Maybe I am just frustrated and depressed because I've been having so many bad days lately but I don't understand why family and friends can't understand what it's like to have TN. I am tired of being asked why can't they give you some medicines to "fix" you or why aren't your new meds working. They don't seem to want to understand what TN is or why I may feel fine one minute and in extreme pain the next. One family member even told me I needed to "get over it" and be a part of the family again! They don't get why I don't plan things or have to cancel at the last minute because the pain is flaring up. I try to do what I can and use every good moment to enjoy life as it has become. I am having trouble excepting that I can not do some of the things I used to do but still do what I can. I am thankful that I have a supportive husband and daughter but even they do not always get me. My husband will invite 10 people to the house for a cookout and not consider I may not be able to participate. it is so hard to have all these people and all the noise and have to run away to the bedroom, take anything that might help the pain, and lie down. I can't know why the breakthrough pain will hit but there is a fear of it that causes you to limit the number of people around, the time they are there, the noises, and any triggers. Any suggestions?
I am feeling the same , I feel like people do not understand ! I am just trying to get thru and my job it is so hard to deal there at work , no one really gets it ! Sorry I am not lifting you up just struggling too !
Thanks for replying Annie. It really does help to just have someone understand. I have not worked or driven since March and it's so hard. There is the guilt of not being able to work. The loss of independence with not being able to drive. The stress that it puts on your finances with only 1 income. It is hard to be uplifting and happy. I tried to work as long as I could, hiding the illness and doing what I could until I ended up in the ER. I am supposed to go back in August and I am scared to death. I don't know how I can do it. Just know that I do understand. If you would like to tell me more about your situation I will listen. This is how we learn to deal with it I guess.
Virginia Girl, I’m so sorry! I know how frustrating it is, especially socially. You can only take one moment at a time. Easier said than done…I know!
What works for me, I try and educate my close family and friends on TN, some are more open than others but at least they can understand it a bit. I bought the book “striking back” (which is great if you don’t have it yet) my husband will take a look from time to time so that helps some. I definitely don’t push the TN info down their throats but I mention it from time to time to remind them that I still have it, because physically I don’t look sick. I also never commit to any plans knowing that I may not be able to make it or have to cancel last minute, so I’m always a maybe. Thankfully most of my family/friends understand. Whatever way you look at these situations, we just gotta do…what we can do…when we can do it. LIVE FOR THE MOMENT!
I wish you well and hope you will find some comfort in knowing we are here for you @ livingwithtn.org and understand how you are feeling.
~Erica
Virginia girl , Thanks I am a 48 year old Maryland girl that was dx last march and had to take a month off of work and I have returned and I am in the Dental field and I feel like everyone is waiting for me to make a mistake and it is a pedo clinic so it is very stressful ! I really want to quit but I have all the health insurance benefits and a lot of pressure with kids in college ! My husband is wonderful and is trying to get health insurance in case I can no Longer work ! I am just doing the best I can and I have to take so many meds to manage the pain ! I just try to take as little meds at work to handle the pain , just hang in there and try to enjoy the few times you are painless !
Erica328 said:
Virginia Girl, I'm so sorry! I know how frustrating it is, especially socially. You can only take one moment at a time. Easier said than done...I know!
What works for me, I try and educate my close family and friends on TN, some are more open than others but at least they can understand it a bit. I bought the book "striking back" (which is great if you don't have it yet) my husband will take a look from time to time so that helps some. I definitely don't push the TN info down their throats but I mention it from time to time to remind them that I still have it, because physically I don't look sick. I also never commit to any plans knowing that I may not be able to make it or have to cancel last minute, so I'm always a maybe. Thankfully most of my family/friends understand. Whatever way you look at these situations, we just gotta do...what we can do...when we can do it. LIVE FOR THE MOMENT!
I wish you well and hope you will find some comfort in knowing we are here for you @ livingwithtn.org and understand how you are feeling.
~EricaThanks for the advice Erica. I hope that some way it will get better for you! Either way I am trying to live for the moment too!
I'm sorry Annie! I am scared to go back to work but I know I have to try. It is so stressful because you do not know what each day will be like and people just don't understand if you suddenly can't do your job. I hope it all works out for you! It seems like we do have to just remember to seize the moment instead of the day!
Annie said:
Virginia girl , Thanks I am a 48 year old Maryland girl that was dx last march and had to take a month off of work and I have returned and I am in the Dental field and I feel like everyone is waiting for me to make a mistake and it is a pedo clinic so it is very stressful ! I really want to quit but I have all the health insurance benefits and a lot of pressure with kids in college ! My husband is wonderful and is trying to get health insurance in case I can no Longer work ! I am just doing the best I can and I have to take so many meds to manage the pain ! I just try to take as little meds at work to handle the pain , just hang in there and try to enjoy the few times you are painless !