Hi Alex. I don't have cancer or anything else so bad, so I don't often feel justified in complaining or feeling as if I have it tough. I'm very much a stiff upper lip, suck it up kind of person, and don't want others to know when things are bad with me. And that's just physically--much less mentally or emotionally. Yet sometimes I have to drop the guard and acknowledge it when I'm having a rough time.
2914 has been horrific for me from a physical health standpoint. Not just MS, but several other issues that make my life kinda difficult, to say the least. Various other things have happened in my personal life that have been hard to bear, and I'm getting old and less able to bear them, it seems. I've never thought of myself as depressed, and really I still don't, yet I don't quite understand where situational stuff stops and real depression begins, or whether there's actually a difference.
This is all to say that though I don't and can't truly understand your life struggles, in the past and now, not having had the same experiences (but some quite similar), I can still reach out my hand in friendship. As always, I do care. Please continue to reach out here whenever you feel the need to, knowing that others are here for you. If it helps even a bit to share, that's a good thing.
Thanks Alex for sharing this with us; I too think many of us are in the Denial stage for depression. We go thru so much that no one can see and if we mention all of our problems, we do get uncomprehending looks; I have friends who think my Tysabri infusion should just bring me back to normal, just like them. There is the "but didn't you just have an infusion", and it takes all the patience I have to smile.
I think I need to bring this up with my neuro next month, my list is getting longer for him…..sigh…..
I'm still in limbo and not certain yet what new hand I've been dealt, but would really like a reshuffle! My Mom has made mention that I seem depressed, and I think, how the heck CAN'T I be? All this uncertainty and symptoms and watching others do so easily what I took for granted as being able to do myself just a few short months ago...heck ya, I'm depressed, bummed out, angry and struggling...but I'm slowly learning, that , although I'm not to the point I feel I need medication..the person I really need to "stop from punching" is myself!! Trying to grant myself a little grace as I go about my day in a new and different manner...and allow myself to feel the most logical feelings I now have because of this curve ball! Hugs to you!
I know depression and anxiety very well, but for me it's only ever been second hand, someone who's forever lived through the chaos and gluing the pieces back together.....
I don't really know why I'm more like dad than my bipolar mum, sure genetics plays it's part but i'm a big big believer in nurture, maybe there's just truth in children either being the same or the total opposite. What ever it is that stops me from falling into chaos, may never be known but i like to believe the consistent state of my mental health, has something to do with me always focusing on the positives in my life, no matter what!
I maybe just kidding my self, that my choices are protective of my mental health, I chose to take a brake to save my sanity but it's stretched out to 4 years now and i'm still okay with not being officially diagnosed. To be honest I think it's easier for me to cope with everything, if I can keep telling my self i'm fine and can get through this. lol By no stretch of the imagination am I ever going to fit the definition of 'fine', logically i know that but it helps me regardless and officialdom will take away my crutch and i'm still not ready!
I have always felt that people who live with disability no matter what it is, are stronger than able bodied people will ever realise, it takes true strength to keep getting back up.....
PS keep looking after your self, find your sunshine!
I can hear the pain and frustration in your post. I just want to say that I'm sorry that you have to endure so much. I agree that depression and anxiety definitely can sneak up on you.
We found out when our oldest was 5 that he had a tethered spinal cord and spina bifida and with in a few weeks he underwent spinal surgery. After surgery had neurogenic bladder and had to start self cathing. A year later another spinal surgery then ended up with spinal meningitis. Another year a foot surgery followed by 3 more foot surgeries from the nerve damage causing him to develop foot deformities. Then within a few years of all of this our youngest started having issues and we found out he has Chiari malformation. I look back and wonder how we got through all of this but we did.
Then my MS diagnosis and this was the last straw. I was in such a hole and I couldn't breathe. I constantly felt like I had a brick on my chest. This is when I became very open to medication for depression and anxiety. I have to say it's helped so much. Is life easy, no, but I feel more equipped to handle things without caving. I still have very sad days but I feel I can bounce out now.
You have every right to feel like you want to punch something. Allow yourself that cause your human and your life isn't easy. You are one tough lady Alex and I get a lot of strength from reading your posts.
I'm sending you many HUGS and will keep you in my thoughts and prayers.
My very best regards, barb
Thanks for all your posts I really respect all of you for what you have been through.
Im new to this posting. I have had so many similar instances as you as well s a few more. I have fought anxiety and depression since my last child was born 13 years ago. First it was a stressful job, then the pressures of having a young family with a sick child. I have taken antidepressants for all this time. Many different ones and not one seemed to really work any better than the others. I do believe that depression can be affected by life events as well as circumstances and I have been in denial because of my mother's past medical history, I was ashamed to admit that I to may have a mental issue. I was diagnosed with MS last month but the 12 months leading up to it have been bad. The neuro I was referred to drug his feet and put me through test not even related to MS, I asked for a second opinion and upon on view of and MRI from the Second doctor I was told on the spot I had MS. Then several more lesions were found on my spine. I had spinal fusion surgery in May prior to the MS diagnosis. Life has been hard with financial burdens from not being able to work and mental burdens from feeling bad all the time. I have had several exacerabations from the MS and taken corticostroids for the last week, I am drained, moody and don't want to be around anyone. I am waiting for the red tape of the insurance company to get the Tysabri approved to get started. But will it be a magic drug that will change me???? My family is suffering as much as I am and I feel trapped. My neuro thinks I may have an underlying case of bi-polar disorder in addition to all the other mess I have had laid on my in the last several months. What do I do? How do I feel? I don't know if you have but I have applied for SSA disability this is a long drawn out process if the folks that make the decisions regarding situations like ours lived in our shoes just one day they would understand that this is a hard life to live and giving us our money that we have paid in would make our lives a little easier knowing we could put groceries in the cabinets for our families to eat and pay the bills to put a roof over their heads. I feel for you and your situation, Alex you are a very brave and realistic person. Don't give up and know that you are never alone. You will be in my prayers. Momto3andNanato2
Thank You Alex for sharing! I am not typically the type that lets anyone see my worries, my weakness and for gods sake someone realize I am depressed. As like the other person stated 2014 has totally sucked for me. And hearing everyone elses trials and hurdles I feel I am not really in this all by myself. Thank You all. I am new here and still waiting to be given a dx. I look back and think about all the signs I was given and just ignored. Hind sight stinks and "what if's" are worse. This year I totalled my suv, (last snow of the season). I already had a metal plate in my neck since 2000. I guess a bone spur broke off in the accident and I am also dealing with a neck that needs to be operated on, I cant have surgery til after Jan. long story short husband was suppose to get insurance thru new company (he is a owner operator truck driver). After Obamacare was closed the end of march we also found out that the company only gives company drivers insurance to buy. So yep I have no insurance. I lost my $20/hr job because I can not work due to the condition of my neck. Then symptoms become worse and worse and I am now facing the reality that I may have to add MS to all of this. I am medically in the poor house. My car insurance even tho full coverage only paid $4,500 on medical. I had over 20k due to the accident. Now I am paying out of pocket for the MRI's and Neurologist, blood work and Lumbar puncture. I everyday feel so guilty that not only am I not working I am continuing to make the bills worse (medical). I have worked all my life. I raised 2 children to the ages they are now 20 and 19 by myself (except for the last 7 yrs i have been married to my husband now). No child support etc. The kids havent seen their father since before 2000. My oldest is now in the Air Force and the youngest is still living at home (thank god) and going to college and working part-time. I fall way too often I am embarrassed to go outside for fear the neighbors will see me walking and wonder if I am drunk. Everyone here knows the battles that go on between oneself and their body. I not only am being treated for depression but now I have panic attacks and anxiety levels over the roof. 2006 my eye dr was concerned about something going on with my eyes at the time and said he would make note of it and always check. 2009 I was rear ended on my way to work at the same intersection that my dad was killed at in 2003. I was so upset and rattled. The suv itself was not hurt at all. So I didnt make a police report. Later of course I started having issues with tripping and numbness and falling. I went to alternative health dr (chiropractor that uses and tool and doesnt push on bones) to see if maybe getting an adjustment would help. At that time she told me I had all the symptoms of MS. I blew her off and told her that it was because of the plate in my neck. There are so many more signs I ignored and now the what ifs can drive me crazy. I didnt go back to the eye dr because at that point I was so busy with my job (i worked with 12 clients who had mental illness I was their case worker and would go into their homes making sure meds were taken they were doing what they were suppose to etc. there would be illegal things I would find out and have to make them exit the housing program they were in) and I had the 2 kids who although a yr apart were in the same grade. so double everything drivers school, class rings etc.. I didnt have the time nor the extra $ to spend on myself for going to the eye dr. So now here I sit and I am spending way to much time on self pity and here are all of you who are going thru far more than myself. I thank you all for helping me deal with this hand life has dealt me by telling your life stories. I pray for each and everyone of you that life brings you people like yourselves to help me as you have me and that the pain, depression the illnesses and worries are somehow made alittle less to help you cope with what you are going thru. For the bad luck that I have I have hit the jackpot when I stumbled onto this site.
They thought I was bipolar two but I have more lows. The antidepressants do not work on me they have to be creative they are using Lamictal which is for seizure disorder. My pain doctor says because of the MS my brain does not turn off it races day and night. I got completely rejected for disability. I waited too long to apply. I was very depressed and had to go to a counselor after being diagnosed with MS.
Have you applied foe ssd I waited to long and can't get it. I feel badly that my husband is working and I am not and I have such big bills. I have learned to let it go. It is hard not to worry about money. The no insurance is really bad I am sorry. I had a terrible time going through diagnosis for MS which took years. I also have anxiety. I feel for you. We are harder on ourselves than others would be.
My Cancer has now come back enough I will be kicked out of my clinical trial. They have to put me on something stronger like the ones I was on early on when I lost my hair and did not eat. I really do not want to go on these medications. I talked to my husband and said I want a break which I can't do really. He said I have to keep fighting for him. I know I do but I feel no one cares what I think. I have had most my organs removed. I have had 22 rounds of chemo. A scan every other month and you pay for all this stuff when you are in Cancer Trial. Each scan is over $1.000. I sometimes feel like a cancer rat.
I am so sorry that the cancer has come back enough to stop your clinical trial. My husband is pretty much the same way I am always saying I am sorry for all these medical bills and not bringing in any income and he tells me to stop worrying it will be fine. I feel bad because here I am and only dealing with this and my broken neck when there are those as yourself who are dealing with way more. My anxiety levels are off the charts and I know that is not helping with the symptoms I am having and only causes the headaches to be worse. I guess being stuck at home ( I really dont like going out in public with the way I walk. Pride is an awful thing). Can you get state assistance where you live? I know the way the economy is most of the states are or have made cutbacks. I wish there was something I could do to help. Yes I am applying for SS. Did you have attorneys helping you apply? Have you tried again after the waiting period to apply for SS? I get so mad at SS in general. In my employment I helped my clients apply and sometimes I swear I wanted to scream they really needed to be on SS and yet I see alot of people in this area who are just plain lazy and get it right away. frustrating when I know people are out there like us and are denied. If it wasnt for having my daughter still live here and my cats (lol oh lord I am probably turning into one of those old cat ladys now too ;) )I think I would go totally nuts. My husband is over the road truck driver and my son is in the Air Force. I have a sister I am close with and bless her heart she is so patient with me and my worry and wonder what is going on and what the LP results will say etc.. She is 6 yrs older than myself and has severe RA. If you need to just vent I am here. This group is the best thing I could have ever stumbled onto.Theresa
I waited to long and can't get SSD, I can't get state assistance, we make to much, right at the cut off for hospital assistance as well. My case does not make your problems any less. I would not be embarrased at going out. I have to go out when I lose my hair. Most people are into themselves. Cats are great I have two Moon Pie and Ne Hi and three dogs. One dog is a pup she is crazy.
Mostly I worry about family or friends that I am out with and having it embarrass them. They all are really great about it and say its not. I am afraid that is what I will find out also make too much $ and will be at the cut off also. No one cares that we all still have bills and some of us 1 less income and add alot of medical bills to that. ugh. frustrating to say the least. lol pups can be hilarious and yes crazy. But it keeps ya smiling.
Animals are the best. I get so much love from my cats and dogs. They know me better than my humans. You hang in there Alex. You are a good one. So sorry for all you are going through.
Can those of you with long posts, break them up into paragraphs?
Some of us have difficulty holding thoughts that long.
good share Alex, if i can call it that for lack of finding a more appropiate adjective.
i often think those of us with brain lesions and inflammed CSF, whether one calls it MS or whatever these days, that we would be prone to depression and/or mood disorders(another med term de jour).
from my perspective, with just your ms & cancer and all that goes with that for you, you would be depressed at times. you know?
taking up guitar and music has helped me. like many folks in our type situations some creative outlet brings a sense of joy and accomplishment and wonder. and we can do it alone in home which helps for some of us that don't get out and about much.
a/d meds? yep tried many of them. not a big fan of them due to for me, i've never felt really good on them or "normal". i feel more "normal" when i don't have general discomfort and pain. so for me, pain and bad moods go hand in hand. contrary to what some shrinks like to project, my bad moods certainly come second to the pain and discomfort. frankly, for me, some pain meds actually seem to help with "my depression".
when we ms'rs and/of cancer patients get so burned out from fatigue, pain, sleep disorders, social dysfunctions, family dysfunctions, mis-fired brain impulses, etc, is it any wonder there is to be some type of "depression"?
and toss in the doctor/diagnosis journey for some and that just pours fuel on an already blazing fire within.
hope you find success with your doc's treatment plan for your depression. quite a few off label meds out there that work for some and for others not.
i've read many a posts by you and your sharing of what works for you and what doesn't helps many here i suspect.
i think helping others helps the person giving help too in, often times, unforeseen ways. not something that can be bottled and dispensed but definately something that helps the human spirit whether in good times or tribulations.
don't like seeing you or anyone go through such trials but i'm happy you find time to help others. makes the world a little better place.