseous worse than the migraines!)  Of course every person/body is different, but for me, the most life-changing migraine-wise has been topomax.   I have been on it for many years and wish I would have tried it sooner.  Though there are some side effects to get through in the first weeks-- 

[yogini]

It is awful.  No one else can understand what it feels like unless they have a debilitating, chronic illness.  Everyone think's we're healthy because we look healthy.  Healthy people don't like to think or talk about illness.   This forum is really special place where we understand each other and freely share our experiences about being ill.

I hate to say it, but I think many of us feel crappy and just suck it up and keep moving forward.  The scariness and the ups and downs you get used to over time.

If your parents are doctors, could they help you come up with a treatment plain tailored to you?  That's really how you get better - figuring out which meds work for you and which exercise you can handle.  It takes time and patience, but when you find the right treatment, you can exercise more and be more active and you will gradually get better.

[Katybug]

Amalia, I don't know if you have to increase it slowly but my neuro had me do it slowly. I did an increase every 2 weeks as long as I didn't experience any side effects, which I didn't. 

[Katybug]

Navyblue, Congratulations on getting your degree!

I was just saying to my mom today (who is actually completely supportive) that I don't think anyone understands what goes into getting to a doctor's appt or going to the grocery store. The planning, the prep, the backup plan, everything you don't do to make sure you can do the thing you HAVE to do, the fluid loading, the compression gear, the layering of the outfit to adjust for the chills and the hot flashes, do you need to eat and when and what. It's really mind boggling.

[dancer65]

Well done navy blue what an achievement! 

I think those with chronic illness are some of the mentally strongest people I know . Katy I hear you life seems to demand more organising than ever before a skill thats even more difficult with brain fog ! 

[Amalia01]

Navyblue, first let me add my congrats on your degree especially while dealing with your chronic condition. I could not have put it any better myself as I, like a lot of other people here on this forum, am also doing my best to put on the "happy face" on the surface despite what is really going on inside. I can really empathize with the part you mention where every so often as a human being you need to vent about how you actually feel and when you do, people treat you like you are simply feeling anxious or focusing too much on what appears to them to be not much of anything because they cannot "see" what you feel. Trust me, I have heard too many times that I "Spend too much time on the internet". Never does the thought occur that perhaps I am trying to learn more on my own so I can do what I can to get better.

On the Family support issue,  2 of my siblings are at least trying to understand, but, my parents simply either don't get it, or, don't want to hear anymore about it. It seems to be a generational thing where like Shatahway mentioned if you're not dying, it can't be that bad mentality.

Katybug, boy is that spot on about all of the planning involved for us that others never have to consider , or, worry about. Most folks never have to deal with these what are normally insignificant things in everyday life.

Stellaluna, amitriptyline (Elavil) is the first preventative medication that I have been prescribed. I may have to try a different preventative medication.

Yogini, it sure does feel awful at times, but, it certainly is nice to have this site where you can talk to others who don't need any kind of "roadmap" to understand what we are dealing with.

Like Dancer mentions, you do have to be a strong bunch to function on any level while dealing with all that is happening beneath the surface. Not trying to toot our horns, but, everyone here knows the reality of what we deal with and a pat on the back now and then from our peers is not a terrible thing!