I was dianosed in 1992, had several attacks, but it went away in 1997 and stayed away for almost 20 years. This last summer my left hand went numb. My doctor sent me to get 3 days/ steroids. But it got worse, on the 4th day, I could not think straight at all and it was so bad and awful. The nurse, people were all telling me it was steriid side effects. But the truth was and I did not know I was have a MS attack. 3mths later I started struggling with cognition again, got an MRI and I was having an attack. I have lesions all over my head. Needless to say, I have been so sad, angry and scared. I am not intereszted in most things and dont want to do anything. My dog gets walked and seems like its the only thing I care about and of course my family. People who dont have MS dont get it and think I should just change my thinking and be positive. But right now I cant accept this...and I know Ill have to eventually,....BkBoo
Bkboo, GRAB a hold of what brings you joy....depression, anger and sadness still rolls around for me. I resent this disease so much and the money I have to spend on it. I dont know if I can ever accept MS...My goal right now is just take it day by day and to find joy in part of my life. I think that is how we will endure is to find JOY. SO I say grab a hold of what brings you joy and love!
Know you are never alone in this fight!
How aggravating it must be to think you are free of MS or even better, WELL. Then 20 years later it raises it's ugly head??? That would really tick me off too. Think of your blessings, namely the one you menitoned, being free of it for so long! Good for you!!! Try to laugh at your cognitive issues while staying safe if you need to hold off driving or "operating heavy machinery" and such...Thinking of you and wishing you health and peace of mind.
Hi, I was just diagnosed 2 months ago via seizure. I really did not have any warning. I can only think back to feeling more fatigued and having a tremor in left hand. But I am a left handed artist and do murals for a living so I thought that was normal. I can tell you that I was found to have lesions also. After the seizure I seem to have short term memory issues as well as some trouble cognition as you say. I am slowly working myself back.
I feel like I am a different person after this seizure because I was completely out. I do not remember anything until after 2 days in the hospital I started coming back.
it was so weird. So now we work on the "management" of these lesions I never knew I had. It is an adjustment. I have started the shots of Avonex because i do want to control it. I think I can deal with this. I know we are all different,but talking to others does help. I am here to talk if you need it.
I was first diagnosed with MS in1993.
My symptoms seem minor because I don't have much pain.
I get very emotional and cry "for no reason" and my dogs cheer me up!
I dog-sit for my husband's coworkers because I don't trust myself with human babies; because I shake!
I need to make friends.
Your story, feelings, and confusions are common to those of us with MS. Sometimes I go onto the research sites, but then have to shut down all that information. There is news out there of trying this, that, and every other thing, but it comes down to what works for you.
I agree that family still doesn't get it to the degree that we'd like, even a supportive spouse. Sometimes I'm being serious about what's happening/not happening, and he tries to joke me through it. Sometimes I really don't appreciate his joking, but I know he's trying.
I've nearly given up on pursuing support from people, deciding they are giving what they can give and I have to accept that. If they're leaning to the toxic side, I eliminate them from my life or at least decrease contact with them. This MS is scary as we don't know what to expect down the line.
At times denial is a safe place, as I assume I'll be forever able to travel, garden, drive myself, cook, balance the checkbook, etc. That's easier on my outlook than figuring the scary what if's can come my way.
Be easy on yourself, taking care the best way you can. Get the right medical care, keep looking for the doctor who makes you feel as safe as possible. Keep pushing to be the best you can be, and forgive yourself if you have to take a time out to refocus. Cheers.
Just when I think some family members are "getting it", they react in ways that I understand they don't have a clue, and maybe worse yet don't choose to understand MS features.
I sent a copy of latest Motivator (MSAA publication) to my one sister, who has had difficulty figuring out my disease.
Her response, "How do you get out of bed every day?" When she reads official information for MS, statements of what can be symptoms for different people, but a clear communication that not every one has every symptom, and still she doesn't "get it"?
I will communicate with her but put her in the category of one who won't get it, and I have to accept her level of "not getting MS."Being a sister, I can't delete her from my life, but....
Thank God for close friends who are trying to "get it", accepting me as Bobo, good days and not good days. Cheers.
Man you are so right, I wish friends and family can understand this #### !!! I feel like im loosing all of them. They think everything is ok cause i dont look sick, but the mental issues are just the worst. Depressio, ptsd, anger, lonelyness. If they had to go through one of the bad days man things would change
man can i relate...and wish none of us can relate.
i can see why its a "lonely" disease for some of us. have one decent day and your neighbor(s) and/or friends think nothing is wrong ...then we have those days/weeks/months of mind/body just feeling totally seperate, off balcance, weak, sexual/intimatcy issues, lack of sleep, etc., then we get the cog-drain, depression, irritabliity. etc ...
no wonder i guess i don't hang out much or find others that want to hang with me as their feel-good schedule days and mine are like never on the same day.
and now i can't express verbally easily. others can't really feel that but in my head and voice-box its a real effort to express verbally and others don't slow down to my speed so its hard to keep up with their fast talking.
any wonder why some of us stay in even in cooler months? been speaking with my counselor about "rent-a-date" just for some female compansionship. not so much sexual as all the stars have to be lined up just right along with my mind/body aligned just right and all that is a dice roll. but just to hang with a movie or something.
yeah, i to resent MS and the VA for taking 23 years to come clean and diagnosis all those years of symptoms. could be worse! ;-)
johnnyrocker wrote: Man you are so right, I wish friends and family can understand this #### !!! I feel like im loosing all of them. They think everything is ok cause i dont look sick, but the mental issues are just the worst. Depressio, ptsd, anger, lonelyness. If they had to go through one of the bad days man things would change
i know how you feel it feels like evething is takin from me.i had to give up my dog.ki am vey sharp tempered.i dont hear things right i repeat things constantly do some walkin i now have a cat and the greatest caregiveralot of people avoid me i dont talk right.people think i said something else and they get mad.i have a jazzy cause i cant walk far.i cant do the things i want to do.i forget things notes all over the apt.you just have to do things you can do i can relate to what your sayin.I had a pain pump put in jan uary of last year there still trying to get it right my bones are very bad cant sleep is a big issue i just take it day by day i do art work play games i am very tired all the time sittin around is not the answer.i get mixed up sometimes when people are talkin i think they say something else than i get in troublei go to bingo when i could.just try you best if you cant do it the next day i cant wait til the weather breaks.chachi22
First, I want to say, "It is okay to feel all of those things." Most people who get any life altering disease goes through those same feelings. Some people have them momentarily and others stay in one feeling longer than another a little longer. As long as you don't stay too long or else it becomes depression. When you get diagnosed with a life altering disease, most people go through the five stages of grieving because in away you lose a part or who you were or what you thought that made up who you were. Nevertheless, remember the disease doesn't make 'YOU' . You might have to make different changes in your life and who knows you might be a better 'You' for it.
Second, Don't give up on the things you like to do, for instance: walking your dog, or a hobby you enjoyed. When you stop doing things and stop moving your muscles get worse and for me my disease gets worse. The attacks come more and are more intense.
When you are ready, think of the positive or try to find a new positive. Don't forget it is okay to be mad but remember you might pickup a new passion you would never have found if it wasn't for the disease taking a dramatic change. There are a lot of cool people on here who can help or just listen if you ever need to yell or be angry. I am here if you ever want to chat/email. I have been through all those feelings and even now and than revisit some of them when my disease adds a new symptom. I got really angry and even went into denial when I started to not be able to walk on my own. The idea of being so young and having to use a cane and some times a walker was embarrassing . Because of my stubbornness and anger, my husband and I would fight all the time.
Sorry off track. Good luck and hope you find your way to the positive.
Hi, Having MS is not fun. I was very fortunate to have had many years between exacerbations...but then one day, it became necessary fore to accept that I do indeed have a disease process that needs to be owned. This owness for me, meant accepting the fact that I needed to participate in a shot regimine. The first five years I took Avonex-I worked all week and took my shot Friday evenings, so that I would be ready for work on Monday. While my weekends became a little low key, I still managed to rest and ride my motorcycle. The next five years I decided I would take Copaxone as I really didn't want to have weekend blues. So the shots daily became my reality. There was nothing to them. Now mind you I did not have any exacerbations, nor increased number of placques in my brain, afterall, I have 17 deadspots-who needs more-right? Anyway, This last five years I have been doing the Interferon every otherday. No side effects other than the red splotch which goes away. Each of us responds to different things as our bodies are unique. I truly believe one should bite the bullet and take advantage of the resources available to us. As it makes the journey a little more doable.
I am new to this site and new to the world of MS I was diagnosed on feb 27th of this year and its all so new and scary for me. I am 29 married and I have a 22 month old son Cayleb. I find myself constantly thinking and wondering what my future holds for me and my family and what scares me the most is that its all so unknown I cant even tell how I will be in the next year or two. thankfully my MS was caught early and by accident that's my blessing. I still wonder what could I have done in my life to prevent this. -Life is pretty tough for me physically on top of the MS I have degenerative disk disease and osto-arthritis in my lumbar spine so no matter what I do I am in pain some days are better than others. My husband has made hurtful comments saying he thinks I am lazy but I remind him of my struggles. I don't think he means to be hurtful I know he is scared for me too. I need to start finding was to cope and people who understand what I am going through to talk to. I am so glad I found this site and I hope I can makes some friends who understand what I am and will be going through for the rest of my life.
I used to be so involved in activities.I have always loved Martial arts and dance is a passion of mine. I have taught both dance and karate for over 10 years.I even taught aerobic, was in good shape and strong as an OX!!! Now, I only teach one karate private. Dont workout, I have gained weight. I dont want to workout anymore which is something I used to enjoy. Ive moved closer to family and in a small town, Im from Los Angeles and whew what a change that is and struggle to find interests..I just dont know what it is and why I cant grab a hold of something I enjoy...well wait, I do enjoy and my dog, which is right now the only thing....hmm...
I know your pain. I used to competively compete in martial arts, as you know, is the most rewarding accomplishment. I slalom water ski and snow board; I used to run 6 miles a day and was a personal trainer, so I was always in great shape. I ate all the right things, did the right things. Then I wrecked on my snowboard, hitting my head. After doctor after doctor and a MRI later, I was told I have MS. That was 5 years ago. Last year I barely was able to get off my couch; the depression, vision problems, vertigo, balance but most of all the cognitive issues consumed me. This year I've started running with my dog, he keeps in line helping me to balance. When I dont do that, I walk with my mom 3 miles; I even asked my elderly neighbor if I could walk her dog for her, not only to help her but to make me accountable. I try to do this 6 days a week, my body is feeling better. Not better than ever, but better than last year! Now, I just need to figure out how to pull my brain together. I would love to constructively get a sentence out correctly or go shopping by myself...stores make me crazy with all the noise, lights and activity. As much as it makes me sad that people are experiencing the same issues; I feel relieved that Im not crazy! There are others who "get" what I've been talking about...you're definately not alone, so love yourself first!!
Elizabeth, I definitely struggle with severe depression....and yes its life altering and I think I am having like you said the normal feelings about it, its been a monthish that things got bad...how long does it normally take to get through the grieving process....i know it varies but in average? And I hope i find something else to love and get involved with because my slate is blank! Ialso, I would never give up on my dog, he needs me :) I would never! I wish I could take care of me like I do him ..I do need to workout, I have gotten so weak, so weak...I am not ready to accept this, I hope I will soon. I understand, using a walker or a cane being so young is a challenge for sure. Its just a messed up disease, ya know. bkboo
JRocker, I have foundthat they try but dont really understand, family that is. How could they. I am having a hard time understanding myself! And my so called "friends" have just disappeared and it hurts my feelings and made me feel alone, etc.... unfortunatelty, in hard times you do find out who your friends are, I have met new people who are supportive. And I look just find too and this time I took have issue with cognitive stuff. It sucks! My brain works so darn slow! I was in the market yesterday picking up a few items got in the car and looked at the time, 45min. it took me. It took 10 minutes before! I get angry, depressed...whew really down, etc....so I have to be there for me 100%...sometimes its hard reaching out to Supportive people cause I was so independent, buut I have to take care of me...or try to remember to.. bkboo
Hi johnny I,m bobby and I have to agree you hit it on the head its like it seems no one gets it one day in our minds and body,s they will I,m new here but Iv,e been sick with problems my whole life since I was 3 when they started operating on my right hip for leg calve pearthes
my life has been up and down like a roller coaster the depression mood swings panic attacks
Bkboo, I dont think grieving process is so different for each of us. If it consumes you I suggest getting help...I've have had help with like issues and I know if it gets the better of me again I'll ask for help...I LOVE my cats and dog...even though I am happy married there is nothing like one's fur baby...There might not be a lot of joy at time but they are the ones to bring a smile to my face...As for as excising it is a decision that I havent really buckled down to do...I know I need to or should do...but again I am not strong in that department...I pray that you find peace and comfort hugs
thank you :) Bkboo