I know it's been a long long time since I've written anything. I've retreated into the recesses of the shadows. I even actually keep my trailer dark as well. And I mean dark even in the middle of the day. Being single pane windows with bot much heat cold barrier I have insulated all but two windows and a small skylight above the shower to keep warm in winter and cool in the summer heat. So when I say dark it's dark. I've withdrawn especially with not getting out but a few times a month over the past few. No it's not my medications, it's not any new side effects or anything like that. Its simple actually... I'm sad, I'm lonely, I'm hurting... I never could have imagined a space such as this. I've been searching for answers and a way to climb out of this place. The fact is I am lost. I heard it explained best that a guys father was a doctor. As a doctor he put all of himself into being the best possible physician he could be. When it came to retire he couldn't he kept on for without being able to practice medicine he was lost, it was his identity and without it... well such is as in my case except I was a pilot, but I wasnt just a pilot, I was an Avaitor, for it was my identity, without it I'm struggling to be. Then there are all the other stuff.... as much as u try and say MS dosent control me or define me, the fact is MS is my captor, my sadistic torturer and it never allows me to rest. MS has broken me to a point where I wont ever return from. I was being so quiet on the forum because all the things that go through my head come out and I don't want to discourage anyone.
How do you know for certain you are:
1. depressed
When you wake in the morning, or afternoon, as soon as the cobwebs clear and reality sets in you begin crying and that's how your day starts.
2. Lonely
When the weather begins to warm you have spiders and ants and other crawling critters. You find yourself playing with the ants, naming the spiders. To top of all off you find that when you got up during the night to get a drink you acidently stepped on sammy the spider and killed your little friend. The grief lasts an entire week.
So there is just a brief small part of why I have been so quiet. I hope that one day soon I can get back together.
On a good note my medical mary Jane has helped with my pain so I'm getting a little relief there and yesterday I walked a mile in my own shoes. I've been walking and working at improvements. Cause not fighting just fuels the sadness and despair.
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Allen5280
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Ty for the update, I’ve been wondering about you, friend. And Rob too, maybe your post will snuff him out. Lots of love to you, and I am sorry that you are stuck in the darkness. I hope you will soon!
Well I suppose if I had the strength and energy to do something such as that, I probably would be. I haven't eaten a good solid meal in a week. I cant kee pl up with the basics in life right now. I've been down for awhile and I am buried under dishes and laundry etc... if I can hey to where I can shower and shave on a fairly regular basis I would maybe consider being able to do for others. But right now I cant even do for myself. I haven't driven in 3 months. Not because I am unable as much as I unable to fix my pickup. Disability level income at 40 isn't squat. I have to save for everything. I had the funds but then ive had several things break down on my trailer. AC Heating issues
.. cant let those go! Etc and its just life stuff. I really am not looking for suggestions, it was just brought to my attention that I was missed on the forum so I was just reaching out so other didnt think I dont care. I do, I'm just in a space where i dont have anything positive to add.
I have thought about you often. Maybe I should have written you.
I went through a year of bad depression many years ago and know how it effected me. You are the only one who can change it, unless you can find the right drug (or combination of drugs) to help.
Please do not give up, you are worth living for, it doesn’t have to be about anyone but you.
Thank you Lynn, this battle has been waging within got so long now. I've seen, psychiatrist, therapists, counselors and tried medications etc... I've been struggling with this all since the onset some of my first notable MS symptoms. Anxiety was the trigger that started my doctors into the 4 years of test surgery ng prodding waiting for drs availability to get to MS DX. The last therapy I was in the discussion was that after my second appointment w I s how I already had the necessary tools to use and it was to be a place where I could vent. I know what is "supposed" to help me out of this space. They are no longer effective. I think in broke beyond repair. I'm to that place where it's a daily battle between my inner demons trying to convince me it does not matter what I do for I am bound to continued failure. That the only reason I have not "fallen on my sword", is the belief that is unforgivable. If I loose that belief, I loose my faith, I loose this fight. It's become a battle in my head day after day. Then I was in the dispensary a few weeks ago and was wearing my MS warrior t shirt. A young woman waiting next to me noticed and started talking about MS. She said Her sister had MS but at 26 she took her own life. I almost started crying right then. I couldnt fund the words I should have tried consoli g her and maybe talked to her some more but all I could think about is oh how I wish I had the courage and I didnt want tk say stuff like that.
Oh I think she was just trying to convey how heartbreaking this affliction can be. She seemed to be in a great deal of distress and I should have been able to console a bit but I've just been in my own struggle that jas bound me up and I missed an opportunity to show compassion. After the fact I gave myself s good scolding. I wont forget her and I will be looking for the opportunity to do so. It's a big community and often times see many familiar faces frequenting the same places.
Allen5280 . I’m so sorry for your situation and problems but please don’t give up. When you think you are at the bottom there’s only one place to look and that’s up. Hold on to your faith in Jesus and he will take you through the darkest of places. I don’t mean to carry on but you’ve mentioned that you kind of enjoyed my rants and if there’s one thing I can rant about it’s life and faith that God will bring us through.
Father I asked you to touch my brother with your mighty hand and bring him peace and relieve his pain. In your word it says that by the blood of Jesus we were healed. Not that we will but that we were so I ask you to show Allen that you can’t lie so your word is true that we just have to hold on to your word and believe. I know that sometimes it’s hard to hold on to but by faith this will come to pass. So I ask you to move in this situation.
We thank you and advance believing that it will come to pass soon.
We ask this all in the mighty name of Jesus. Amen.
Hang in there Allen. I know that many of us a praying for you because we care about you my friend.
It seems so trite to say, but I will increase my prayers for you. I’m so glad you let us know how you are. Thank you for being honest about your feelings.
You are missed when you aren’t on the forum. You’ve always lent a sensitive ear and good common sense in your responses. Please keep in touch as much as you are able.
Allen5280 you are bringing tears to my eyes! I'm sorry you are in such a dark place!!! I'm feeling like you as far as the pain goes, chronic pain in back, legs, feet, arms, hands, headache and both eyes! MJ doesn't help me, most of it doesn't agree with me. I spend a lot of time in bed.
Hate to hear there are others suffering and hate to hear that your unable to find relief even more. It has taken awhile with the combination of cymbalta, flexaril, baclofen edible canibis (THC and CBD) smokeable canibis and a canibis tincture. The CBD aspect takes time to take effect somewhat like the cymbalta did. It's all a regiment and if any part is not available I get in a really really bad way. I have horrific spasticity. My doctors want to put the pump on and i dont want it. The caninis has also got my bladdar incontinence almost completly resolved. I can go without having to catch or use concentration techniques anymore. I've been going on a regular basis. My cannabinoid intake is very high. It used to make me kind of out of it at first in the evenings. I became accustom to it as with any other medications. When I was on high dosages of lyrica it messed me up way more than the canibis. The opioid meds I cant tale either cause they mess me up and make it so I cant #2. It's bad!!! I've also do stuff like drink green tea forinflimation reduction and am trying to learn about other stuff that I have read on here for good antiinflamatory stuff. Any pain I can reduce is an all around better existence. I hope you can find some relief. I spent alot of time in my recliner but I'm trying to do more to help reduce pain.
Oh Allen, my heart aches for you. Please know that your virtual family is here, believing in your ability to emerge from darkness and shadows into dappled light and clear skies. Those of us who live alone, ignored or abandoned by those we love, understand your struggle all too well. As my mother often said, there but for the grace of God go I.
Thank you goatgal I have been doing a little better. It's why I'm trying to get back to things and try to so more than I have been able to. The last few months showers, feeding myself (when I would feel up to it). I found there were times where a week would pass and the only things I was eating were saltines and granola. Pretty much just enough to keep a bird alive. My appetites was non existant) Laundry and other things just piled up and I was doing everything I could just to hold it together. I started walking some a couple weeks ago. I made my first walk up to the clubhouse to see if I could make it to haul up some laundry. A day or two later I took another walk of about 3/4 a mile around the park here. Then I bumped it up to a lightly weighted pack to 1/2 mile hike (round trip) to see how that would work. So a few days later I partially filled a backpack with laundry and hiked it up to the clubhouse laundry and did it and back. One been doing that and have increased my laundry sizes to a full pack so its weighing in about 25 to 30 lbs. The hike up to the point laundry is all uphill so getting there is tougher but I get to rest while my laundry is in cycle and then all downhill home. Keeps me going even when I'm not feeling I to it. I'm guaranteed to make that hike when the last clean pair of undies get used! 😂🤣😂🤣😂
You have been deep in what I think of as the pool of depression. Now, after touching bottom you are rising to the surface to begin breathing again. In my own struggles with depression, I have learned that the way to return to myself is as you describe, by taking one small breath at the surface. Don't rush the process. Continue those short and purposeful walks. Eventually you will add another small step or task as you emerge from the pool and return to your life. A day will arrive when you realize that the darkness was lifted, perhaps only momentarily. Celebrate that and look forward to those brighter moments. Be kind to yourself: you are a good and valued member of a community. We here appreciate our conversations with you and like you, many of us struggle with the losses we suffer when MS appears. Thank you so much for letting us know where you have been.
It sound like you can be having some depression. I don't know you level of functioning because of MS, I know there is great variation from person to person. You might go to a community mental health center and have an evaluation to see. I understand the professional identity and the loss of that. I am a minister and I stopped preaching because of the vision that I have, and I felt the loss of that part of my life. I was then working as a mental health therapist. I went back to preaching fill in and am now preaching at one church all the time again. They know about my vision problems, so they just put up with me.
With the loneliness you might attend a support group for MS, attend a church, or join a service organization like the Lions or Kiwanis. I smiled when you said you named the spiders. I found a spider in my sink this morning, I washed it down the drain. Maybe I should have made him/her a pet.
Yes, this is the hardest looking forward I have ever had (that I recall). What I found I have to do is whatever I loved at one point or another in my life. I have always been sort of an artist...no training but still selling an occasional piece. I have just been juried and able to show and sell at our local art venue. What a thrill that is as I am older than dirt!
I love music and was a passable piano player...my coordination almost makes this a joke. But I am doing it.
I do laugh at my blunders a lot. I am relearning many things I have done and learning many new things. Yes, it is frustrating and I am trying to get rid of things in my life that aggravate me. I doubt I will be successful at all of it, but it is very interesting to learn how to circumvent the clumsiness and still achieve success.
And, maybe most important, I am intentionally joining a group. I am naturally introverted and don't generally join much. But there are so few people where I live, I felt I just had to find some others who I would enjoy and who might enjoy me. I have found I enjoy their life experiences though I feel like a voyeur. Ha, ha!
I'm new is texting on this forum but been reading since the beginning. YOU matter and I love you. I wish I lived close by and could be a friend who could visit YOU. Help you clean your place help you repair it. YOU ar important to ME and everyone on this forum. God LOVES you. And YOU are special and contribute with your words that touch my heart and soul. Please DON'T give up! NEVER GIVE UP. Every breath you take means YOU belong here on this earth. I pray/hope you can feel how much you matter in this world.
If you can afford it, perhaps you could hire someone to come in and clean. A fresh place to live might help perk you up! Home bound meals will at least bring you some food. I hate depression. I am clinically depressed and have been for most of my life. (Meds help.) My sister is bipolar and has been super down (tried suicide) and finally got herself out and volunteering at a shelter. Animals are sweet and don't judge. They help!
Hi Allen, You would benefit with a MS support group. In some areas the MS society pays for water aerobics and yoga. Great way to meet people and Laugh . We need to Laugh more in our situation ..it helps. You said you walked a mile , .WOW ...totally cool , something to be happy about for sure ! Can you slow dance ? that's something I miss. I have a walker I use to get to my car and struggle with it to get into Doc ,yes I can still drive , otherwise I have a powerchair I use , it tilts , it's purple , it's my mini transformer ,Lol.
Anyway , it is what it is , I choose to look to the brighter side and it is hard sometimes but I always like a challenge
Allen, I am relatively new to this forum and have never read your posts before. My heart was breaking as I was reading your message. I don't know you, but, considering your profession, you must be a strong person. Think about that. Be proud of yourself. This disease (or any other disease) doesn't discriminate. My dad died at 39 of pancreatic cancer and left behind me, his pregnant second wife (who then miscarried) and parents in the middle of his flourishing career. I got really angry when I read a post (not here) when, coincidentally, a 39-year old woman wished she had cancer instead of MS! I wrote back to her that my dad would have wished he had had MS instead of cancer. We are alive, think about it! I am not religious and will not keep you in my prayers because I don't pray. But I will keep you in my thoughts and try to help however I can. I hope you find your answer.
Allen5280, dear Bro' Whew!I totally know how ur feeling & understand where you are, the lonliness, the sadness, 😪😭😥 is enough to drive one crazy. You my friend are in a silent Storm, I've been there, & yes it always wants to pull us back down in the pit!! Only YOU can get YOU OUT!! Please place your hand on your chest💝💖Feel that? That's called purpose brother, YOU R Here for a reason! Whenever MS is on Your last Nerve, look up to YHVH & Scream/ Yell if YOU have to, HE's Always in Our Storms!
Even if YOU don't feel him, HE's there! & Remember, there's always a 🌈🌈double Rainbow when the Sun🌞☀Comes out of the 'Silent-Stormz!!⚡☁🌑
YOU CAN DO IT! Many Deep Prayers R going up for YOU!!🙏🙏🙏💐🌸🌷🌺THE SUN WILL COME OUT SOON! We All Luv ya Bro! Always!👍🎁
Hi Allen...I had been wondering what is going on with you so I’m very glad you posted to update us. I’m sorry that you are in such a dark place and hope you can find your way out. I would help you if I lived closer. Even if it was just to go with you on your mile walks. (I’m still working on walking more than a mile and a half without my legs becoming jello.) I don’t have depression but understand the weirdness of having to leave a career that was a huge part of my identity. A wise counselor has helped me see that my career and all of my training will always be a part of me. I’m learning that I can still help people because of it. Part of the new normal I work in accepting. I miss the social interaction of work and do get lonely at times but am working on finding replacements for what I miss. I think people underestimate what happens when you live solo and have to retire.
I hope you can find things that will work for you. Baby steps...you know? And know that your many online friends here are rooting for you.
Hi Allen5280 this is ssdw1958 also sandrawood I signed into the app and I can’t get my name off this thing.
I haven’t heard from you in a long time. I’m sorry to hear that you are in a low point. I’ve been going through the same thing it really stinks that I can’t work anymore I use to work with young children. It’s the adults I would rather not work with. I said to my neurologist when I had my last appointment that I thought I was depressed and he said to me that I didn’t sound depressed I sounded like I was frustrated. I looked at him and said that’s what it is but I just can’t stand this MS
I am also stuck in the house I get excited when I have an appointment it means I can go out side.
Like tomorrow or should I say this morning I have my ocrevus infusion let me tell you I am not excited about this appointment I just want it to work.
You talk about your spiders and other creatures well it was a number of years ago we had a lady but that was in the house over the winter my husband and son and I kept it alive over the winter months there were times when we didn’t see it and we all figured that it died in the house. We were wrong that lady bug lasted till the spring.
I hope you feel better with the weather getting better. Our weather here in Massachusetts has been raining so much it really needs to change we really need the SUN TO SHINE.
Allen, It is so good to hear from you again, even though it hurts our hearts to know what you are going through. I remember praying for you and your brother during the hurricane a year or so ago in Houston. Does he know anything of your situation? Please let him know. Maybe you could move closer to him, so that he could be of a little more help to you. We love you on this forum, and many of us will be praying for you and your mental and physical situation. God can bring people into our lives that we have no knowledge of, who can be of great benefit to us. Please try to get out somewhere. Go to a park, and sit on a bench and talk to people. You will never know who you might meet who could be uplifting and helpful. Don't stay in your little cave alone, if you can muster the strength to get out of it. The sunshine and fresh air in your lungs can help you face your issues better. You're in my prayers! God answers prayers. The Bible says so!
Allen5280-happy to hear from you and glad you posted an update. Wow, I’m impressed you walked a mile this week-that’s an awesome start in fighting! I like the last statement you said too in your post and how true this is.
I’ve had depression-off and on before in my life and since Dx
6 years ago. It has set in more since last year with some MS progression. It’s VERY hard to push myself to do something different than the daily routine, but you did your first walk..Congrats! Depression feels like a bottomless pit and I’m searching for a way out sometimes and sometimes I don’t care, until I get sick of it and force myself to do something different to help me and usually, I had to reach out for help too. It’s really hard to pull out of and you’re not discouraging anyone with your posts. We are all in this together and have hard times too but support each other. I’m sure there are many who can relate. Depression & anxiety are common with MS. It’s not only where brain lesions are located but the frustration of daily struggles especially when things change and become worse. Keep it up! Nikki
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Hello
Hello everyone.
Finally getting into seeing my neurologist 
Hello World from a newbie
