I have been crushed by the last 3 years of my life. I am struggling to maintain my life and its commitments with this stupid illness. Does anyone else feel this overwhelmed?
In a word, yes. I went down to part-time at my job two years ago, now I cannot do that due to pain and/or fogginess. I am uneasy committing to anything because I have no idea how I might feel. I also have fibromyalgia, so I'm not sure how much it plays into both the memory/confusion part and the pain.
I've been referred to a pain clinic, so perhaps they will have something. My neurologist said that whether I deal with the pain or use the meds I will most likely continue to experience the thinking problems. This is very tough to deal with and yes, overwhelming.
At this point I need to rethink and then redo my life. I'll be applying for SSDI; I won't be able to work as I have, but I do have things I enjoy, so I'll have to concentrate more on them.
I think those of us with TN/ATN are very strong, resilient people and while we many get overwhelmed here and there, we will find a way to get through.
Pam
Thanks Pam. I now have a failed relationship to add to my list of wowes. My ex partner says he can’t cope with my illness. All very difficult. By thinking problems does your neuro mean the slow cognition and fogginess? Even when meds are withdrawn?
Helen,
Yes, my memory and cognition have gotten significantly worse in the past six months and the only med I was taking was Savella for my fibromyalgia. But this type of problem is fairly common with fibro as is the pain. Each doctor, the rheumatologist for the Fibro and the neurologist for the TN want to treat the two separately, but I think it is the combination that is making my problems so bad. Hoping the pain clinic will be able to take both into account.
I'm so sorry about your relationship; this disease is so very hard on our significant others. I've been lucky that I have an understanding husband, but I still am afraid that with our finances being cut in half from my not working that we will have a very rough road ahead.
Take care,
Pam
You are very lucky indeed Pam. I’ll manage. It was just all a bit much this early on in our relationship. I hope my brain improves I am feeling quite frantic about money right now x
Overwhelming, yes it is, but yes we are strong! I am so sorry about your relationship, just an added blow. I understand your fear with finances, that just adds to what we are already facing. 3 years ago my husband became disabled, unexpected, in hospital 2 1/2 years, leg amputated, in wheelchair, kidney failure, long story. But somehow TN and all we have gotten through, he is not out of the woods with things, but home. We lost 40% plus of income, he is on SSDI, but I have no insurance, had not worked outside home in years and can't afford to get current info for me to get SSDI. But somehow we have survived. I do concentrate on my joys, which are mostly my Saint Bernards and cats. Show my Saints, do therapy work when I can, etc. Have had TN 7 years. Only feel foggy when I have to increase Gabapentin. Vent here and know we truly care. I do have my bad days, angry, mad, sad, but gotta do our best to keep on and I know there are times that is tough. Be good to yourself!
Very overwhelming, yes, very much so! I too have gone to working just part time and struggle with that some days. I heard someone say once that they "refuse to let my pain define me" That is all well and good on the good days, but on the bad days....................................... I try to put on a happy face and not worry my husband and kids, but they know when I get quiet and withdraw a bit that it is a bad day. There is no point in dwelling on the bad, but it is so hard to keep on keeping on when you hurt so bad for so long! My family doctor was the one who finally got to me. I wrote her an email one day when I was having a really bad day. She responded by telling me to quite beating up her patient! When I felt like I was letting everyone down, my doctor told me that compared to others I was working circles around others. I was working full time, being a grandma, and mother and daughter to an ailing mother. And all of that time in great pain, while others take for granted their daily movements. So long story short - you are not alone! Cut yourself some slack. Find some things that you enjoy doing, just for yourself and enjoy life to the best of your ability (which we all know changes so much day to day)
Thank u ladies xx
I just started cymbalta 1 1/2 weeks ago and I am 120mg/day now as well. It seems to be working great together with the Gabapentin to reduce the pain, but the side effects are so difficult to cope with while working! I have difficulties sleeping, dizzy spells, tiredness, nausea, sweating - add all this to the way Gapentin works on my brain (forgetting how to speak and write!) and staying in my job seems more and more unlikely to me. I wonder what my colleagues must think...
Helen, I understand how you feel and wish you much strenght!
Shindig, I hope you will find a combination of medication that works for you!
It feels too hard today. Injections r the next step for me. I’m low right now and crushed by how my life has fallen to pieces.
I know how you feel. I struggle daily with a job that I love that has become very stressful because of all the cognitive issues. My primary care dr and my Neuro both have told me I need to go on permanent disability. My Neuro has said “It’s better to quit than to get fired”. ( this dr never beats around the bush). It’s really hard.
Really. What is your job? I’m scared I’ll get fired. I’m scared all round if I’m being honest. I have to find a set of balls somehow!
Hi Kim, Hi Shindig. My coworkers are really good. Because the Bells Palsy was so embarrassingly obvious, all friends and colleagues have known about my illness from the start and management have regular updates about my meds. Its important as I work with children. This is part of the reason I struggle so much, its the responsibility of it all, I have a duty of care. I think my mind is pretty made up to begin applying for new jobs come September. I really am not up to teaching and so Im going to take on a new challenge maybe retrain eventually. What do you guys do?
Kim said:
And like you Helen . I am afraid certain people would not be quite as understand
I'm so sorry you're having so much trouble. I am just at the start of my TN jounrey, but I am so glad I have found people here with the same problems. I am a police officer and I am terrified that soon I won't be able to work because of this. I want to scream sometimes because it took so long for them to figure out what was going on, but then I think what difference would it have made. Hang in there, don't let it beat you.
Greetings, I've had ATN 2 for several years now. I've really only worked part time during that period as it was all I felt I could do. Yes I understand what a crushing effect it has on your life. I've spent so much time living with it I've pretty well forgotten what normal feels like. The opioids give me a little relief but they are not a full time answer. I use them as sparingly as possible to maintain their effectiveness.
But I keep getting up every day. And I've done so for years now. And so I count that as an achievement and try to get on with it. Your whole view on life changes eventually, as well as some of your value systems. Things that were one important to you eventually become nothing. Self imposed rules gradually ease as you concentrate on just trying to survive on a daily basis. In some ways ATN 2 has been liberating for me I guess. There's no doubt I'm a different person to who I was before this disorder... so try not to resist or judge such changes as they begin to surface in your consciousness.
I see coping with my situation as a full time job. If I get any 'time off' I use it to do things for ME, things that I want to do, not things I am socially expected to do, or feel I 'should do because I am such a nice giving person with my time'. Crap. That is no longer me. I have so little in the way of GOOD time any more, that when I get it, I am NOT going to spend it on anyone but myself( as far as I can choose anyway!) It has taken me a while to accept this outlook. I grieved that the old 'nice guy' was gone for a while, but have come to accept I can best survive as I am now. To try to maintain my old self thru all the pain & nausea would eventually kill me. Yes it was disappointing to realise that the quality of my life from now is likely to be rubbish. What a way to live out your life! But it's the only life I've got so instead of asking "Is this my life?????" I say "THIS is my life". So I try live it out a day at a time as best I can. Hang in there Helen.
Helen,
Your a teacher? I am also - had my MVD April 12, was on medical leave from Feb til we started back 4 weeks ago. Whew…my body was not ready to return and I was not having hardly any pain UNTIL 2 weeks ago. The pain is coming back with a vengeance and I know it’s all the talking, cold air conditioning, constant going of teaching 140 high schoolers…
I’ve been teaching for 9 years and have really worked hard to make the culinary program at my school into something to be proud of (inherited a mess). NOW - I can’t sleep (not on any meds), am waking up - dreaming of being the classroom - in intense pain. I’ve talked about this with my husband…he so wonderful, but doesn’t get that work is bringing all of this back and I’m getting so depressed. My income is important - but - my health was so much better 3 weeks ago… I want / need to quit, but I’ve worked all my life and I feel like I’m letting EVERYONE down…it doesn’t help that my students (my second and third year stu’s) are constantly telling me how glad they are that I’m back. Ugh. Have a doc appt tomorrow - need to talk about possible disability…not sure how to bring it up. I HATE SEEMING WEAK.
Yep, I too grieve (or maybe just p.o.'ed) for what’s gone; what I can’t do anymore…why can’t it just get better and stay there…the moments of reprieve are torture.
Dear Lord, help.
Oh cris. I understand my darling. My local authority r really hard upon anyone with poor sick records and r always on my back. I’m starting this year on the sick as Im getting prepped for my injection. I’ve worked at my school for 10years and like u I’ve worked hard and helped turn our school into something amazing but now my head tells me I’m failing and she doesn’t recognise me. Heart breaking. On the one hand I can’t wait to get back but the thought of work, the lights, noise, constant demands, bright colours… I feel sick. I no I can’t teach anymore. But like u say it’s the money its the vocation. Brain boggled. Xxx
Craig and Houston i m so greatful for yr support. I’ve had some better moments this week I do take it a day at a time. This morning I’m sat with my youngest and the dog watching wizards of Waverley place!!! I can’t stand selina Gomez! Have a good day all x
Helen, what type of injections are you getting? I had my 1st local injection by pain doc into my jaw (inside my mouth like a dentist) yesterday of anesthetic/steroids. Second day is supposed to be painful (it is) and 4 to 7 days until I feel full effect. I can also have injections into the other 2 branches. It is temporary...and we'll have to see how long it lasts for me. But if I can get to 2 to 3 months between injections with pain reduction, I'll take it. We'll see how this works.
Also, you and cris describe so well my experience with work! People (including hubby) who simply can't understand how the job can bring back the pain so quickly that was semi under control while I was off.
We'll figure a way through this, probably with a number of adjustments!
Pam
Yes Pam its going in through my mouth. How was it? Like the dentist? X
Yes, similar to dentist, but goes in deeper...my husband's hand is still intact after I squeezed the crap out of it. It hurt, but it doesn't take long and I've experienced much worse just with the TN. But, I did take pain meds an hour before the appointment. Immediately after you feel numb on that side of your mouth for the next 4 hours or so. Today there is much more pain, but doc said to expect the day after to be painful...it takes 4 to 7 days to get the full effect from the steroid. Keeping my fingers crossed. Please let me know how yours goes!
Pam