New here and struggling majorly

[Just_Jessy]

Depression, Pain and exhaustion... oh my. Sorry my attempt at some dark humor since that's all I seem to have left of me in me lately. How do you accept the constant decline in health and hopelessness? Serious question! I'm really struggling.

[Cwright170994]

I don't know if I've fully accepted my MS, but I do like to make fun of it. For example, if someone who knows I have MS were to ask why I forgot something, I do a quick hand signal around my head with a, "what do you think?" expression on my face. I wear MS awareness t-shirts that I find funny too. For example, I've got one that says, "the only good thing about MS is that zombies don't want my brain," and one that says, "death smiles upon us all. MS warriors smile back."

[Greentime]

Welcome Just_Jessy. If you "hang around" with the people on this site, it can help in many ways. It sounds like a viscious cycle to me because pain increases exhaustion and both can lead to depression. And depression just makes pain and exhaustion worse. I imagine you have been trying ways to alleviate the pain and to get some decent rest. Have you tried anything to deal with depression? Be it therapy or drugs? IMHO if you can deal with the depression, the pain and exhaustion will become more manageable. Hopelessness is SO much worse when depressed. I sure wish you good luck with all this.

[Neworleanslady]

prayer, exercise

[JTZES]

I went through that for 7 years I just couldn't accept my new life. I was referred to a MS psychologist. She didn't put me on drugs but gave me how to accept everything day to day. I try to set a goal for myself every day. If I get it completed then I accomplished something. If I don't complete it who cares. I treat the not feeling well days the same way there is always tomorrow.

[AquaZumbaFan]

Just_Jessy,

Welcome to the group! I think any be, light, and anything in between is good. I’ve had this disease for quite a while and have come to terms with it definitely harder than others. Sometimes weeks or months can be harder than others. Hopefully you are treating the depression. I know I am and have been since 2015. It’s a constant battle with the decline. My husband pointed out to me years ago that I have to work harder than the average person to pretty much do anything.. I had to work doubly hard to understand the same information that was given to everybody else like when I was learning new procedures, equipment… Really anything I didn’t quite recognize the cognitive issues that I was having until later in my career.. luckily since 2021 I was able to retire. I am fighting the fight with everything that I have.. don’t give up and come back soon to site.. There are a lot of really good here… Just to talk to people who get it can really help.!🤗

[GreatDanekids]

Welcome to our group and I hope you can find something helpful amongst our replies. Have you talked with your neurologist about your symptoms? There are quite a few medications that can help treat the pain, I’ve been helped a lot with Gabapentin and amantadine. I am also taking Ritalin for the fatigue and a couple of antidepressants. It’s been a process for my doctor and myself to get the right combination of medications and over the years it continues to change.

I have had some rough patches and been fortunate to have a spouse that steps in to pick me up, sometimes literally! 🤗 I agree that humor can help but when you’re fatigued or depressed it’s hard to find the humor in life. I will pray for you, if you don’t mind, and you are in the right place. We have been, are currently or will be, in your place.

[LovetoSalsa]

I’m sorry to hear that and me loneliness….

[NorasMom]

I can't really relate, because my diagnosis was a relief after too many decades of being ignored by doctors. I learned how to adapt because I didn't really have another choice. That said, I did go through a spell of using antidepressants. I think JTZES covered it well. Take pride in what you're able to do. If that's just getting out of bed and walking to the coffee pot, then pat yourself on the back for accomplishing that much.

I think we tend to be harder on ourselves than other people. We see what we used to do and now can't, but you have to change the way you think. Nothing you did caused this, and nothing could have prevented it. In no way are you responsible for what's happened to your health. Find some hobbies that make you happy. Focus on what you can do rather than what's out of reach now.

Work with your doctors to find something to help with the pain and depression, because until you can ease those things the rest of your life is going to seem unsurmountable. Meanwhile, keep posting on here. We're great listeners!

[Wheelof]

I have poms I'm in constant pain. But my life is far from over. I have a mantra, put one foot in front of the other. My body constantly tells me you can't do that. My body lies it just doesn't want to do anything. I guess I'm to stubborn or stupid to listen. Instead of declining I'm getting stronger. I have no idea how long i can keep it up but sofar a year and a half of getting stronger. Don't believe your lying body just keep putting one foot in front of the other.

[Just_Jessy]

Thank you so much for the replies. It's so hard because I use to have such a busy life. I was previously a state prison officer in a level 4 all men's prison, use to be so excited about my future and planned to become a lawyer with a ton of knowledge in the law, court and how everything works. I also dreamed of becoming an author. I have 4 children and 3 step children between ages 6-19. I use to be so active, fun and witty. I feel as if all of my hopes and dreams are gone now. The depression really set in when I was approved for disability. I'm still alive, but I'm grieving the dreams and life I wanted and worked so hard on having. I also suffer severe PTSD from my childhood and long term previous relationship. I feel as if my life just got started with my husband, and bam it gets taken from me like a rug being pulled out from beneath my feet. I try so hard to hold on but the ride of life is often spinning too fast. Thank you for listening and being there for me.

[robster1]

Hi Just_Jessy!

Ya know, you’re doing the best thing right now…your sharing your issues. It consists of the good, the bad and the ugly with this wonderful group. The exercise is another key component. For me I realize it takes more…diet and a spiritual program. All of these are pathways to betterment. However. It’s never easy . Think about your attitude and outlook. I know I’m all over the place and I hope you get something from all I’ve written.

God bless,

Robbie

[MSFlea]

Welcome Just_Jessy I've been diagnosed 1 year and 2 months now. The first year was absolutely the most difficult (so far!). I just started seeing an actual MS neurologist last November, and she referred me to pain management, and several other places. Instead of slowly getting worse, and feeling awful, I actually feel a tiny bit better. I fired my therapist and found a new one that I felt had a better vibe and understood what it is like to have MS more. Took going to a few to find the right one. She is awesome and only sees clients via Zoom, so I don't have to worry about going anywhere, which is awesome. No driving needed.

You found an amazing group of people here. I'm not on as much as I would like to be, I have teens and they keep me busy, but this group is the most positive one I found in my searches when I was first diagnosed, and is now the only one I hang out in. Very positive and uplifting.

One thing I have found that has helped me with my depression is finding things to make me smile daily, looking for 'glimmers' each day. A pair of earrings. A fun calendar (I have The Latest Kate's tear away calendar, it's very uplifting). Can be anything. Just something that daily makes me smile. That, and talking to my psychiatrist about antidepressants. And finding the new therapist. I'm still working on it. It's especially difficult on hard days. But I try to remember that hard days are just one day. Maybe the next day will be better.

Mind if I ask how long you have had MS?

Glad you found this forum! Hope you stick around! 🧡🧡

[Just_Jessy in reply to MSFlea]

I've very likely had it for years but just recently had a doctor in the ER say "hmmm this sounds like MS to me" and my PCP agreed. I've dealt with debilitating head pain and brain fog with random bouts of numbness and pains in my body with shaking and vision loss for years that have gotten alot worse over time. I fired my crappy neurologist and am awaiting my appointment with a new one as well as pain management. This diagnosis is very fresh for me and the symptoms are progressing very quickly.

[GreatDanekids in reply to Just_Jessy]

Your situation sounds very similar to mine, I also probably had for years before diagnosis and my first year was the worst I’ve had since. It takes time to get your head wrapped around the changes and allow yourself time to grieve. It will improve once you get your meds dialed in. I changed neurologist’s three times until I finally found the one that would listen and help me with the symptoms.

Check out Dr. Aaron Boster on YouTube, he’s a bit corny but extremely knowledgeable and helps you find your way through the process. You didn’t mention if you’re on a disease modifying drug, if not, talk with your doctor about it. That can make a huge difference on the progression. Sending prayers and hugs. 🙏🤗

[Just_Jessy in reply to GreatDanekids]

I actually reached out to the Boster center but they wouldn't take my insurance. It was worth it for me to travel that far to have a good doctor even if I had to drive 12+ hours. A good doctor is worth a lot when you're dealing with something so debilitating. I am not on a disease modifying drug. I'll have to check on that when I finally get into my new neurologist office. It's a nearly 4 month wait and I'm currently just on indomethacin which is taking its toll on my body 150mg a day and muscle relaxers as well as a high dose of Prilosec to counter act the horrid side effects of stomach ulcers, and Remeron to help with my non existent sleep and anxiety. This journey has been a roller coaster that I didn't sign up for and I want off lol. Hopefully things will eventually get better.

[StacyHayward]

for me, I get outside and get some sunshine, and I put a lot of energy into serving others. It helps me focus less on myself and my problems.

[Essaad]

Hi there. I know that Ms is a chronic disease, but never lost hope of having a happy life by learning and enjoying all good things I have in my hands.

[SaltyGirl]

Dear Just_Jessy, I’m so sorry about the Depression, as it has been a significant part of my MS journey. Been on antidepressants for 30 years and was diagnosed with MS 25 years ago. The struggle is Real, no doubt. Personally, I’m at an ok antidepressant place, but there have been a lot of misfires. I wish you the best, exercise helps and I think I have to start mental health therapy again. One day at a time, but don’t be afraid to ask for help, because there a lot of folks out there that will lend you an ear, or a script, or a coping hint. Prayers with you, to the max! ♥️🕊️

[Gstrait]

Welcome to this wonderful group of people from all over the world. I agree with everyone's responses, exercising, eating more healthy has helped me, talking with good friends, and etc. 🤗🙏

[carolek572 CommunityAmbassador]

Welcome to this forum, Just_Jessy There is a lot of information that some members have shared with you. May I add that you can visit mymsaa.org for more information that might help. We are our best advocates. Find a medical team that you feel comfortable with because your care should be a partnership with them. I look forward to hearing more from you. Be gentle with yourself 🤗

[KGrayiskindaok]

Hi Just_Jessy! The good news is you have a diagnosis, disability approval, and family to love. After finding a good doctor, I find counting my blessings very helpful. Even when I have so much pain all I can do is just be still and cry, I still try to remember that I am lucky to be alive and (with me) I know this pain will improve. MS symptoms vary greatly from person to person. Mine ebbs and flows. I was diagnosed 15 years ago and get terrible leg and back pain. What helps me is a combination of Tizanadine, Baclofen, Tramadol, and distraction. Hobbies are great. I have discovered some new ones since my diagnosis. I also find that on my worst days doing something positive with each of my senses is helpful and distracting. See something beautiful, smell something amazing (I like to smell mint, cilantro, oranges, peppers). Listen to some beautiful music or some funny comedy, touch something soft and cuddly, or take a comfy bath. Drink some fun flavored tea. (Drinking more seems to help m symptoms.) Be kind to yourself and keep talking on this site with people who understand. I wish you the best. Even with MS you can still have a future that is amazing that you haven’t even thought of yet. Despite my pain, I am happier mentally now than I have been fo years. 😊🌷

[stepsforNeeC]

Hello Jessy. This journey can be challenging, but we have to find ways to re direct thoughts that are heavy laden. Your doctor should know about your pain and how to help you manage it, as well as how to boost your energy. Positive thoughts, “people, places and things “ can combat negative emotions. It’s not always easy, but for me, prayer, positive people, worship service, soothing music are my elixir for peace! Sending positive thoughts and prayers to you and hoping you can find your peace. Love and blessings. NeeC

[Helpmeup]

Hi Just_Jessy, and welcome to our group. You have gotten a lot of great feedback already, and I don't have much to add. Early on after my diagnosis, I went to a wonderful therapist who helped me get through all the emotions of fear, anger, depression, hopelessness, etc. and she told me I needed time to grieve for my losses. I know you don't feel like it now, but you will still have a future and a family who loves and supports you. You will get through this. As others have mentioned, the "one day at a time" philosophy really helps. Some days I can accomplish more than others.

This site is a great place to ask questions, vent, have a few laughs (keep your wonderful sense of humor-it is so important). Keep in touch, reach out, and we will be here. You are not alone in this fight. Take care. 😊

[Tazmanian]

welcome to the group

[1yoyo]

I am sorry to hear.

I take vitamins B12, B complex, and Magnesium Citrate.

Try to have a sense of humor😅🤪🙂. It's hard!!