I wish there was a way for my boss and coworkers to understand my pain. No matter what i say they dis it off like it's a headache. I missed Monday-Tuesday and came in half day yesterday. It's just hard to work for a group who doesn't understand what you are going through. I've been here almost a year and now they want something completed by my doctor (who only has known me for few months since my other neurologist retired). I just wish they understood the tears it takes to get here and stay here and how horrible this condition is. This is the worst it's been since gamma knife and surgery and there are no options left except a stimulator that no one can find to put in. I've exhausted all meds. Just is hard.
I've been there,it is awful, and my coworkers were being fairly understanding. My Dad is going through Chemo treatments, his treatment is going as well as cancer treatments can, but one of the side effects is temporary Neuralgia in his hands and face. I feel bad that he is in pain, but it makes me feel so much better when he can understand even part of what I feel.
Before I was diagnosed I spent 4 months in constant pain, and I woke up from my 3-4 hours of drugged sleep to the sound of my own screaming almost every night at 3-5 am. When someone is trying to tell me it can't really be that bad I tell them that story. I have yet to meet someone who didn't shut their smug trap after that.
So sorry to hear about your dad. I've had this for 24 years. i'm 40 now and it seems nothing works, I've tried almost everything but it's just hard when no one besides your immediate family who see you suffer get it. I told one lady today, while you all think I'm at home watching TV, you do realize I'm under powerful meds and can't even give my 3 year old a bathe and play with him due to the pain. It doesn't just rob me of my job but my life.Now, I have to get some form filled out as I like 2 months for being here a year. I took this job for less stress and I don't know what happens next. I've tried so hard to not let this beat me but at times, it feels like it does. Hugs to you too!
Lucky for us my dad is doing really well, but it has been a rough couple of years. I am 25, I was out of my parents house and living perfectly independently for 14 months, then ATN started. I am now 16 months into having this constant pain in my face, I live at home and I struggle to work part time. The medications bring it to a "low" level I can live with. At least for now. I have literal panic attacks if I think about the future and what will happen when I build up a tolerance, so I try not to think more than a month in advance anymore, bonus, I have such a bad memory now, if I make plans more than a week out I will certainly forget them. I feel like a different person, with new goals, it is so strange what this nasty pain does to you. I tell my friends that "if I am lucky, I won't live super long" it freaks them out, but I really don't know if I would want to live past 60,most days I am SO done with this crap now.
I know what you mean about work. My work doesn't care what is going on in my life. I kept calling out and was told I need a drs note. I passed out in work from the dizzy Ness from the meds. They don't care if I fell off the earth. Hey do you have a hard time in the morning with all the pain. Enjoy your night
Well, I now have received a note from my boss to give to my doctor to write a letter on any restrictions and recommendations he has to help me do my job. Because I'm missing so much. If the pain would stop, I wouldn't have this problem. I don't even know what to tell the doctor, he's the one who has told me he didn't see how I was working in this much pain in the first place. I mean, I'm on every medicine to man at this point and nothing is breaking through unless I'm asleep. Why am I working? I can make more than my husband and carry the benefits. I don't just do it for me, I do it for my husband and my child. It's nothing on my husband, he works. He'd be more than happy to find something with better pay but he doesn't have a degree like I do or experience. His experience is in ministry and he's great at it. I just don't want this illness, after 24 years to beat me by taking my job. I don't want to lose everything. I've already been down that road when my dad died and I overly stretched our finances. I was told to call HR and everyone was on the company's side, I don't have an advocate. I switched jobs last June because I needed less stress and to help myself, if I had almost 2 1/2 months, I could file for intermittent leave but they don't want to wait that long. Here is the real kicker. I have letters that are gleaming from the department division head of what am amazing job I've done the first six months but no one will help me now. And, I honestly don't know what would help. This is the first time that I've ever had a job that they had treated me really good and I've been so happy and look forward to it. All of my life I've sacrificed days to sleep for this illness and I just don't want to lose my job but no one can help me. Am I depressed? Yes. But it's because of pain, it won't stop and no one but my family cares. I'm thankful for them and God. I wouldn't be here right now if it weren't for my husband and child.