I could use a little support (living with multiple disabilities)

[FilmBuff]

Hi all,

I normally loathe to talk about myself, but recent events made me feel this is the right time to make an exception to that rule. I am assuming this is the correct section of the forums to post this, as Strichley posted about her broken wrist and, well, this is kind of somewhere in the same ballpark.

I'm a person living with multiple disabilities (I do not wish to go into details at this point, but may disclose a bit further at some future point) and the last year or so has been one of the roughest years of my life. There have been a number of incidents, including one that involves the health of a beloved relative who is in her 80s, that have been deeply and profoundly shattering.

The future looks pretty bleak for me, although I am trying very hard not to lose hope. I would not say I am at the end of my rope, but I do feel as though I've never faced a more trying period in all of my life.

I want you all to know how profoundly grateful I am to have a space where I can come to talk about movies (mostly) and a few other things, like TV shows and other general-interest events such as the Olympics. It really makes my day sometimes just to have the chance to chat with the very friendly folks we have here in the MF. It has made a big difference for me, and for that I am profoundly grateful.

I'm having to fight back tears as I write this, because I do not want to feel like I am pathetic just for reaching out and letting you know that any and all support would be deeply appreciated. I'm usually much more reserved than this, and perhaps I have been too reserved about my personal situation.

If you are non-disabled and in good health, I urge you to cherish each and every day that you get to spend on Earth, because you really don't know what an awesome thing it is when you don't have to deal with potentially life-threatening situations every day of your life. If you are disabled, then know that you are not alone, and I hope to be here to offer some support, as well, to the extent that it is humanly possible.

Most importantly of all, do value you vision, if you have never had to deal with any macular degeneration condition, because there's really nothing quite like being able to watch a beautiful movie and marvel in all of the colors and the amazing sights many of the movies can bring to your life.

I hope you have a blessed day

[Allaby]

Sorry to hear you are dealing with health issues and other problems. Life can be tough sometimes. Hang in there. I hope things get better for you and your loved ones. I enjoy your movie posts and reviews. Sending positive/hopeful thoughts/vibes and well wishes.

[FilmBuff]

Sorry to hear you are dealing with health issues and other problems. Life can be tough sometimes. Hang in there. I hope things get better for you and your loved ones. I enjoy your movie posts and reviews. Sending positive/hopeful thoughts/vibes and well wishes.

Much appreciated ❤️

[Citizen Rules]

FilmBuff I didn't know you had so many issues that you are facing...best wishes for you. I've enjoyed talking to you and the many threads you make give us MoFos a chance to keep ourselves entertained, so thanks for making them:)

Do you mind if I ask if you are a young person? I assumed you were in your 20s but you mentioned macular degeneration condition which is often common in the elderly. I know someone who has it and receives treatment for it.

[hownos]

Sorry to hear this. Hang in there and all the best.

[FilmBuff]

Do you mind if I ask if you are a young person? I assumed you were in your 20s but you mentioned macular degeneration condition which is often common in the elderly. I know someone who has it and receives treatment for it.

Thank you for your words of support <3

In answer to your question, there are conditions like retinitis pigmentosa which affect people of all ages and for which there is currently no medical treatment available.

There is much hope among the visually challenged community that research will eventually lead to a cure for RP, possibly involving gene therapy or something similar.

[FilmBuff]

Sorry to hear this. Hang in there and all the best.

<3

[Thursday Next]

Sorry to hear about this FilmBuff, wishing you well.

[FilmBuff]

Sorry to hear about this FilmBuff, wishing you well.

<3

[cricket]

I had a relatively minor health issue a couple of years ago and it really opened my eyes. Nothing is more important than feeling ok, and I'm now more appreciative of certain things while being less concerned with other things. My heart goes out to those who have to deal with more serious issues and issues that don't go away. There's not a decent human on earth who wouldn't wish you the best.

[Takoma11]

I'm a person living with multiple disabilities (I do not wish to go into details at this point, but may disclose a bit further at some future point) and the last year or so has been one of the roughest years of my life. There have been a number of incidents, including one that involves the health of a beloved relative who is in her 80s, that have been deeply and profoundly shattering.

The future looks pretty bleak for me, although I am trying very hard not to lose hope. I would not say I am at the end of my rope, but I do feel as though I've never faced a more trying period in all of my life.

Everyone---whether they are in perfect health or have chronic illness(es) of somewhere in between---has their own personal "normal". Being thrown off of your normal, whatever that is, can be really stressful. And if you're already coping with higher-than-typical stress in your normal state of being, then additional challenges can make you feel like you are underwater.

You are definitely not alone in this. Health issues are particularly hard because so often there is nothing to do, and they are totally out of our control.

You can always share thoughts here, or in PMs. I hope that you have the help of a mental health professional (if that is something you are able to access). I know quite a few people who deal with serious physical disabilities and also mental health issues, so if you are in need of any resources/recommendations, I'd be happy to solicit some advice from them.

Take things one day at a time, one hour at a time, or even ten minutes at a time if you need to. I've been using an app called Finch and it has been really helpful for me. (The "First Aid Kit" has been a lifesaver during some challenging days).

[FilmBuff]

Thank you kindly cricket and Takoma11 <3

[KeyserCorleone]

These are the kind of things that let you know to try your best in life. Learn what makes whatever disabilities you may have "disabilities," tame the cons humbly, and then own the pros proudly. It might take years, but the rewards will be worth it. This is what happened to me when I lost my grandmother a few months ago.

[gbgoodies]

I'm sorry to hear about this, and I hope things get better for you soon. I've been going through a lot of family stuff recently, so I understand how hard this can be. Sending you good vibes and hugs.

101874

[FilmBuff]

I'm sorry to hear about this, and I hope things get better for you soon. I've been going through a lot of family stuff recently, so I understand how hard this can be. Sending you good vibes and hugs.

101874

Thank you <3

[Wyldesyde19]

I’m sorry to read this. I sincerely hope things get better for you.

[FilmBuff]

I’m sorry to read this. I sincerely hope things get better for you.

Thanks!!

[Robert the List]

I’m sorry to read this. I sincerely hope things get better for you.
same. :(

[Robert the List]

If you are able to, maybe you could sometimes get outside somewhere you can listen to the breeze or to birds or any kind of natural sounds. Or in the spring/summer, feel the warmth of the sun.

This might sound like a very inappropriate plug (which it is not intended to be), but honestly the first thing that I think of as a suggestion is to listen to whitney houston. Her singing can be magical. If you want I can make some recommendations on a more appropriate thread.

This is just what I think of.

Or if this doesn't work for you, maybe someone else like Maria Callas, Pavarotti, or some classical music that works for you. Maybe listening to some plays. Do you like cricket? Test Match Special is enjoyable company and listening when England are playing.

Wishing you all the very best, and many many positive moments and times. Remember, we are incredibly adaptable.

You are very brave and I think a strong person.

[honeykid]

Wishing you all the best, FB. :) As someone who's has, and has had, more than their fair share of health issues, both mental and physical, I know that sometimes it's all you can do to sit up in bed, let along do anything.

Try to be open and honest with yourself and those around you. I find that mentally that really helps. Lean on your support and try not to feel bad for having to. Most of them will want you to and, not only that, wish they could do more. Feel the love and comfort of those people. :)

[iluv2viddyfilms]

The future looks pretty bleak for me, although I am trying very hard not to lose hope. I would not say I am at the end of my rope, but I do feel as though I've never faced a more trying period in all of my life.

I'm having to fight back tears as I write this, because I do not want to feel like I am pathetic just for reaching out and letting you know that any and all support would be deeply appreciated.

Well said, thank you for sharing and it's tragic when people are struggling with things, especially when they are beyond our control and beyond our ability, through choices and action, to resolve negative and difficult situations.

A couple of questions, and just answer what you feel comfortable to do so:

1. Do you have a job or career or does the disability prevent you from working?

2. Do you have a spouse, children, or family for social supports?

3. Are you financially secure or have a stable residence or ability to pay basic bills and maybe save a little?

Usually these are the three biggest indicators when looking at the future. I also have a few severe health issues, so even though everyone's situation is different, there is an ability to empathize and partially understand what people are going through.

[FilmBuff]

Well said, thank you for sharing and it's tragic when people are struggling with things, especially when they are beyond our control and beyond our ability, through choices and action, to resolve negative and difficult situations.

A couple of questions, and just answer what you feel comfortable to do so:

1. Do you have a job or career or does the disability prevent you from working?

2. Do you have a spouse, children, or family for social supports?

3. Are you financially secure or have a stable residence or ability to pay basic bills and maybe save a little?

Usually these are the three biggest indicators when looking at the future. I also have a few severe health issues, so even though everyone's situation is different, there is an ability to empathize and partially understand what people are going through.

To be completely honest, I'd have to say that the future is in flux and much of what will happen in the long run will depend on what happens in the next few months... I do not want to jinx it by saying what I'm hoping will happen.

But in the short run, it would be incredibly helpful if I could finally get the medication I need very urgently and that I've been requesting - literally - for months now. I recently turned to a disability-rights organisation to help me sort out what's holding things up... fingers crossed!

[beelzebubble]

But in the short run, it would be incredibly helpful if I could finally get the medication I need very urgently and that I've been requesting - literally - for months now. I recently turned to a disability-rights organisation to help me sort out what's holding things up... fingers crossed!
Good luck with that! You know we here at MOFO are all pulling for you.

[iluv2viddyfilms]

To be completely honest, I'd have to say that the future is in flux and much of what will happen in the long run will depend on what happens in the next few months... I do not want to jinx it by saying what I'm hoping will happen.

But in the short run, it would be incredibly helpful if I could finally get the medication I need very urgently and that I've been requesting - literally - for months now. I recently turned to a disability-rights organisation to help me sort out what's holding things up... fingers crossed!

Yeah it's truly crazy that we live in the most prosperous and innovative nation in the history of mankind, yet we have so many people who are struggling with access to medicine or to afford medicine they need to live. It's incredibly strange and bizarre. I pray you get what you need.

Our healthcare system is largely a farce.

[FilmBuff]

Thank you beelzebubble & iluv2viddyfilms <3

[AKA23]

FilmBuff, I am so sorry to hear of these struggles that you are going through. Stories like yours are part of the reason that I went into a career in public service. Everyone's situation is unique, and although I have had my share of health issues as well, and I know it makes my life much harder than it otherwise would be, I can't say I fully understand what you are going through. I do hope that I can offer some perspective or a different lens for you to view these things, or at least, to consider. I think something that has always been true for me and is helpful to reflect upon is to think about who I might be if I didn't have those struggles and if I didn't have to overcome so much in my own life. I like to try to reframe the struggles and think about how they might in some way serve a larger purpose, or might in some way have made me different, or better, in some way, that I otherwise wouldn't be. A way that's helpful and good and which allows me to better serve others and which motivates me to do the work that I do and live the life that I feel called to live. I genuinely feel like the struggle has made me first, quite good at dealing with stressful situations, and also, a more empathetic, compassionate person towards others in society and those people that I know in my personal life. I think it also has made me quite resilient. If I can deal with this, what can't I handle? I've been through these fires before and come out the other side, and I can and will do so again.

I think I'm also kinder to others, I think I'm more driven to help others, I think I'm more sensitized to their pain, and I think I'm more resolved to be a force for good in this country because of everything that I've gone through. I've also wanted to help others to help avoid the kinds of things that I feel, or the kinds of things that I've had to face or experience. I don't think I'd be as much that way if my life had been easier. While this doesn't necessarily make those struggles good, or something that you welcome into your life, I think it does sometimes help to give those experiences meaning. Advantage can come from struggle, but those advantages are not always readily apparent and sometimes it takes digging deeper for us to see them.

I've often heard it said, and I think it's true, although I am not always successful in living my life this way, that it's not what happens to you, it's how you react to it, that defines who you are and who you will become. So, how are you choosing to react to what is happening in your life? Are you letting it get you down far too often in ways which may not be constructive, or are you using it to light the fire within you to continue tackling the struggle and improving what you can control? Are there aspects of your situation that you can change, and are you focusing on doing that, or are you allowing the struggle to rob you of the energy and self-efficacy you need to make things better? How are these experiences fueling you? How have these experiences changed you? Is there a way, deep down, that you can authentically find and believe in, that these experiences have added to your life in some way, or made the way you show up for others in your life better than it might otherwise be? If you wouldn't be that person without these experiences, then they may be part of what made you who you are, and in that way, could something good rise out of all the challenges? Do you know what that is, and are you nurturing it and supporting it? The last thing I'll say is that it is often helpful to ensure that when going through adversity, to focus on the basics, eating, sleeping, and other self-care activities, and to be kind to yourself and do things that you enjoy and that fill you up rather than depleting you. What are those activities for you and are you dedicating time to doing them? Stay strong and safe FilmBuff, and I hope that better days lie ahead for you. The system should work better for people like you, and one day, it will. That day is coming! Let me know how I can best support your journey, because it matters to me, and many others here on the board. I hope this is helpful.

[Captain Steel]

Hi FilmBuff.

I can't offer any advice better than what's already been given, but I will add my support and my prayers to those of everyone else here.

I kind of feel my prayers are special only because I'm an Agnostic (I say that kind of tongue-in-cheek because I fantasize that if there is a God, He might be slightly more interested in the thoughts of analytical doubters & those humble enough to admit they don't know, than He is in recitations of memorized platitudes & rhymes - not that there's anything wrong with those).

It's weird to be an Agnostic, yet pray more than some proclaimed believers.
Don't know if you ever saw the end of Inherit the Wind (1960), but I kind of see myself as Spencer Tracy's character, when Gene Kelly accuses him of being "a fraud... the Atheist who believes in God."

Anyway, I'm rambling again. So I'll say I can relate, I'll pray, I'll visualize positively for you, and feel free to let us know how its going, or just if you need a little uplifting now & then.

[PHOENIX74]

Hi - I don't think I'm very good at saying comforting things but I did want to say that I read your post (and the rest of the thread) and that there's yet another person here who now cares about your situation and will keep you in his thoughts. Simply that. I have an affection for all the regulars around here, and enjoy reading your thoughts regarding films you catch up with. Genuinely sorry to hear that you're in any kind of distress.

[FilmBuff]

Thanks kindly for all of the supportive comments.

One of the things that has changed recently in my life is that I have been taking some of my meals at a nearby senior center. No, obvi I am not a senior, but the center offers meals to seniors and people with disabilities, so I'm welcome to join them.

It is very moving, and also sometimes a little bit sad, to get to know so many people who are in their twilight years. Many of them, indeed most of them, are very nice. But after a few months, it becomes a little bit sad to see them, sometimes slowly, stop coming to the center.

Sometimes they get sick and have to stay home for an extended period of time. Sometimes, they come back after an illness. But there are also times when they never come back, and you either don't hear from them again, or you hear that they have passed. It is really heartbreaking.

It is a really eye-opening experience, because many times we do not really think very much about the fragility of a human life, how sometimes we can be here one day, and gone the next. Most of them, I should hope, still have a long way ahead of us. But whether or not that is the case, we really owe it to ourselves to live each day to the max. Enjoy life (and if you are so lucky, good health) to the max, and really try to do all of the things you want to do in life, while you can.

[gbgoodies]

Thanks kindly for all of the supportive comments.

One of the things that has changed recently in my life is that I have been taking some of my meals at a nearby senior center. No, obvi I am not a senior, but the center offers meals to seniors and people with disabilities, so I'm welcome to join them.

It is very moving, and also sometimes a little bit sad, to get to know so many people who are in their twilight years. Many of them, indeed most of them, are very nice. But after a few months, it becomes a little bit sad to see them, sometimes slowly, stop coming to the center.

Sometimes they get sick and have to stay home for an extended period of time. Sometimes, they come back after an illness. But there are also times when they never come back, and you either don't hear from them again, or you hear that they have passed. It is really heartbreaking.

It is a really eye-opening experience, because many times we do not really think very much about the fragility of a human life, how sometimes we can be here one day, and gone the next. Most of them, I should hope, still have a long way ahead of us. But whether or not that is the case, we really owe it to ourselves to live each day to the max. Enjoy life (and if you are so lucky, good health) to the max, and really try to do all of the things you want to do in life, while you can.


I understand what you're saying about being with elderly people.

My mother-in-law is 90-years old, and she lives in an assisted living. I go there every day to visit her and I've gotten to know a lot of the other people who live there.

It's sad to see how many of them have very few (or sometimes no) visitors. Some of the other residents there see me every day and they immediately smile when they see me because we sometimes sit in a common room and chat as a group, so they feel like I'm visiting them too.

It's very stressful sometimes because every once in a while an ambulance will show up and we all just hope that it's something minor, but usually it's someone who fell and has to go to the hospital, and we just hope that they're okay.