My MSAA Community

MS and isolation

Hi I am 39. I have MS, fibromyalgia, spinal cord siezures, etc. I struggle with depression, especially when my family reacts to my attacks by telling me I'm an embarrassment if I'm in public. That I shouldn't come out when I'm like that. They don't understand that I spend so much time hidden away without the strength to walk or roll outside. I just want to be out sometimes no matter if I'm weak, fatigued, having gait and balance problems, numbness, mumbling and not making sense, attacks of dyskonesia spacticity, seizures, and retardation basically, but sometimes even if I'm not all there. I still want to be a part of. This has just been very very hard for me and my family since the beginning, the worse I was the more they ran away because they can't face it. How do we get beyond this? I feel suicidal and could do so within an instant without thinking when this behavior occurs where they're embarrassed by me and don't want me around, and certainly won't help me get outside. It's frustrating. I was just denied ssdi again, Medicaid is approving a powerchair, but I have no money to pay for a powerchair lift, ramp, ramp to entrance. I hate feeling helpless and hopeless

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Have you tried to contact MSAA and see if they can assist in having your home ramped for access? Also, they may be able to assist in a power lift, I do not know what limits, if any, MSAA has, but, at least it is a starting point.

The only recommendation I can make for the "family acceptance" of your illness, would be if they will attend family counseling to maybe better understand what MS and your other health issues may cause our bodies to do.

God Bless and may God heal you with his love.

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Thank you. This has been going on for 10 years. Is that normal for family to run for that long?

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Tanyagoeres , Don't isolate yourself anymore! You can visit us almost anytime and talk with a friend, who is struggling with MS, too. Have you talked with your Doctor about your suicidal tendencies? Are you on an anti depressant? In addition to MSAA, check with the MS Society in your area for an MS support group. Don't give up on your family, they are probably as afraid as you are of this disease. Is it possible to get family counselling? Sending good thoughts your way!

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Tanyagoeres hi, this is a safe place to come and share what you are having to go through. Have you tried talking to your family, asking them how they would feel if it was them? I pray that you get some understanding, and it should be them that's embarrassed about themselves, not helping you. Keep in touch, I understand the suicidal tendencies. Something that helped me was making it a goal to find something to either laugh or smile about every day. Blessings Jimeka 🦋 🌈

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@tanyagoeres

Dear Tanya,

My heart breaks for you. MS is a very difficult disease to "handle" for ourselves, and for our loved ones.

I echo the sentiments expressed here by my peers as well as the recommendation to contact the NMSS for multiple reasons.

You have found a very supportive group of friends here who understand what it is like to go through all of the different challenges that come with MS. Welcome, and I hope you participate often!

I can't believe, given your multiple diagnoses, that ssdi has denied you more than once. How frustrating!! Grrr! The MSAA should be able to get you help with that appeal. I am sure that if you went before a judge, that your plight would be more evident. Goodness!

Regarding being an embarrassment, you certainly have nothing to be ashamed of. I understand that it is painful, though. My family acts the same way, but they won't come out and say it. I caught my sister making fun of me to her friends more than once. It really just goes to show how callous and shallow she can be. It makes her look bad, really, not me. Has it gotten better? A little.

To my Mom, appearances mean a lot. She is a little bit of a snob. Lol. It's hard to make being handicapped stylish. I know she is self-conscious when we go out in public. She doesn't like the stares. I have to chalk that up to being her issues.

I hope that hearing someone else's examples help you to see that it is the family member that has the problem, not the patient!

Good night from the East Coast!

Lisa

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Thank you for everything that you've said. Some of the family reactions I've experienced by family. Not just my husband or son, I was honestly never expecting. Less phone calls, forgetting to invite me to family get-togethers even within 20 miles of my house, events, like nieces performances, day trips, anything. It just over time is really disappointing that they have given up and don't even check in and see if I'm having a rare good MS day and might want to go. My sister took me to lunch a couple years ago and I needed my rollator she packed it in the car but when we got there parked far from restaurant then when I wanted to get out my rollator all of a sudden she refused to be seen with me with that. Just never expected behavior like this especially when family had always been close. I'm just being honest. Truly I try to have faith, I'm generally positive. Suicide is not something I think about all the time or anything it's just specific stressors suddenly turn into severe emotional distress, where self harm has happened or almost happened in an instant.

I have alot more to say but msing so talk later

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Tanyagoeres

Hi Tanya,

I understand what you're saying, unfortunately. It hurts the most when the people you love the most let you down. Those are the people you were counting on to be supportive, so it catches you off guard, and it really hurts, when they say or do something insensitive. As you said, you weren’t expecting it to come from them. The disease already makes you feel vulnerable, and I think their lack of support makes you feel even more vulnerable.

You already have enough on your plate, right? You're struggling to cope with the illness, it's affects on your body, the emotions that come with that, etc., and if that weren’t enough, you get this additional weight that you weren’t expecting. You have to cope with the people in your life, and strangers too--how they react to your illness, when they fail to support you, when they are embarrassed by you, how some are absolutely clueless about how to handle someone with an illnesses, the stares, etc. Ugh. :(

But before we spend TOO much time on the negative, … I am sure you have had other moments when someone unexpectedly does something really sweet and caring for you. Perhaps it is a family member that you weren’t expecting much from, who surprised you in this way? That happened with me. For example, one sister I expected way more support from, and was really let down, and the other sister was far better than I expected, so that was really nice. Oftentimes, it is a complete stranger that really moves my heart. In those moments, it is a very precious gift.

I hate it when family includes me less and even “sneaks” around doing things together without telling me!! That hurts a lot. :( I’ll give you an example. There is a sand sculpting competition held every year in Boston. Never been, for whatever reason, but in the last 5 years or so, I’ve taken an interest in it, and have really been wanting to go. I had it on my calendar this year, but didn’t think it was “do-able” this summer because of my MS (sound familiar?). My family has never been either. Well, lo and behold, on the day of the event, I got a text from my sister with a picture of a huge sand castle. Then, it hit me. She and my Mom and my niece went, but never said a word to me about going. I texted back, “Are you in Revere?? Wait. You went without me?!”…I could tell she had "slipped up" in sending me the picture. Before my MS, there would be no question that I would be there at this outing. We did everything together. Heck, we live in a two-family home, and my sister is right next-door! Long story short, I wasn’t included, and I wasn’t even told they were going because, lets face it, it’s a hassle to take me along with my walker or scooter, etc. It puts a cramp in their day. They can’t move about as freely. I slow them down. They don’t want to have to worry about me, etc. They didn’t say these words, but they didn’t have to. (We can read between the lines, right?) Bottom line: it doesn’t matter how hard we try not to be a burden, we still are, and, sometimes, family and friends just don’t feel like dealing with it. It get’s tiresome for them. It’s human nature, and they’re weak. I get it. It still hurts when it happens. I’m sharing this example so you'll know you’re not alone. I totally get that you should be invited anyway, on every occasion, even if it is just so that you have the opportunity to politely decline! They can invite you out of respect...

So, over time, I have built up my defenses and can (I think I can!) handle just about anything anyone can throw at me--the bad and the good. It is my goal to be able to handle these situations with grace. (I'm still working on it!) After experiencing the wide array of possible reactions to your illness, you begin to see that each one is a reflection on the other person, not on you, right? One person is embarrassed to be seen with you, and then a total stranger comes up to you, not embarrassed by you, and offers to help. What’s the difference?...that’s important to think about!

I’ve noticed that if I’m already stressed, or rushed, or hungry, or more tired than usual, etc., then it is harder for me to handle one of these situations well. Planning ahead and taking extra care not to be rushed, hungry, etc., goes a long way toward maintaining that inner calm.

Even though I have had MS for 12 years now, I know I’m still adjusting, emotionally, to all of the life-changes that come with it. It’s a process. Sometimes, a person will say something, good or bad, that just touches a nerve, and it triggers a release of the emotions around what you’re dealing with. You might not even realize, at the time, how much you’re hurting in a certain way because of the impact MS is having on your life, and then, bam, those feelings come flooding out of you when someone says or does something. I imagine that is what it feels like for you too?

I think, at these times, when you feel it very intensely, its good to recognize that there’s a lot of grieving involved with the disease, and that these emotions are an important part of the grieving and adjusting process. It’s normal. It takes time. You need to be gentle with yourself.

If you feel the need to act on this pain, then finding a good therapist now is really important for you. I imagine the MSSA and the NMSS can assist with finding one? You mentioned that there are specific stressors that really make you upset. That’s good that you have identified them. I think any therapist would want you to think about what your strategy could be for handling these stressors, when they crop up, so that you don’t get as upset?

So many of us here have experienced what you’re going through and I hope you’ll continue to share. We might not have “all the answers” for you, but you’ll undoubtedly get a collective “group hug” in response!!

:) :) :) :)

(Sorry this was so long-winded!! Oy! ;) )

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Tanya,

I send you prayers that your family will be more understanding. Would having your doctor speak to them help? I agree with team members recommendations. Pray some of it works out for you.

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I've heard strangers make fun of Me. But I have never suffered any family making this journey an embarrassment. It has Me a little "/GASP!" And "/Grrr" At the moment.

I have isolated myself in the past, but have moved away from that feeling of shame I once had. Family never did it to Me at least not intentionally, after all, true understanding takes time. Some never find it, and that's ok. Our journeys are so personal, it's hard for others to comprehend. Your mental and emotional health are what truly matters - seek it out, even in new unexpected ways if ways of routine are not working.

Isolating yourself will destroy you, surely.

I agree with the above; sounds like your family needs a counseling intervention. And if you're having thoughts of suicide, you need the support also.

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ItsChris

Many words of wisdom here!

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Tanya don't let these things bring you to entertain the thoughts of ending your life in anyway. I'm not a preacher but I'll tell you God loves you. On this site you will find that so many of us that suffer with this evil disease make it from one day to the next with faith. I'm a firm believer that when we are down to the lowest point there's only one way to look but up. If we fall in a hole we look up for someone to help us out. I know sometimes it hard to believe when we are going thru so much but you are not alone in your struggles. There are a bunch of people going thru so many struggles here that we all bond in this life we have been given. Bad and good. Jesus I come boldly before you and ask you to touch your child who's struggling with this attack from the devil himself and I rebuke this evil spirit in the name above all names. The mighty name of Jesus Christ. In your mighty name we pray. Amen. There are always some us here when you need us. Believe me when I say you are never alone or unloved. God bless and keep you.

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Beautifully said, Double51!

🕊

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Thank you.

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Anytime I can be of help just say so. I was diagnosed 4 months ago at the age of 65 and was pretty devastated for awhile but the support and advice from the wonderful people on this site helped through some rough times. I went thru a rough patch understanding how to deal with the physical and emotional changes that slapped me down in a days time. I went from wide open healthy to 0 in a days time. One day I felt great and the next day a hospital bed. But God and these great people put life back in me. So am I ready to return the love and encouragement I received. Yes. 100%. There is always somebody here that has been or is going thru anything this monster is handing out. So don't ever hesitate to reach out. Life with ms is possible. Good luck with your health and your family. God bless.

Donnie

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It must be very hard for you not having the support of your family. Just remember suicide is not the answer. My father-in-law committed suicide and what it puts the family through is horrible. They my benefit from going to some MS meetings. We went to some when I first found out I had MS. The doctors office told me about them. It helped my family a lot to go and ask questions, as well as hear others experiences. It might help your family and we got a really good meal. I am one of Jehovah's Witnesses and I get a lot of support from my congregation and faith. My friends are always there for me and keep me from isolating myself. That helps to combat the depression.

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Tanyagoeres, my friends here in this chat room have said everything I was thinking so hang in there. We care about you!

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Tanyagoeres Hi and Welcome to Our chat.😊 We are glad your here!

What your talking about is troubling to me tho. So the 1st thing I'm going to do is give you the National Suicide Prevention Lifeline. 800-273-8255.😊 Please talk to someone. Depression is not something to take lightly.

Now smile 😃, as I think mymsaa.org might be able to help you with your SSDI and might also help you with the ramp. 800 532-7667 ext. 154

As far as your family goes, I don't know what to say? But I'm sorry? For them, not taking the time to understand what we go through. And ~hugs~ to you for keeping your chin up!

May your Angels Watch Over You

Jes 🌠

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My biggest problem is the social security disability denials. I have asked for help over the years. I have won each chance to appeal because the administrative law judges are evil demonically possessed. They have given no weight to my drs opinions, gave weight to state hired doctors that have never seen me or examined me. Gave no weight to witness statement s. No weight to the opinion of one state Dr that saw me and said I was disabled. Gave no weight to all the disabled report s from my drs. Gave no weight to the opinion of the ssdi job guys that stated that there is no way that any employer would keep me even if they hired me. They specifically say that I am denied because of my age and education and in the judges opinion there is something I can do. They alj judges write horrible abusive twisted statements in their denials insinuating that my drs only know what I tell them. That I'm not trying hard enough, implying some how my nuerological, motor, gait, balance , numbness are fake, stated that I somehow managed to manipulate the state/county to give me a caregiver. It's just severe defamation of character and denials that make me suicidal. I have had 4 hearings. I have more medical evidence than any lawyer has ever seen. I learned that if you don't prove disability within 5 years of becoming disabled then they take away everything you paid in and qualified for and change it to $0

Then you never get disability ever. During the last nine years of fighting for this I lost my house. Which should never have happened. Moved into a rental with contaminated well, and high concentration of toxic black mold. I thought if I got my SSD we might have a way out. Something idk. I tried hard in life. I went to college I was a scientist. I did every form of therapy and treatment possible. As symptoms started interfering more, I was missing 35-50 days a year from work. I was eventually asked to leave and given a six months severence package. I filed for unemployment and filled forms out honostly like if I was unavailable for 40 hrs due to Ms attacks or Dr apt and was denied because of my health. I applied for SSA disability and then 9 years of this shit. If you really read this shit, abused, made to feel like a worthless nobody

Raised to think you worked you paid in. My Lawyers told me if you have a degree these judges have literally killed people denying them until their dead even though they have been given a cancer death sentence. I truly wonder the statistics on that. It all just makes me go into severe distress physically mentally and emotionally. And flares and attack s.

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Ssd Alj judge first hearing said that my chronic pain couldn't be that bad because I wasn't on pain meds. Yelled at me that I didn't have a prescription for my cane. Then this last time suddenly I'm referred to as a chronic opioide user. I'm only on hydrocodone 5-325 4 times a day. I never accepted it from drs for 15 yrs because I wanted a diagnosis and treatment not pain meds thrown at me. My hearings with my rollator I was yelled at again saying I didn't have a prescription. I said the MS clinic had to fill out paperwork for msaa or Ms society for them to give me one. This last hearing the denial said I quit my job in 2008 when they already know I was was given a severence package due to medical health reasons. The denials accept all my diagnosis'. At the last two hearings was in such bad shape that people in and out side of SSA building asked if I needed them to call an ambulance. On a day when things are that visible I never expected denials.

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@tanyagoeres This may seem extreme, but, if you moved, would you be able to appeal to a different judge in that area?

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Tanyagoeres its a rigged political system and judges respond to their own moods, their personal dislikes of personality etc etc. I worked for 2 disability lawyers as a paralegal fir 6 years, so I speak from experience. I lost all faith in our judicial system. Judges, like doctors, have a God complex and 99% of them abuse their position and peer. "Power corrupts and total power totally corrupts". I will be praying for you.

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@agapepilgrim

You "worked for two disability lawyers for six years?" How convenient for us! Would you recommend the use of a lawyer for disability applications, based on what you saw first-hand?

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Like others have said try the MSAA pass it by them and if you go to a church and even if you don't find out if there is a Boy Scouts troop in your area you could call them up and see if one of there Boy Scouts need to have a Eagle project if so let them know you need a ramp to get in and out of your house. Let them know that if they could find a lumber company to donate the materials they could make you a ramp for you. Let them know you do not have the cash.

Also you need to make sure an adult is looking over the planes.

Good luck

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