Now before yall start thinking of calling the suicide hotline....I'm not suicidal I'm just tired...tired of waking up to the same pain...tired of going to bed with the same pain and not being able to sleep... it's like waking up to the same nightmare everyday...everybody that don't live this life either look at you like your a hypochondriac and lazy or they want to say stuff like we'll if you lost some weight you would feel better or if you would exercise you would feel better...I mean come on y does everybody either think they can give you the answer to your problems in one sentence or they think you are fake...so I stay at home away from everybody so I can just hurt in peace.. like I said waiting to die...rant over thanks for reading...
I do,
Not there yet, but I understand you. When the time comes, I will be ready, and NO, I am not afraid to face it. However, I hope I will get lucky at list in that and go fast, and with little pain.
Only 100 years ago people only lived around 50 years on average ::)
I pray for you.
For us
Nellie
Karleesgranny - so very sorry to hear you feel so sad and depressed and in so much pain. Yes I can relate and I definitely have days where I feel like I am just "waiting around to die" and sometimes I feel like "is this it" "is this what I was meant to do and be" on this earth? And then I have a "better" day where I do not feel so much pain and I can actually accomplish some things and enjoy life and my family and then I do not feel so desperate or alone.
We have ALL been there and done that - and I am so very sorry you are now there. I am no expert, so please do not take this as me telling you what to do...just a suggestion or possibly something to look into...I notice you take some antidepressant medication(s) - have you had those levels evaluated to see if possibly they have stopped working or need an adjustment of some sort? Also are you taking medications for pain management at all? And if so, have those been changed recently or evaluated?
It sounds to me that you need more supportive, loving and understanding folks in your life. We are here for you to listen and offer kind words.
Again, I can relate and I can totally understand with your feelings...I hope you can find some hope, strength and encouragement.
I am sending you positive thoughts and prayers.
Keep us posted.
Chronic suffering is horrible...if people only knew what we go through...we are the true warriors!!!!! I often wished I would have
gotten something that was a "fix". It makes me laugh when people with severe illness can sometimes get their life back..we, or most of us cannot. Some of us suffer a lot more as well. Years ago my SS was manageable, but its so bad, I cant imagine what the years ahead will bring? I just try and look forward to something that might help..keep moving and motivated.
Some people do very well on antidepressants..talk to your doc. Hang in there!!
Gursie
Yep.
Right now.
So sorry.
Gurs, how long have you had SjS for? I'm admittedly depressed and just started antidepressants a little over a week ago. I'm just about to start my career and got hit with this, sometimes I wish I would have died in a car accident or something instead. It really hurts me to think like that but I'm afraid of what the future is going to be like and 1 yr ago I was so excited for my future. Depressing I know...
Quote from: DryGuy link=topic=25729.msg274557#msg274557 date=1397568556 I'm afraid of what the future is going to be like and 1 yr ago I was so excited for my future. /quote]
Me too....but one year ago I knew that something was different. I had been in NYC with lifelong friends in mid March...and while walking my mouth was so dry I couldn't breathe. Drank water constantly. This was the first time I noticed the dry mouth except in the middle of the night or upon waking. I thought it was what it was like when you were old. I purposefully took three more trips last year. I think I had a premonition. :-[
Now? I can understand what granny is saying. I mean, we all die. That isn't it...it's the difficulty of living. As she stated, no one is thinking suicide. EVERYONE is thinking death ain't so bad a thought. That's all.
Not me...in fact, just the opposite. I am terrified of dying and have major death anxiety. I want to be here for my family and children as long as possible, and live as full a life as I can muster with this disease.
I will concede that sometimes I feel like a sitting duck, lying in wait for the next autoimmune disease and/or other health issue to crop up. But I am determined to do whatever I can to fight this off. I know that I might not be successful, but I feel like I have no other option but to try.
If you are feeling that miserable right now, I would encourage you to have that discussion with your doc. Do some internet research. See if there are any other meds you could try. See if your doc is willing to be more aggressive, maybe even up to something like Rituxan.
There are also other AI medications just getting approved and/or just around the corner from getting approved, so that should also provide some comfort and hope that we are moving in the right direction. A new psoriasis medication just got approved in the last month - it is a PDE4 (enzyme) inhibitor that helps modulate the immune response. Aso an IL-17 antibody medication in phase III trials right now. That one is also starting with approval to treat psoriasis, but will likely also be effective in other AI diseases (IL-17 is a known inflammatory cytokine implicated in pretty much every autoimmune disease). That one is called secukinumab, and I think it's Novartis that is developing it.
I think they start by testing these medications in psoriasis because it is one of the more visible AI diseases, and thus easier to objectively determine efficacy and results. But ultimately I guarantee you these medications will be tested in other AI diseases and eventually there will be something else available to help us.
Don't give up!!
Karlessgranny,
I feel this everyday and have told my husband this. Its hard living each day when your symptoms control your day and are always there. Living is hard but I dont want to die but I want peace and happiness again.
Kimberly :'(
I am getting worse because of where I live there isnt much in the way of treatment. I can barely eat now, and I am sick and fatigued everyday. The dryness is worse but I dont really notice it anymore with all the other ills I am having. I hate that I fill pill cases now so I can rem if I took them since I take so many. The thought of continuing to have to take pills for the rest of my life to live makes me want to just stop.
Up till a few years ago my life was stable...what happened? I am not living life anymore, there seems to be no happiness in life anymore. The thought that hey as we get older and time moves on the illnesses we have will also move ahead. Great I should be on a feeding tube by next year. I think everyday why bother, but I am scared to die. I want to live because I have some crazy hope they will find a cure, or it will all go away. The reality is they wont and it wont. At my GI doctors yesterday discussing an upcoming procedure to maybe widen my esophagus. She asked if the dryness is progressing..then made a comment of...I think I am getting a touch of that. ::)
Is there such a thing as a touch of sjogrens lol man doctors so flippant
Karleesgranny, I could have written the same post!
CCCourt, you put it so well... the difficulty of living with sjogrens!
Tivia, isn't it amazing at the stupid stuff people say to people with chronic illness. I once had someone tell me "oh, I have a little bit of fibromyalgia in my back too"! ???? Can you get "only a little bit"? LOL I guess if you can get a touch of sjogrens you can get a little bit of fibromyalgia and maybe
a dash of RA as well and call it the lighter side of AI's!
sassygal
Karleesgranny....I think you have come to the right place. I find this message board more helpful than anything I've ever come across. Just hearing from others going through the same things, getting their support and finding out that perhaps some of it they've gotten over (sad feelings) is invaluable! This site gives us hope and without hope there is nothing.
I think every one of us has had days where we want to just curl up, cry and "eat worms". On those days it is more important than ever to get on this site and vent or just read the postings. I try to make it a daily thing. I get on here and just cry and thank God that "at least I don't have that" or "at least my (symptom) isn't as bad as that". It helps me keep my complaints in perspective. No matter how bad your symptoms are, someone out there has it worse and would happily trade places. Not trying to sound heartless here. Just want you to see that no matter how bad it is, it could be worse and since it isn't rejoice in what you do have.
Every day above the dirt is a good day. Not saying you aren't allow to wallow once in a while. I think there is a bit of healing in a good wallow. Just don't dwell because tomorrow is yet another new day, an opportunity for things to get better. Be stubborn. Cling to the hope and don't let your symptoms define who you are. For example, I have Sjogrens but I am NOT SJOGRENS. I am a wife, a mother, a shepherdess, a nurse, a writer, a friend and a formidable adversary when the need arises.
Yes I hurt. Yes I have days where I am so dog tired that I can barely function. I have many days where I am so physically weak I can barely brush my hair. I absolutely hate those days and they drag me down like anchors. I have days where my family tease me for being tired...."What do you have to be tired for? You just got out of bed." "It's only noon and you need a nap?" "Why can't you clean this house?" Their expectations are more lead weights to drag me under. It would be so easy to just succumb. To just crawl into my bed and let life go on without me. It is a slippery and enticing slope.
No matter how bad it gets though, you have to hang on. Be kind to yourself on the bad days. Don't listen to those outside voices who criticize. You live in that body and know your limits. If you are tired, be tired not guilty. Your illness may not be visible but we all know only too well that it does exist and it is tireless in its ability to impose limits and throw up obstacles. Be water and go with the flow. Water eventually wears a path even through the hardest stone. Do what you can and rejoice in each moment of success. On the bad days, rest, recharge and strategize. Keep fighting. You are a wonderful person with much to contribute. I am sure you are still here for a reason.
Big hugs!
Karleesgranny- I notice that you are on prednisolone, which of course, makes sense to control your symptoms, but I wonder if it could be making your depression worse. My mother-in-law had been on predisone for over two years for severe arthritis when it started to cause terrible mood issues. This was confirmed as the cause when it resolved as she was tapered off the drug. Of course, the depression makes sense, but perhaps your meds need some adjusting.
Please hang in there and know that better days will come and hopefully much better treatments are right around the corner. I am so sorry that you don't feel like you are not getting all the support you need. I understand when some people say that they have suffered more with Sjogren's than they did when they had cancer and were undergoing chemo. People just don't seem to understand how serious this can be. It's not just dry mouth; it's endless fatigue and pain and new mystery symptoms every day. I hope you can make your family understand that you need empathy and support- why on earth would anyone want to spend their days unable to function if they had a choice?
Dryguy,
Ive had sjogrens almost my entire life...diagnosed at age 13, but I think it started even earlier than that. My mom said as a baby/child, I slept all the time. Im also now remembering how in grade school, I had my head on my desk most of time, and my stomach issues started way back then too. The mild gastroparesis even.
I still was able to live a semi-normal life. I started on plaquenil in my 20's, and that helped a lot. There is also a tons of other medications I would also give a whirl too..some of them can really help. I love the natural route and take tons of supplements,
but found that I need actual "medicines" to help me as well..the supplements were not slowing down the progression of my disease, and this clearly became evident to me when I stopped plaquenil, and within 3 months, I started having severe neuro issues and my SS went haywire. Its super important to find a good rheumy. It doesn't mean to have to go to a top hospital or anything, as I learned, they
seem to help the least with me anyways. A lot of us also have multiple AI issues, plus a host of other things too. We all need different treatments.
Sounds like you are young, so please don't just "give in"..try to focus on finding a treatment that works for you...believe me...I tried a few medications that really seem to help, but, because of my severe systemic yeast, I had major issues and had to stop them.
Just hang in there and take it each at a time.
Take care,
Gursie
This is quite timely topic. Death has been on my mind a lot lately. I am 62 having my first anniversary with the Sjogren's diagnosis. I have had symptoms for years. This past year has been very difficult for me. I never feel well. I have difficulty standing and walking. The fatigue is hard to manage. The dryness is not much of an obstacle and I don't think about it much. And I just found out I have hardening of the artery in my brain. The prospect of dialysis now that I am 4th stage.
I do think a lot about the quality of life that I miss. I gave up a job that I really loved and now do clerical work which I really don't love. But at least I can work a little bit. I realize that at this point I'm probably depressed from trying to stuff it and live with all the negative aspects of this disease. I constantly lie and tell people I am fine. I struggle to keep up with my son sports activities. I have no other family to help and my brother in Ohio doesn't seem to get it. I have one friend from this board that I am very grateful for because she has pulled me up more than a few times and I thank her for that. But isn't that the point of this board?
For me death is a release from this misery. There's so many more important things to do though. Right now I am looking to get my son thru college and hopefully into his first lasting relationship. I have pets that I intend to outlive. There's more than one way to be released from misery and that's to pursue a treatment for a better quality of life. I want to wake up tomorrow and the day after. In between better days will come.
I hope that you find that sliver of light to get you through this. This is a very tiring diagnosis. Hang in there.
J
Quote from: karleesgranny on April 14, 2014, 08:49:46 PM
everybody that don't live this life either look at you like your a hypochondriac and lazy or they want to say stuff like we'll if you lost some weight you would feel better or if you would exercise you would feel better...I mean come on y does everybody either think they can give you the answer to your problems in one sentence or they think you are fake...
That's why
a long time ago I stopped dancing as fast as I could to meet everyone else's "advice" and "perceptions". That, and I have never lived my life according to what people think about me anyway. What other think about me is not what defines who I am. I define who I am - simple as that. What matters is what I know about who I am, what I know I need to do to manage a plethora of medical issues as best I can and if other people don't get it, then that's their problem unless I choose to make it my problem.
You can't do anything about those kind of people who think they know all and perceive that invisible life limiting challenges are synonymous with being a hypochondriac or lazy. I've heard it all - and the last person I knew to even verbalize such an erroneous judgment on me I invited to step into my shoes any time but until that person did, she was grossly unqualified to make any such assessments on me. That squashed that bunk in its tracks.
Life is too short and too precious to waste fretting on those kind of individuals. They aren't friends, and while some may be family members, they have even less excuse for that kind of ignorance. And it IS ignorance at best.
Quoteso I stay at home away from everybody so I can just hurt in peace.. like I said waiting to die
I see things a bit differently. I suppose because I have died technically. So every day is a gift. Sometimes it's a not so good day and other times it's a good day.
But I can understand and even empathize with the feeling like waiting to die. Perhaps it does feel like that, but that is not a place I permit myself to go in my thinking. That would be a dark place to get stuck in, I think.
Yet as time goes by, and it's oh joy, NOT another symptom, like today something as simple as cooking bacon. Doggone it, taking it out of the pan was a workout. My hands wouldn't stop tremors when I'd hold the fork a certain way. So I worked around it holding it a different way, um like the way a toddler does when first learning how to hold a fork? Stopped the tremors holding it differently, but still, it's like the hits just keep a-coming.
I don't get out much, mostly as if it isn't the TBI crud in certain situations making it difficult without assistance, it's the MCS, or the asthma, so far Sjogrens itself hasn't been so much of an issue with getting out (except when eyes are flaring), or it's a pain flare.
So I take each day on it's own merit. If it's a good day, cool!! I'll get out for a bit. If it's a not so good day, well I stay in.
But I don't ever stay in to "suffer in silence", and truthfully I can't relate to that approach.
I can relate to the insensitivity of some people that have not a clue about a lot of things. Sometimes, perhaps they don't know quite what to say to us and maybe it's their way of "trying to be helpful". Other times, some people just have too much space for rent between the ears. It is what it is.
But no, I personally don't feel like I am waiting around just to die. I find myself more waiting for those occasional days when I am not so flipping fatigued so I can get out more. ;)
Amanda
Karleesgranny, sorry to hear you are down today--maybe tomorrow will truly be a much better day for you. I believe I have walked down your path a time or two. It would be wonderful to have a friend that would sit and listen and still be a real friend after the session was over and who would even ACT like they believe the things I am going through and not try to go one better, and would just SEEM like they really cared.
Sometimes I do feel a clock in the background tick tock, tick tock, tick tock, counting down until my flare is over and after a good day it starts all over and the good time is so short and the painful time is so long and drawn out. And in the back of my mind I do think about new pains and wonder what's next. I guess we should all perceive our lives as some type of queer mystery that will only be solved over months of waiting and endurance. I don't think it will be a best seller!
I haven't been officially diagnosed but am having tests. Even if I don't have sjogrens, it sure seems like something autoimmune. Anyway, when this first started 3 years ago, I was always afraid I was dying. I had trouble going to sleep because of the fear. Now, after years of feeling sick and being unable to do the things I used to do, I'm just not afraid anymore. Not of dying, anyway. Mostly just afraid of bad "flares" and additional illness ( more symptoms!). So I guess it's not the same as waiting or wishing to die but I'm at peace with it because it means an end of suffering.
That being said, I think I remain hopeful and boy do I enjoy the rare good days I have. It's like I'm superwoman. Which, of course, can lead to crashing after but I still love those good days. I'm always tweaking my diet and lifestyle to see what might give me more of them.
I completely understand. My phrase to my husband is "I am tired of being tired, and hurting all day."
I want my life back. I want to work, and play with my kids without the thought "If I do this now, I will pay for it later!"
Working in a hospital we are told pain is the 5th vital sign. Our patients pain whether acute or chronic needs to be managed. I often think how nice it would be to actually get relief from the pain with the meds I take. If I were an actual patient, my chart would be flagged for ineffective pain management.
I think, is this how it is going to be until I die? Can really put a damper on one's quality of life, happiness and future.
Take care,
Mary
Thanks to everyone who posted. I feel so much better knowing I am not the only one that feels this way...I have been dealing with this for so long it just gets so tiring to just live...As for depression and wanting to die well I do think it would be easier to just not wake up but I don't want or wish to die I'm not ready for that I have 2 grand daughters I want to see grow up... I just look at my mom and think she is in better health than me and she is 76 years old...When she was my age she was dancing and partying and living life...I just wish I could be like that... I mean anything I do I can only last 2 hours on a good day just sitting and watching everyone else have fun then I need to lay down and take more pills...which almost took me out once because I forgot that I had already taken like a could hours before.. yeah that was a trip in the ambulance and a shot of narcan... fun! So now I have to write down when I take them and I have a pill box which I hate having to fill...This disease has attacked my body my mind and even my skin...I have a stupid rash on my face that just won't go away...I think it's clearing up and more pop up...And everybody looks at me like I am a meth head or something...my family ask me what's wrong with your face like they haven't seen it before or something...I don't know I really hate to be me sometimes...but no worries I ain't goin anywhere at least not on purpose. .. again thank yall so much for your post and encouragement. ..
QuoteI just look at my mom and think she is in better health than me and she is 76 years old...When she was my age she was dancing and partying and living life..
Now THAT would bother me.. Heck at my age now, my mother was over teh road trucking coast to coast in addition to getting her degree in psychology.
Me, I had to scale back long distance drives as I needed too many pit stops (all that water sip swish swallow then eye drops at least once an hour even on Restasis), then stretching out the kinks so muscles don't cramp...an 8 hour drive road trip ends up being a lot longer at that rate...
...yes sometimes it seems like dying a little more each week. I just don't like to let myself go to "that place".
Good point about the med box too. I made that mistake once on my thyroid meds - as I hadn't done my med box the night before for the next day. Then I it was did I take them already (which I do without thinking about it) or if I didn't dare I take them justin case I didn't? I ended up calling endo in a moment of eeks.
It changes our lives - there's no getting around it.
I was thinking today about how weird it is that so much of my day is managing my meds/OTCs/supplements (total of 34 at present - UGH that includes eye stuff), coordinating that with meals, plus which can take together which need to space apart, then what time to take what...keeping track so don't run out of any really important ones (like thyroid and BP meds) - that's a fulltime job itself between doctor appts, plus daily sinus washes, keeping humidifier sterilized once weekly then BiPap gets sterilized weekly (hoses and stuff), oh and geesh is there ever enough distilled water between BiPap, humidifier and sinus washes? Nope. Uh oh, when did I last sterilize humidifier and BiPap...gulp...I forgot to write it down
And the irony? I don't have cancer or what some would perceive to be the yucky could die of stuff (had my scares that way but it always resolves in a few months - I'm not going to complain about that for sure!!) .Nope, got just enough medical issues to make any given day a challenge at best hopefully with enough energy to maybe MAYBE get the housework done and MAYBE get out once in a while to once again be able to enjoy my photography and travel around. So each day is started with "maybe today". I can't say "maybe tomorrow" as "tomorrow" is always "tomorrow" and never quite arrives to "today". If that makes any sense at all
karleesgranny...next time you get to feeling like you're feeling, look at all the things you DO accomplish which I bet is quite a LOT. While it may appear that in comparison to your mom at your age to be not so much, you accomplish more than you think you do. Even though not the things you'd want to be doing, but you're still one very busy lady. When you start listing out everything you're needin to keep track of just to manage this medical stuff - geesh it's overwhelming and I betcha those folks who sit on the sidelines with remarks such as you shared in your opening post couldn't handle a tenth of what you are on any given day.
I'm tuckered out just on writing this post...
Quote from: Alhanna on April 15, 2014, 02:21:12 PM
I haven't been officially diagnosed but am having tests. Even if I don't have sjogrens, it sure seems like something autoimmune. Anyway, when this first started 3 years ago, I was always afraid I was dying. I had trouble going to sleep because of the fear. Now, after years of feeling sick and being unable to do the things I used to do, I'm just not afraid anymore. Not of dying, anyway. Mostly just afraid of bad "flares" and additional illness ( more symptoms!). So I guess it's not the same as waiting or wishing to die but I'm at peace with it because it means an end of suffering.
That being said, I think I remain hopeful and boy do I enjoy the rare good days I have. It's like I'm superwoman. Which, of course, can lead to crashing after but I still love those good days. I'm always tweaking my diet and lifestyle to see what might give me more of them.
Boy do I understand this, I still get the fear of not wanting to sleep because I feel I may die, it comes out of nowhere. But like I said I am afraid to die and also afraid of what more is to come, how bad can I get before I beg to be put down. This is so sad and pitiful im not even middle aged yet really, and I am in worse shape than my 76 year old aunt! I was athletic my whole life how can this happen?
I am just having a pity party right now because things are rough at the moment. But if they dont get better I dont know what I will do. Its so upsetting when you try to picture where you will be in 5 years and all that comes to mind is a hospital bed or a grave. ::)
I understand what you are saying, there are days when you wonder, why bother? The way I work my way through this is to try to find meaning in little things.
For example, today I sold something on craigslist. It was a little old wooden footstool. A young man came, and he was really excited about it, and was telling me about what he was going to do to fix it up so it would look good again.
It made me happy - I'd wanted to refinish that stool, but I just don't have the energy for projects like that these days. So for the rest of the day, I focused on how excited he was - it's like my little project was going to a good home!
Not a big thing, but that's my coping mechanism - I saw a duckling, aren't they cute? I helped my (adult) daughter figure something out. Trying to find little things.
But of course, I'm not at the worse place in a flare, so it's bit easier to have that attitude. It doesn't always work.
Yall have hit the nail on the head and I am thankful for everyone's encouragement and support... Thank all of yall that have been so supportive.... I needed to read/ hear this just for my own peace of mind to know someone out knows how this crummy painful sleepless loss of memory can't get out of bed life is....not that I'm glad yall are sick just glad I'm not alone...Thank yall
I can relate with what all of you said.
I have been on here a long time now, but I needed to hear all this today.
Thanks to all of you. All of you blessed this lady today.
susanep :)
Susan,
Sometimes all it takes to turn a horrible day around is to hear from others who are suffering the way you are. The ones around us in our day to day lives do not fully understand and some will never and that makes it even worse. If not for this board we would suffer in silence and that is not productive or healing. Please take care.
Kimberly
Thank yall.....Kimberly you are so right...
I know I posted early, but I forgot to mention that I have told a few close individuals to me...do not grieve me when I am gone, be thankful that I am no longer suffering and "trying to get through"...
We all can relate to what you are saying...take care.
I hear ya! When I'm gone..don't want a funeral,
But a party! No more suffering..Amen!
Looking foward to the next life..I think my family
Understands this finally after dealing with all this.
Gursie
I have RA and sjogrens.
I have terrible fatigue and some discomfort in my wrists and feet.
I am seriously considering of retiring at 56. I had always wanted to
work till 65. A lot of our patients are elderly and say things like:
I've lived too long.
I outlived my wife and friends and I am ready to go.
I can't do anything I use to do when I was younger...why go on living?
and I usually say that I understand but I hope to live to be their age.
Then they say.....Oh no you don't.
When I was first diagnosed 4 years ago.....I thought a lot about the real
possibility I may die early of a RA or sjogrens complication. I can honestly say
now that it barely crosses my mind.
But.......it just may take me out early. Meanwhile.....I'll just live as best I can.
Take care everyone.
eye2dry
eye2dry,
That was amazing post. You are a strong person,
Nellie
I'm so sorry to hear you feel like this, because I know what it feels like. I hate going to sleep each night because I know I have to wake up to another long, painful, day of isolation and boredom. It's impossible to make any plans, therefore, there is never anything to look forward to. Luckily, and I don't know how, I've somehow been able to "accept" this new lifestyle. The days of wishing it would just end are not as frequent anymore. I stlll have HOPE that one day, after another, after another, I'll wake up and feel "normal" and be able to live my old life again. Hang in there, you are NOT ALONE.
Hi :)
I felt like that a few years ago - but I don't now. I realise, as I have said before that I am not as ill as many of you but knowing that everyday was going to hurt for the rest of my life did used to get me down.
In my case, my thyroid did not help matters. If I am under medicated a black depression descends and death would be welcome. I am now over medicated and doing nicely. I run better hyper!
Concentrating on what I CAN do and what I ENJOY doing has made a big difference too. A badly broken arm shunted me into early retirement. I spent the best part of six months sitting vegetating in more pain than I had ever been in before.
I am now very selfish. I concentrate on doing things I like to do. There is very little I HAVE to do. Right now I am painting a small room in anticipation of a visit from a 3 year old grandson this summer. I remember when painting it would have taken two days. It is now two weeks and counting. It is painfully slow but I WILL finish it.
Admittedly I have a wonderful husband, who is also retired, who pretty well took over domestic duties when I broke my arm. He really enjoys cooking and I haven't taken the kitchen back!
Concentrate on what you CAN do - not what you can't. Accept limitations and find a way round them if possible. We only got one life so we may as well live it!
Take care - Scottie :)
I know what you mean. I was telling a woman i know about trimengal neurolgia and she interupted me and said " have you tried yoga?" I wanted to whack her !!! Not being visibly sick is good and bad at the same time I guess . I look in the mirror and think I look so sick , no one else sees it besides my mother. Hope you are feeling better.
Yes, yes, yes, I've been there, particularly after I lost two sisters and a brother-in-law within four months. I was so ill, didn't know what was wrong with me and figured I was going to die, why not then.
That was four year ago. It took a long time to get diagnosis and start treatment. I continue to have issues, but I took antidepressants for a while, went to counseling, found things I could do and could enjoy, prayed and asked others to pray for me, and much more.
Eventually, I crawled out of that hole. I continue to have issues, but try to embrace the life I've been given. It's not easy, but I work with elder and see them living with such strength, dignity and resolve (along with horrible illnesses) and figure if they can do it why not me.
Again, it has taken a long time, I got lots of help, and I still have bad days. Just want to say the potential exists to if not feel fully physically better, to feel mentally more upbeat.
Wishing you strength and peace.
karlee, I have just now read your post but have not read the answers so bear with my reply as you may not agree with me at all.
Yes, it is miserable being sick and yes, I had times when I felt like I was marching in place and accomplishing nothing of any consequence. However, the dayss go on and when something doesn't change on its own, sometimes it is time to shake up things a little and see if some change can be made by someone else.
As a retired nurse I ran through your listing of medications and I am wondering if you would not profit from having someone re-evalute your meds. You are on some antidepressants, but you are also on some meds that can really make you depressed and add fuel to the fire. There may be better medications available that will work better without the same side effects. If you want more of my thoughts just PM me.
Just hang in there and know that sometimes we have to go through the really bad times to appreciate when we improve even a little. Sounds like an old saying, but it is so true. Hanging around exhausted and hurting really does get old and having to deal with the weakness and pain even while grocery shopping is beyond miserable. I alays figure if I can still stand and walk I will buy groceries, but when I get home I have to rest for the next 2 days due to the pain and exhaustion. Price we pay for trying to keep our independence. Keep on keeping on and things can and will surprise you. Sometimes we have to put ourselves out on a limb to make things happen. Irish