Has anyone else has had any difficulties with family due to the stresses of coping with the dizziness? My mom and I have been having some big troubles recently about this...basically, she is tired of hearing about my problems, which seem to be multiplying due to the illness. (It's been hard on my husband--we have young children to care for, and now my job is tired of me telecommuting--they want me to take a leave, which means no pay and then probably losing my job unless I can get better asap.)
My mom thinks I'm over-obsessing about the illness and somehow hurting my family by focusing on it too much. She told me she can't talk to me about it anymore. I think she's frustrated that I'm not better and that I'm still questioning my diagnosis. I do wonder about that--but I just want to make sure I'm treating the right thing. No one could be more sick of the situation than me, but it seems that not focusing at least somewhat on the dizziness and determining its cause & treatment is like not focusing on a knife in your foot.
Anyway, I feel very sad about this because I guess I rely on talking with her about all the most difficult parts of the illness that I don't feel I can share as much with friends.
Thank you for letting me vent! I guess I've gotten somewhat isolated b/c of not working or going out as much, and it's hard to lose a close family member in the midst of this...
I'm sorry to hear things have become difficult on this level too.
My dad is my main supporter right now and my ear for this stuff. He's carted me around to my appointments, walked my dog, gone to the grocery when I couldn't function. And now when I should be getting better and I'm not after 7 months, it's a never-ending story of being distraught and questioning "what the issue is", "why isn't treatment working", "what's the next step,and who do I go see this time." It's exhausting, and much so for my dad as well, so I know a little what you're going through.
You need someone who can understand and support you, but it's hard because they have no answers for you, no suggestions and feel upset that they can't help. When that happens, they start to give up a bit.
Suffering in silence is not the answer though, it won't serve you or help the situation overall.
You do need someone to talk to, although it might be good to pull back a bit with your mom and family in discussing it as much with them. When you get to the point of not progressing, scared and frusterated, it can become difficult for them as well out of simply not knowing what to do or how to help. It's hard to shut yourself off though, because you need to feel that you're not in this alone, that there's someone there who will ride this out with you and see you through it.
The doctors aren't unfortunately, so you need someone to be there for you.
You shouldn't give up looking into what's causing your symptoms. Sometimes time heals this stuff, but it also masks the symptoms because you think you're getting better, but then it comes back too. Writing out your "game plan" can be helpful, jotting down what you feel like each week, what's changed, what's worsened, what brings on symptoms, etc. and sometimes going back to the source of the original issue and starting over again can shine light on the real cause.
I've thought about my options with this too:
1. I can go see a therapist, someone who handles illness and can be my support, so I don't feel alone in this
2. I can write it out, make a plan of what I haven't tried or who I haven't seen and how to go about doing it, do I need to go back to the same doctors or get another opinion
3. I need to tell my dad (your mom) that I count on them for support and to bounce some of this off of, but I'll try not to overload them with all the details and expect that they will know what to do or be able to help me with my symptoms. I might get upset, I might cry, but can they just listen and be supportive? That's all I can ask, that's all they can do.
That's me, now you....you have kids and a husband. That's even more difficult because you have responsibility and a life to share with someone.
I haven't worked the entire time I've had this. I was unemployed before that and was looking for work, now I can't work. It's crisis mode! You're in crisis mode too. Your family needs to realize this and understand your limits. If you get overloaded, it effects your recovery. You can only do what you're physically able to do.
And working while having this is just torture. I don't know how you've lasted this long. I guess I was lucky in that all I've done for work is a little consulting (I'm going in the hole with credit debt and selling things on Ebay for food ;-), I can't imagine having to do my old job while suffering this.
I was so nauseus the other day I had to do lamaze type breathing to keep from tossing my lunch in the car.
Can you do any work from home or maybe take the leave and ask if you could consult part time for them? Would they go for that? If you loose your job because of it, check into disability coverage and the term.
Work is most likely the bigger stessor than your family. You might be able to deal with this better, without having work as part of the equation if you can swing it somehow. It can be too much sometimes.
What a mess this can turn into. I feel for you Violet. Sorry for all my babble. Hang in there and just know your family are feeling a little dent from this, but they'll spring back. They just don't know what to do. Think about what you need from them in support (giving you answers on what to do, for instance) and determine whether they are able to play that part or not. If not, then figure where else you can turn to or what they can do for you instead.
Sometimes it's more frusterating dealing with the response of them throwing their hands up and retreating and better to just receive what support they know they can absolutely give you. They'll feel like they're helping and ultimately will be more a part of it while you're going through it.
By the way, how have the meds been working for you and the sinus infection?
Violet...snh really said it all. I have to vent about this illness. I vent to my partner because he really understands what is going on. I don't discuss this with one of my sisters because she has told me it "stresses her out"...she has bvvp and it only makes her upset about her condition. I have also lost a few friends who really didn't want to hear about it at all.
I have always been more of a giving person....so this was actually the first time I was asking for time for myself. It has been a very good lesson. If I did not have my husband to listen, I would have to go to a therapist. Keeping it inside would not have worked for me.
I am sorry your mother has taken this stance. As a mother myself, I would be more concerned about my child then wanting her to "stop talking about it". Sounds a bit selfish to me. You are sick. If she believes you are sick, then she just doesn't care to listen anymore. If she doesn't believe you are sick, I would:
1. print off material that shows the diagnosis
2. Request that she comes to your next doc's appt and ask the doctor what he has seen in his patients for life impact.
I would never tell my daughter I was sick of her..if she was needing a shoulder to lean on when sick.
Thank you so much, Snh & Charlotte! It helps so much to have your support through this. You are s!
Charlotte, I also have a daughter and it does make me question my mom even more. She does have a history of being less than supportive, but it always surprises and hurts me. I often think about how I would act if my child were feeling the way I am, and that keeps me searching for answers for myself, if that makes any sense. I've also been very surprised by how many friends have pretty much stayed away. It is very weird to see how friends and family react to a chronic illness situation...maybe it's b/c most folks don't deal with such things until they're a bit older. ..maybe people don't know how to react b/c they haven't experienced similar situations themselves?
Snh--I'm so sorry you are experiencing difficulties with work issues, too! I have found working to be very hard, but the income and health benefits (and ability to work from home) have kept me at it. It certainly seems almost impossible to contend with employment/financial issues when our health is topsy turvy. I am very glad your dad is there for you during this. My mom actually told me to go out and find several new work options right away...I was thinking, is she crazy? I'm having trouble getting the laundry done, picking up toys, etc. In addition to being tired of talking about the illness, I think she is worried about helping us financially if I don't have work.
I will look into the therapy idea, or maybe there is some kind of support group around for dizzy folks..I remember Howie mentioned something like that in his area. I'm also going to ramp up my efforts to come to some conclusions and treatment options. I guess I thought time would result in more improvement than I've seen yet!
I just saw your note about the sinus infection. I don't think the meds are working, but I'm not sure. The doc thought I might need IV meds and/or surgery, but I'm not one to leap into the hospital for surgery unless I really need it. I'm going to get a second opinion. I'm actually rather concerned about the infection and I'm wondering if it has a fungal component (sounds gross, I know ), which is somewhat controversial but can happen after root canal treatment. Also, I did get my blood work back and no sign of Lyme disease, mono, or any other obvious problem there. The doc said I should see an endocrinologist about the hormone questions and testing.
Violet, I too have a mom that is not very supportive. Or I should say she thinks she is VERY supportive. That said, I always seem to be taking the kids to her house so I can help her do yard work...but she seems to think it is helping me????hahahah.
I'd say, you can't change others...you can only change yourself. Oh, and treat your daughter differently if she ever needs this support.
I am sorry you are feeling alone. I understand. Just wait, the tide will turn, you will learn who are there for you, who are not. Then when you are well you can take that experience with you.
Sorry to hear your mom is unsupportive. Fortunately, I haven't really had a problem with anyone being unsupportive except my old boss. However, I don't really talk about it with anyone. I always wait for them to ask me how I am feeling and then I usually just reply "the same" I only really elaborate if someone asks me specific questions. That way if they get annoyed (which again no one really does) I would just say "well you asked me how I felt, if you don't truly want to know then don't ask" LOL As I said before my old boss would say to me "stop whining" and I would say I'm not whining, I'm simply responding to the person that asked me how I was feeling. Funny thing is if she had to walk one day in my shoes, she would never make it!!!! I keep that inside my head and it makes me smile to know that I am much much stronger then her. I wish I could give you some advice but my friends and family have been very supportive through this whole thing. My best friend has sent me a card once a month since this happened. I have only been dealing with it for 9 months though so I am sure at some point people will lose their patience.
Violet, sorry to hear your sinus issue hasn't resolved. Maybe IV fluids might be the ticket. It sounds like you should see someone else about it first though. Something seems off in your doctor's diagnosis of the situation. Was it the dentist who did your root canal that prescribed meds for you or another doctor?
Maybe an ENT is a good place to start (or a new one if you've seen one already).
I'm hanging in there. The vestibular rehab has uprooted all these extra symptoms I hadn't dealt with before. I'm going to the same place, different PT, to discuss my neck some more. He doesn't think I have cervogenic issues but my neck is quite out of alignment and weak, arthritic all that, so he'll work on that. Woo Hoo! Another issue to tackle. I want to get this all sorted out before the end of the year while I've paid my deductible!
I made another appt with the other PT (one that deals with vestibular/inner ear/neuro) to discuss these new symptoms and find out if this is normal reaction to recalibrating the system or if perhaps I have more crap going on.
I'm feeling like I should have just left well enough alone and not start the VRT's, but the PT's and everything I've read mention it's good to get your system working again. I think I might still have some residual BPPV going on.
So it's neck/TMJ and getting my vestibular system back in balance again. Those are the two things I'm concentrating on right now.
I'm thinking I may switch the PT for neck with a Chiropractor I spoke to awhile back. I feel like I'm wasting my time with the PT. And I have to get someone to get in there and really work on it to loosen all those taxed muscle and myofascial tissue.
No one is really giving me any sound advice, that's why I'm so frusterated and trying to do things on my own. Good or bad, I have no idea. It's hard to stick with something that isn't working is all. You just go into the hole with bills and your condition never improves, it's just upsetting.
I hope you come to some conclusions soon and that your mom comes around with her thinking as well.
I can relate to your yard work scenario! But you are right, this experience does seem to teach us a lot. I absolutely can't wait for that tide to turn. What a relief that will be--for this time to be a memory! Thank you so much for your words of encouragement. I hope you are doing well.
You are indeed blessed to have good support during this hard time! Nine months is still a long time to deal with this--I'm at 6 months now, and it has been way too long as far as I'm concerned!
I think it is very worthwhile to try someone new to get a different perspective. Today I made several new appointments with folks (a different ENT and neuro) who have good reputations as far as I can tell. Today I also met with a different endodontist (root canal guy) who was fabulous--he was super smart, was very thorough...he took the time to explain things and answer all my bizarre questions. Hence, I trust him. (He thinks the root canal looks good...no evidence of trauma/mistakes/etc.) Anyway, I think that's what we need to find in our PTs, neuros, and ENTs...I know those good folks are out there. We can do a lot on our own, but in the end I think we also need an expert who is on our side.
I wish I could offer some insight into the tmj/neck issue, but I know nothing about those situations. I have no neck problems, but I've had TMJ for probably 18 years. It's never seemed to cause me any big problems, but it's all a mystery to me at this point! The chiro sounds good. I've been thinking massage would just make me feel better in general! Do you use things like heating pads? I just got some stuff like that for the head, neck, etc, and I find them very soothing. Good old-fashioned treatment, I guess!
Maybe the rest of the year will hold some answers for us...
Violet sorry to hear you are having problems with your family it cant be helping hoe you feel. I agree 100% with Charlottes first post to you on this thread. I was the same alsways there for everyone else, so it became a bit of a shock to them all when I couldnt be. My sister didnt understand, but she is the one who craves attention so the though of her having that attention taken away from her is probably the reason why. My mom was not too supportive but they do live 2 hours drive away, she wont drive long distances and I couldnt so we didnt see much of each other, but she has now been diagnosed with VN herself and is always on the phone to me as she says I'm the only one that understands. As for my darling husband and 2 teenage girls, well it's not until now when I feel almost normal that I realise how much this affected thier lives, but they have never once lost tempers, thrown tantrums (as teenagers do) or not been there for me.
As for work I'm self employed, if I dont work there is no pay so I had to drag myself into work mode at some point daily or this ship would have well and truely sunk!!
It may be a good idea to ask you mom to go to appointments with you, perhaps if she can see the docs are serious about it then it would change the way she sees it.
Dont forget we are always here for you to vent to.
You are so sweet--thank you for your note! What a coincidence that your mom experienced the VN as well...my mom was sick for a few days and at the time her compassion was momentarily expanded but it must have passed . This does have a huge impact on the family, doesn't it? I know my husband is stressed from having so much more on his plate. My children are young and pretty accepting about what's going on, but I just feel bad that I can't do all the normal things with them right now. I have been able to rely on my brother; he deals with my frequent calls and medical updates with humor...and it is nice to be able to laugh about this sometimes.
I am so glad to hear that you are nearly back to normal again! Isn't it amazing how wonderful good health can be? I never thought I took it for granted before, but I will be on cloud 9 when I feel like my old self again.
This really struck a nerve with me because although I have a very supportive network of friends and family, I have been at the receiving end of "well meaning" people who have NO idea what I am dealing with and their comments bite rather than soothe; they are quick to offer opinions, but slow to help out.
First, always remember to stay true to yourself, which means that you are going to have MANY days where you want to turn to someone for emotional support, or even physical help with something.
DON'T stop venting or talking just because someone else doesn't understand or feels uncomfortable. That is THEIR issue, not yours.
Unfortunately, some people have compassion that only goes "so far". Whether it's because they truly can only give "so much", or break too easily in the face of something scary or sad. It doesn't make them a bad person, it only means that maybe that person isn't the best person for you to take comfort from when you really need it.
I tell you what, give your Mother this website, point her in the direction of this specific Board, and let her spend some time reading about the ups and downs of dealing with a chronic, limiting condition.
Your Mother doesn't realize how lucky she is that she HASN'T been in your shoes. It's her ignorance that leads her to make hurtful statements like SHE "can't take it any more". She has a choice - you do not.
What you can do for yourself:
Start journaling. The great thing about journaling is that you can "get it out" anytime, any place. Venting is very powerful, and you don't always need a live person to "get it out". There was a time for me when ALL I did was talk about my head symptoms. There were not enough people available to keep up with all the feelings I had to get out - so journaling allowed me to rant, rave, moan, get out every-little-thought as soon as it surged over me. Journaling has been proven to be very carthartic and healing. Start today.
Grab some counseling. Counseling helped me react differently to my situation, and allowed me to find different ways to spin my thoughts, so eventually I didn't need to vent s-o much, all the time. I learned that I was more in control than I was giving myself credit for.
Let go and forgive those that don't, can't or won't understand. You can love someone even if they disappoint you. No matter who you surround yourself with, there will be people who don't understand, who hurt you with or without meaning to, and who will fail to support/understand you when you need it/them the most. Everyone has limits. And, people are ignorant. It just makes YOU more compassionate, so eventually, you will be the staunch supporter of someone else who needs it - and you will know just what to say or do to help them out of darkness; where someone else can't. So, be patient with those that "can't" or "won't", and eventually that void will seem less, when you realize you are "okay" without some supports.
I hope this helps. Take care.
Last edited by Wowwwweeee; 05-27-2008 at 03:39 PM.
Thank you so much for your note. I will indeed follow your suggestions. In fact, just now I tried writing down some things that have been upsetting me...maybe that way I can let them go, not hang onto them in my head. It has been difficult lately...just realizing the condition isn't going away like I expected it to and having to fight to keep my job, all without much support on the home front.
My spouse has also seemed out of humor and even downright unkind lately...I think frustrated with my limitations. He thinks if I make an effort to get out of the house one day to do something "fun" (like a short walk or quick visit to a store with my daughter) that that means I am capable of doing the usual work around the house. He doesn't understand that if I don't get out, no matter how challenging it is, then I am even more depressed--I really have to see other people & the world outside from time to time. Even when I was at (almost) my dizziest and could barely drive or walk, I did sometimes anyway for very short excursions to keep my sanity. He's probably tired from holding down the fort, so to speak, but it's still hurtful sometimes.
But your note did lift my spirits, so thank you again!! I'll keep hoping for the best and try to find different outlets for dealing with this. I have to believe that this situation will get better--either through time or meds or through learning how to make peace with it.