I just need to vent and here, at least, there are people who understand and aren't going to try and "fix"me.
...I'm currently on a large dose of tegretol and a smaller dose of neurotin, with instructions from dr that i can increase the neurotin if i need to. I also have a job that i must drive to. So sometimes, i have to NOT take enough neurotin to completely stop the pain so that i can drive to work. Sometimes i have to NOT take enough neurotin to completely stop the pain so that i can function AT work. Family and friends just don't seem to understand that i might have to be in pain so that i can drive (safely) or so i can not be a danger to myself or others at work.
I keep getting either the "honey take what you need to not be in pain. stay home from work if you need to.". OR the "well, the pain must not be too bad then, if you can pick and choose when to take the medication"
If i don't work..my family is homeless. I AM the one who makes the mortgage payment and pays all the bills. I AM the one who keeps food on our table. My significant other does not make enough to pay them all. Those things don't go away because i hurt today.
And just because i know i need to function in order to work, does not mean the pain is just an insignificant thing that i'm blowing out of proportion.
People just don't understand the ..resolve and determination this requires from me every day. They just don't understand the emotional fortitude it takes to live like this. They don't understand how tired i get sometimes. I'm so tired..., of being in pain, of trying to go on anyway. I'm tired of being looked down at as some kind of attention seeker or cry-baby!
But mostly, today...i am ANGRY. At anyone who's never had to deal with this. I don't wish it on them (or even my worst enemy) but i wish they all could understand. Just understand what it's like...
(ok that's all..thanks for letting me vent. Time to blow my nose and clean up my face and get ready for work.)
I understand !!!:) I think the dr dont even understand!!!! I think a lot of us feel the same way u do...I also work I am a teacher I dont think my boss would want me to be at work high as a kite...lol have two small children and I feel like my husband doesnt understand my level of pain sometimes!!!! Venting is good I only can to it on here as I fell no one put others like us understand!!!
I understand too, we can get compassion and sympathy from others but unless you've been through this you cannot understand what a complex physical, emotional and mental monster this is. Eventhough I have not had pain in a while, I and my family still live in fear of it. I am so thankful for this site to come to, to vent and especially to research. You have a lot of responsibility and you should be proud that you take such good care of your family. I am a big believer in Hope. Know that we are here for you.
I was having the same problem because I drive about 200 miles a day for work and deal with angry people for a living. I could skip the pill and be distracted by the pain or take the pill and not go to work at all because I couldn't figure out how to start my car and it was just too much like work leave the house.
If you haven't tried it already, Lyrica frequently has fewer side effects. I'm taking it with Tegretol XR and it seems to do the job.
I accidentally got my doctor to pay attention to what the meds were doing to me. I carefully timed out my meds so that I could make it to the doctor and back... and then his new nurse "lost" me in the room for 50 minutes. By the time the doc walked in I was so stoned and out of it that he wouldn't let me drive home. I left with instructions to stop the Neurontin and start the Lyrica that day.
When I was bitching at my new neurologist about being tired and brain dead he gave me Amantadine. It made all the difference in the world. I'm still brain dead (turns out that wasn't a side effect), but I don't have to take a three hour nap every afternoon and the extra alertness makes driving safe.
Getting family and friends to understand is an uphill battle because we have a weird type of medical problem that actually does allow us to make a choice even though both options kind of suck sometimes. If you ever figure out how to do it, let me know because after 10 years my dad still thinks what I have is headaches. He can't figure out why I don't just take my "aspirin" when I get one.
Thanks you guys for listening and replying. It's helping me a lot to have this site available to be able to talk with others who understand. Although the pain has been with me for years, i was only diagnosed this past june, so dealing with these meds is still new to me. I'm still working on finding a combination that is acceptable.
@ayre ...Yeah, my boss wants me to come to work, so they won't be short staffed..but i'm sure she wouldn't want me there all drugged up to the point of not being able to hold a thought. I'm a cook supervisor in a health care facility. I need to be alert enough not to burn someone or cut my own finger off. lol
@Shawna...thank you. It really does help to hear someone say positive things. And yeah, i remind myself everyday to hope.
@Tina..i've heard Lyrica mentioned before. It is something i'm going to ask about at my next appt. As well and any other options. Being a sleepy zombie is just not cutting it. I, too, have to take naps in the evening because i can't stay awake long enough to take my midnight dose of meds. And yeah, as for my mom and dad..they still think it's a toothache and that i need to find a dentist. God love em! lol
I was a social worker for the state - and finally could not drive children safely because I first tried Neurontin and then lyrica
- had to quit a good paying job - so I researched here night and day - and found the idea of lidocaine patches RX topical relief = I could lower my trileptal meds and function - and use patches PRN
thank you Kc..i'm not even sure what lidocaine patches are..or how i'd use them inside my mouth, but i'll ask about those too. Are they like those nicotine patch things? or do you have to put em right on the spot that's hurting? Will they work on wet surfaces (inside my mouth?) I'm just so new to the medical part of it. I"m still learning what to ask about and what to say..
I'm really sorry you had to quit your job. Really. ...because i'm thinking i may have to do the same soon and it just kills me to think of the mess that's going to entail.
I'm very glad i found this site. I really need the support from others who know what i'm going through...
Mistee, I know so well what you are talking about. I am sorry about your day in day out struggle to just keep going, to say nothing of the pain and the emotional and financial pressure. It hurts and all the well-meaning people with their ignorant, calloused words just make it worse. Hang in there! You are in my thoughts and prayers!
I know others mentioned it, but Lyrica does have way less side effects. I was on neurontin for a few weeks...until I had an allergic reaction, thankfully. I was a zombie and cried all of the time. The allergic reaction sucked, burning itchy rash all over my body, but I no longer had to take that crap. I'm a stay at home mom of a 10 year old, 4 year old, and 2 year old and it was so hard trying to take care of them while on it. I can't imagine having a job outside of the home. Lyrica makes me feel a little stupid, but I might have been before all of this. ha! I will be thinking of you...
Mistee,
I know this so well. I’m the one who has the insurance for all us, makes the money to pay the bills, and am so dang tired. This last August when I returned work I did let my boss know that hey I my have a mud for thoughts at time, my have moments of pain, and have medicate that may makes so I fall asleep at my desk ( which I’ve done by the way). I also told him exactly what I have and that yes it can become serious if my medication ever stops working. Also I may have days where I need to leave work early or not come in due pain. It is only now that my work is understanding. This is a huge relief for me. Though I still have to time my medications so I’m not all doped up and driving at the same time. It is really frustrating to have the pressure of being the main provider for the household. I’m hoping in couple of more years this will change. Till then I just tough it out. I’m sure you are doing the best you are able to, but remember try not to push your self to hard, I think this maybe what your friends and family are worried of or they may not know what to say to you and are saying what they think you might want to hear. It might help to let them know you know their intentions are for the best but you would rather not have these suggestions but rather a simple word of encouragement instead. I hope you had a great day and it was pain free.
That sounds just about like the situation i'm in. I"m sorry that i'm not alone! lol
Also, you are right about my friends and family really meaning well with their words. They just don't know what else to say i guess. My husband is slowing coming to realize that he doesn't have to fix it or do anything; i just need to vent and cry and having him hold me is enough. Or if i'm going to work in some pain..to just let me know he loves me and to drive safe or something. He's getting better.
I think it's helped a lot that we finally got a name to put on this horrid thing that was consuming my life. It's a "real" thing.
Well, anyway...i'm really glad i had a place to vent all this the other day. I was so angry and frustrated.
God bless you, I know exactly where you're coming from. I had to take extra meds last night as my pain seems to be getting worse lately and I feel like my brain has turned into marsh mallows! and my arms and legs dont seem to want to move this morning. Luckily no work today but I would like to be able to function. My husband is wonderful and rea\lly helps but unless you are in this situation noone can understand what this is really like. I'm sure people get fed up with my moaning because sometime you just cant help it because as you say its so hard with either being in pain all the time or feeling half asleep and drugged up. And as we all look like we're not injured people just say 'but you look really well' AAAArgh!!! It doesnt hurt to have a moan and vent so go for it. Thats why we're here. It does help.
Ive just taken some Pro Plus to wake me up a bit. I find this helps and if you can force yourself to get out excercise is wonderful. I run when I can if I can go first thing I find that not only does it help with the pain it will give me energy and help keep me awake for most of the day.
*hugs* omg what a stress!! i literally had to stop working because with the correct dosage i was strung out and with less i was in pain and shaking, thankfully i am able to have money anyways but.
Ugh its so hard with family, you know they love you but sometimes they just say the wrong things as they do not fully get anything. In most countries both your meds will have a symbol on them stating that you cannot drive or operate machinery while taking them, no wonder you are frustrated.
Im sure if you had the choice you would stay off work and try to work it out from home but for the safety of yourself and others on the road you knowingly lower your dose..feel frustrated for you that you have no been put on a disability money or something.
My boss insisted i come into work anyway and i cried all the way and when i got to work i accidentally cut someone and myself with scissors and then she told me off!as the day went on my meds hit me more ad they are slow release then all i could do was sit on the floor in the staff room with my head in my hands while all the staff laughed and said if im that bad go to a hospital. i wanted to kill them. When i showed my boss that i shouldn't even operate machinery or handle sharp objects her reply was 'well my friend who has migraines shouldnt drive but she does and so do i and i have a migraine every day! (complete lie..she would not know a migraine if it kicked her up the arse)
Sorry, talking about myself selfishly! Ahem, anyways i can totally see why you are angry but i hope writing here has calmed you a little..most people feel there pain popping up more when they are mad so try to stay calm hun. While you must respect your employer to a level your job serves a purpose for you, you are not a slave...do you know if you are able to apply for disability at all? xx
i'm thinking more and more about applying for disability...or at least finding out how. Although, you can't be working if you apply for it, right? (and i have to work...) Plus i think i read somewhere that you can't apply until at least 6 months after being unable to work.? I don't know...it's just so complicated that i can't deal with it....
As for my boss...she doesn't really believe me, but i got my dr to write me a note saying it's a day to day thing and that i may have to miss work on occassion. So, i have a standing dr's order. But it really upsets me to know that i'm being assumed a liar. I know i shouldn't care what she thinks..but well..i'm not lying. My coworkers on the other hand, are actually rather sympathetic. They don't know what TN is but they've really seen the pain i've been in and they are so kind to check on me. If i'm looking down or in pain, they'll if i'm ok; am i in pain, etc...it's nice to know they believe and care enough to ask, i guess.
Your boss just sounds evil. I"m sorry she said those things to you.
i sympathise darlin, i had a meetign with my boss and dr and my boss tried to insinuate i have changed dr 4 times the last year to get a sick note and claimed i told people i had a cancerous brain tumour..(all lies)she thought i was too dumb to understand her norwegian but i understand it alot better than i speak and my dr actually jumped to my defense and told her what she thinks my situation is , is irrelevant because she knows my full medical situation and that her innapropriate comments do not helo anyway.
I am not sure on the law in america with disability but i did see there is a section on the site about applying for it..if the 6 month thing is true perhaps you can apply for a crisis loan until that 6 months passes?
I know how stressful and awful it is when u fear you can lose your job or not pay your bills but you should be entitled to some kind of free legal advice, if you cannot work you cannot work, you have proof of an undelying condition, you have been sick and forcing yourself for months im sure..i pray you will have some respite..those laws exist for people in situations like yours and while it is irritating as hell to get it sorted, once that is off your shoulders, it helps remove a horrific anxiety that only serves to increase your sickness <3 *big hug*
p.s yes she is evil..she is the norwegian version of cruella devil walking around in her stupid fur coat like she owns everything and flirting with any male with a pulse, with the ammount she smokes its a miracle she hasnt kicked the bucket yet and my only good thought of being off work is that for once she has had to run her own stupid business rather than take advantage of other people who are not so aware of there rights.
The main thing that got her off my case was my boyfriend contacting her saying 'melissa may continue to work for you as she is too nice, but i am watching you, i know you are breaking labour laws and dont think i will hesitate to report you if you carry this rubbish on. I am norwegian and i know her rights, so sort yourself out!
The law is there for a reason, use it as much as you can to your advantage, its not stingy , its not sponging..its your RIGHT!