Feeling very alone and unable to manage

[Rhyl]

If you look at me from the outside, I am always busy. I'm involved in a local rescue, do a lot of work with my church and pagan group, own two businesses, and volunteer with another non-profit. I also work full-time.

I'm good at what I do, so people just appreciate it and ask me to do more.

I do say no sometimes, and most of what I do I really want to do. But the last month has been brutal. I am on a committee that plans and executes the largest fundraiser for our rescue. It's months of meetings, but the big part is the days before and of. This year I helped people load cars for the silent auction and was on my feet the day off for 8 or 9 hours. Took me days to recover. I also have costochondritis, and it flared considerably. Same thing happened a couple of weeks ago. I am leader of our pagan group at church, and we planned a first service for us at Samhain. Again, months of meetings, some kind of planning every day, and two days of set up, delivering the service (and sermon!), and then take down of everything.

I get severe ribcage and sternum pain from the costo with lifting or even moving around a lot. And on top of that, I get the all-over pain; I mean, I was lying in bed and had this all-over throbbing pain. That on top of intense pain in my left hip, which I am wondering if it may be fibro (pain is not in the bone, but in the muscle and fascia).

I struggle with depression anyway, but the pain magnifies it a hundred-fold. I finally found a couple of things I actually enjoy doing, and they are ruined by all the pain they cause.

Of those who know about the pain, few really understand. I just want to stay away from everyone and lie in bed all day and cry at this point.

 

[cookiebaker]

i can certainly empathize with wanting to just lie in bed and cry. But as I am sure you are aware, that is about the worst thing you can do.

I know you enjoy doing all these things, and the volunteer work is commendable, but perhaps it might be time to cut back just a little.. and if anyone asks, you can just tell them it is for health reasons if you dont want to go into details.

Before covid, i was a part of a small group (basically two of us, with a 3rd on occasion) that organized and ran vendor events, with booth & prize proceeds being donated to various charities. We held at least one event a month during the winter months, sometimes two.. needless to say, this, and working full time kept me VERY busy.. and all the while my pain was getting worse and worse.. both from the fibro, and from other issues.
I had to bow out of the event planning because I just physically could not do it anymore.

 

[sunkacola]

Rhyl,

All that you do is highly commendable and would be for anyone, chronic pain or not.
But to me it sounds as if you are paying more attention and energy to things outside yourself than you are to your own health, and that is something guaranteed to backfire.

I strongly suggest that you have some good talks with the rescue organization, your pagan group and church and other places you give your time and energy, and explain to them that you need to cut back for the sake of your own health. It sounds to me as if everyone appreciates you and would not want you to damage your own health to do the things you do. If you let them know the toll it takes on your body when you do all of this, they will support your stepping back and doing less.

If you don't do that now, the time may come when you collapse physically and won't be able to do any of it....possibly even in the middle of getting ready for something. And if you push your body too far for too long you could even get to the point where you cannot do any of it at all any more, nor the other things in life that y ou enjoy.

Your own health has to come first, always, because if you don't have that you won't be able to do anything for anyone else or for the causes about which you are so clearly passionate. I know it's hard; been there and done that. But it's necessary. Once you get used to it, and other people get used to it, it was such a relief not to be doing more than I should and not to be causing myself so much pain on top of what I would already have. And by cutting back, I am still able to do it all....just far less in quantity. Seriously consider this.

 

[Rhyl]

Well, actually, nearly everything I do I do here in my home now. I rarely go out, and the work I do for the rescue and church requires minimal on-site presence through the year. For the rescue, I'm mostly doing just that one event a year, which requires maybe 4 meetings a year and for me to be on-site one day, with the second optional. For church, I plan things, but I don't have to go more than once a month or even every other month. I think, as I look back on it, when I posted originally, I had just had an awful month--October was seriously busy this year. With church, it was our first service for the congregation, so a TON of planning was required.

Honestly, today I took two hours and went to the laundromat, and I feel like I'm going to die. That's after not really having much to do for quite a while. I can't live like this anymore. I am better--but still not good--if I just sit here and don't do anything, but that makes my depression a LOT worse. What I do is really minimal now, and I can't imagine cutting back more.

 

[Dimps TheAlien]

I'm new here. I understand. I cry myself to sleep most nights because of the pain, both physical and emotional. I keep going but I am afraid I am way past burn out and my thoughts get dark. So yeah, I hear you. I am sorry you are in so much pain and discomfort. But I guess for me, reading your post, I don't feel so alone. Thank you for sharing.

 

[sunkacola]

@Rhyl , when you reach the point of feeling you can't live like this any more is the time to take matters into your own hands as much as you can and dedicate yourself to doing all of the things you can possibly do to allow your body to feel better. You have no doubt read my advice post on this....was there anything there that helped you at all when you tried it? If you've tried all of those things, is there something else you can think of to try, or a modification on something in my post that seems worth trying?

I do not mean to hammer on that post of mine. But I do firmly believe that, while fibro is not curable it is entirely possible to make it far more bearable and ease some of the symptoms if a person dedicates himself or herself to doing everything possible to find the combination of things that will work best for them. I know because I have done it and so have many others.

AND.....at the same time, I still have days when going to town will lay me out flat for the next 24 hours or so. There's no magic bullet, but I know that if I had not done all the work and experimenting I did I would be far worse off than I am now.

Wishing you the best..................

 

[cookiebaker]

Well, actually, nearly everything I do I do here in my home now.

Just because you are doing it from home does not mean it is that much less stressful - the stress of doing all this is where a lot of the pain of fibro comes from. Stress impacts our bodies far more than most people realize.. And with all you have on your plate, I simply can not imagine not being stressed at least a little - probably more than you think.

on the flip side of that coin, sitting on the couch doing absolutely nothing is not good either, as you already know.
You need to find a happy medium somehow..

If you have not read thru sunkacola's pinned post under "general discussion" I highly recommend you do so.. even if you have, but it has been a while, go refresh the memory a bit.. I know I have been through it more than once myself.

Dietary changes can have a HUGE impact on how we feel.. I learn this more every time I make a change that I didn't think would really help, but turns out it has... like the nightshade veggies.. I had pretty well cut all but one a long time ago.. "white" potatoes was the only one I still ate regularly - I honestly did not think it would matter.. but here several weeks after cutting them, I had breakfast out after my procedure the other day, and had hash-browns with it.. oh boy! it Mattered! I had not been that bloated & gassy feeling since my last "fast food" hamburger back in August. and it will take several days to get back to where i was before.

We need to take control of our condition, and do what is best for us, whatever that may be... but it does take a little effort on our part to figure out what that is.

 

[Sam]

Hello Rhyl ~ I'm Sondra. I've been living with Fibro and Rheumatoid Arthritis (RA) for more than 12 years. I understand feeling like "I can't live like this anymore" all too well. It took me a long time to get the right balance of self care to get to a place where I can manage fairly well. I want to tell you it is possible to live a good life once you find your balance. My self care and treatment regime includes medication, daily stretching and mild exercise (especially breathing yoga style), walking when I can (if I'm not too tired), being outdoors daily (I live in the Florida Keys), a massage therapist well trained in Myofacial Release (working with the muscle cover and nerves versus deep muscle), daily heating pads and ice packs, a variety of lotions and gels for pain relief daily (Deep Blue Rub and Rapid Relief Gel), and Epsom Salt soaks when I just need it all to stop (one cup to a gallon of water). Bubbles and candles also help. For me, frequent prayer is also required (I'm Spiritual, not religious). I also structure my week so I don't have any commitments or appointments from Thursday thru Sunday to the best of my ability. As you can see, it's a lot. I simply refuse to surrender. I had to stop working about 10 years ago so I have time for all this. It broke my heart. I loved my work. Yet feeling like I CAN live with this makes it all worthwhile. Sure, there are moments when it all just seems like too much ~ One Day with No Pain would be Fabulous!! I'll have to settle for The Best I Can Do. You can do this. Learn all you can and begin your battle. Welcome to the world of Fibro Warriors.

 

[sunkacola]

@Sam
Thank you for such a helpful response to Rhyl. You are doing what I always recommend to people to do, and hearing it from another person who is successfully managing fibromyalgia and having a life is very helpful to everyone here.

Welcome to the forum, and I hope that you continue to be a part of this virtual community. Maybe we can offer help and support to you as well.

 

[Rhyl]

Thanks to all who responded. One of the reasons I don't post much--anywhere, actually--is because I sometimes feel like everybody thinks I'm not doing enough.

when you reach the point of feeling you can't live like this any more is the time to take matters into your own hands as much as you can and dedicate yourself to doing all of the things you can possibly do to allow your body to feel better.

As I see it, I *am* doing as much as I can. Here's the thing: everything I do/need to do is affected by my depression. I am extremely low energy, have trouble doing anything with any consistency, and my motivation is low because nothing seems to really make any difference.

And yes, I do and have done all sorts of things to help with the depression. Therapy, mindfulness (the only thing that helps even a little), medication, diet, exercise (does not help at all), etc.

Dietary changes can have a HUGE impact on how we feel..

Some of the dietary changes I've made in the past helped in a limited way physically, but not with pain.

I know there are a whole host of things I should try, but again...I'm dealing with pretty significant depression (and some other stuff), and even though I've tried, I can't maintain anything with any consistency. I don't know how to manage that latter.

but it does take a little effort on our part to figure out what that is.

This feels dismissive to me. Are you saying that I'm not putting in any effort? Because I actually am.

I simply refuse to surrender. I had to stop working about 10 years ago so I have time for all this. It broke my heart. I loved my work. Yet feeling like I CAN live with this makes it all worthwhile.

I haven't surrendered. But I can't quit work. Aside from the financial implications, work--volunteer and/or paid--is what gets me up in the morning. I've been on extended leave before, and again, aside from the huge financial burden, the depression became significantly worse because I didn't have a structure and nothing seemed to matter.

Again, thanks everyone. I'm not coming back. Nobody anywhere sees or hears how hard I've been trying, and that just makes me feel worse.

 

[JayCS]

Again, thanks everyone. I'm not coming back. Nobody anywhere sees or hears how hard I've been trying, and that just makes me feel worse.

Sorry to hear you feel this way, Rhyl, and I hope you some time re-consider it:
You've explained how hard you've been trying and I think your message has now come across. It'd be a pity to leave it there for both sides.
I think/hope what was said "to you" was meant as encouragement, coming from people who've been there and still are there, just like you.
I do very much empathize tho that "advice" is something we need to ask for and sometimes it seems necessary to ask NOT to.
"Advice" can never know exactly what our situation is, but if we are asking for it, both sides are hopefully taking that into account.
In this case we are in the moan and vent" forum/category, so I try to remember here more than in other places not to come with advice, which is why I hadn't answered here up to now, and also am not "advising" anything now.
Generally, I'm often caught up in wanting to offer help, ideas and experiences, but knowing that may well catch others on the wrong foot.
I remember as a teen crying in a wonderful East European music / dance performance which I knew was brilliant and demonstrated so much joy: It made me feel worse, I wasn't up to it, caught up in depression. Once I'd managed to drag myself out, dance was wonderful again....

 

[cookiebaker]

This feels dismissive to me. Are you saying that I'm not putting in any effort? Because I actually am.

I am not trying to be dismissive at all, and I am sorry if that is how the comment made you feel.

I do understand how much depression can take over, it is something that I have to cope with as well. Pain and depression are a bit of a vicious cycle, one feeds the other and it can be very hard to stop the spiral.
Depression can often have physical symptoms as well as the emotional ones. It is all intertwined, much like the tree i use for my avatar.
I strongly encourage you to get some help with/for the depression first and foremost. Gaining a bit of control over that will go a long ways towards helping you in other areas.

You are cared about, you are worthwhile, and you are welcome here.

 

[sunkacola]

What @Rhyl says resonates with me. When I talk about doing all you can, I am not referring to doing things to relieve depression, but to relieve physical symptoms of fibromyalgia.
If anyone is interested in my efforts and experience with depression, my post titled "Depression" is here to read, and in it I explain that I tried dozens of things over many years and while many of them were worth doing, none of them ever relieved my chronic depression. I also fully understand how hard it is to motivate oneself while depressed.....I experience that on a very regular basis. it can be hard..... and it can be impossible.

I wouldn't want anyone to think that I did not understand that, or that I thought someone who was depressed was "not doing enough". That is a feeling I know all too well, and wouldn't put onto someone else.

Don't know if Rhyl will see this, but if not, then just stating it for the record.

When it comes to physical relief from symptoms of fibro, there are things one can do even while depressed, but it shouldn't ever be made into something that a person beats himself up for not doing, or that anyone else criticizes someone for not doing. You just do what you can do, when you can do it, and that has to be enough for that day.

 

[QueenYPea]

I'm new here and I just thought I'd add a thought or 2.

I'm wondering if Rhyl needed to just offload and be validated that this illness is really crap and no matter what we try or how much effort we put in theres a huge amount of us for whom those efforts have no effect. And its demoralising and really so sad.

I have a huge fatigue element to my fibromyalgia yet im also a very busy person who loves to give time to causes etc. But its such a sacrifice.... yet in the other hand these things bring joy to my life and stabilise my mental health. So its like being caught. between a rock and a hard place.

I think everyones responses were really loving and well thought through in terms of ideas and advice. Im just wondering whether Rhyl wasn't actually asking for advice and maybe just for someone to listen.

If thats true I hope she stays and doesn't leave. If you are still here I'm just sending you a hug for being vulnerable and honest with us and just want to say i've felt like this too this week. You are amazing for all you doin your community and im sure you are so valued for it!
I felt less alone reading your post today, thank you Gentle hugs xx

 

[hope23]

Hi @Rhyl
I truly hope you get to read this. I have now been a part of this forum(regularly participating) for over a year. I have been sick for over 7 years and have tried everything under the sun available to me to try and manage my fibro and cfs. I am so sorry you felt judged, unheard, and as though being told you werent doing enough when i first joined the forum i at times also felt unheard or that my approach was "wrong". I believe with all my heart that that was not intended in my case or yours, however it does not change the feelings that resulted.

I would like to tell you a bit about my own journey, I have been judged, accused of drug seeking and made to feel i wasnt doing enough or gave up because i didnt find a magic fix. I have tried every alternative approach as well as diet and none of it helped me at all. The only thing that has helped me is medication. The reason i am sharing this is that its important to remember that you are the expert on your body, and you will find the things that work for and help you. And what works for me may not work for you and so on. I was engaged and my fiance left and wanted out of the relationship as my health was just all too much, too hard, and he felt 'id given up trying to get better'. When your illness is 'invisible' i personally believe this often leads to the effortd you are putting in and the things you are trying or have tried become 'invisible' too.

The topic of medication is not a popular one, natural means of treating your fibro are advocated for, which personally felt like judgement(which i believe was completely unintended) when i first became more active in the group. I think for us fibromites we know how hard this life is and when we find something that works for us we want to share it with those who have the same condition and/or are struggling.

I want to say this, you are valued, and the fact you give your time to those causes you feel important is an incredible achievement living in the pain(physical and mental) that i know you do.

This forum can be an amazing place of support but can also at times feel like a lot of unsolicited advice, as though you are a broken toy to be fixed. Again i truly believe the advice given comes from a place of caring and that shared struggle we all live with.

This life is not an easy one no matter what way you slice it. I do so hope you continue as a part of this group as it can be helpful but it's also a great place to connect with people who have personally experienced what you are going through(the pain and depression).

I am hear to chat any time you need it, if you want advice or suggestions then i will do my best, but if you just want an ear to listen i can be that too. As someone who's approach to my fibro and cfs differs from a large number of forum members, i feel and understand the feeling of judgement and being unheard or made to feel 'i didnt try hard enough' or 'i gave up' that you are feeling. For me those feelings stemmed from my personal experiences on my health journey and how i was treated by those around me and the health professionals i had seen. These experiences coloured the way i read and understood the responses i got when i first became more active on this forum.
I believe with all my heart that no one on this forum would intentionally want to make you feel that way as i(and i would say many of the forum members) know first hand how crappy it feels

I do so hope this reaches you