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Living With Fibromyalgia - Online Support Group

Alone and feeling scared this weekend

Newbie here - I joined about a 2 weeks ago. I was diagnosed with fibromyalgia (and PTSD) about 3 years ago. That’s three years of doctors refusing to accept the diagnosis, insurance challenges, major paycheque challenges, pain, fatigue, and now struggling to work full time. During this time there was also two deaths, which hit me hard: my mother and my ex-husband.

My ex-husband was my best friend. We were married VERY young and for only 2 years, but we had a daughter together, so we decided that we would still be a “family” even though we were divorced. Neither of us remarried, despite divorcing in 1984. Whenever I was in trouble, he would come running and do whatever he could to help. God, I miss him.

I just don’t have anybody like that anymore. And I’m scared right now. I feel really, really alone.

Right now, my biggest fear is money. NOBODY wants to talk about money, it’s just not done in polite society. But this illness has impacted my finances and I’m not sure what I’m going to do.

I’m not looking for financial advice. I’m just wondering if anybody else on the board is unmarried and doesn’t have a partner who will pick up the slack when things go downhill or even just tell you that everything is going to be OK in such a way that you believe them. When there is nobody who truly has your back, what do you do? How do you cope? What gets you through the night and into the next day?

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I am So Sorry you are going through this. Depending on your income you can go to the Dept of Human Services & see if you qualify for Food Stamps, they will also help you with lists of things available. If you are renting you may qualify for Rent Assistance. There are Food Pantries to go to. Depending on what size town you live in, there are Catholic Social Services (in big cities) or you can call churches to see if they have any ideas or ways to get the help you need. Help is there, all you have to do is ask. Love, Light & Peace. Maggi.

Hi Luna02,
Thanks, I live in Canada so it’s a different system. However, I am aware that there are services out there, which is why I said I’m not looking for financial advice. Luckily, I am not yet at the point where I need to worry about food.

Have a great memorial day weekend!

I know Luna was talking about some services regarding ‘essential needs’ ie Food and rent and you state I’m not at that point yet, which is great. But whilst you are asking the question ask yourself what things Can I put in place if the ‘worst case scenario’ plays out. For example insurances. I was lucky (in one way) that I had an disability income support policy as part of my superannuation and when the proverbial really hit the fan I had the money to survive. The first part of the policy covered my income temporarily for 6mths, but when the drs deemed I was unable to return to my employment I received the full insurance payout. Without such cover I’d be homeless right now.

Although you state you do not need any services here and now, and I hope, beg, pray you never do. Maybe it would be well worth investigating the 'What if…?" scenario, just to cover yourself. So you know what is available and the costs involved if you ever do need them.

Just an idea
Merl from the moderator Support Team

I’m very sorry for both your losses. I’m married but did have the alone feeling when my husband was deployed & having 2 toddlers to take care of. Unfortunately that feeling can happen even when people are right beside you. I found this site to help when I needed to vent, support, or just needed to talk. Also I got back into church & my faith to help me. We are here to listen.

I have felt alone and lonely even though I am married, receive disability payments, and generally have enough to get by on. Despite the support, I am always afraid that my benefits will be cut off for some reason. Also, most people who have not experienced chronic illness, especially an ‘invisible’ illness, don’t understand me, even when they try. So they might not be as willing to assist with money as if I had, say, a broken back. They may be judgmental about my financial situation. (“You sure don’t look sick”) With chronic illness I truly am more vulnerable. Fortunately I have these amazing online communities where I’m reminded that I’m not alone. Occasionally I meet a friend in my town who also has some form of chronic illness: those people are treasures to me. We find our own ways of having fun, even if its just going on a gentle walk.
I hope that you are comforted and guided by understanding others. Best wishes!

The loneliness is an awful feeling and for most of us it occurs when we need it least. But I find this site such a help and I hope you keep writing here. Honestly knowing other people are in a similar position helps me. So take care and I look forward to hearing more from you.

Hey there,
I’m glad you joined this group; and I hope you are feeling less alone this morning… If nothing else, know I’m here for you, and truly in the same boat.
I too am divorced, no children( well my dogs and kitty, all rescued me-or I them- not sure which anymore!) and for several years now worry and wonder about whose got MY back. How do I stay afloat financially… who can I turn to on days where a flare up knocks me flat? How will I cover the bills if I can’t work?
And that’s just the tip of the iceberg of the never ending monologue in my head.
Having fibromyalgia, along with anxiety, arthritis, thyroid issues, wicked allergies and multiple chronic injuries from a bad car accident some years ago has LITERALLY brought me to my knees. I think maybe that’s where you’re at now too. And if so, all I can tell you is I had to fight my own mind for the courage to take this crappy hand of cards one day at a time, and live MUCH more simply. I’ve shed a great many material possessions and always think twice about what I need vs. what I want. I am in the final phase of the Social Security disability process - years long process I’d suggest you begin now. I am constantly planning and preparing for a safe future for my senior years, because who else will? I’ve learned to meditate and do my best to practice daily, to keep the panic attacks down and shut my worried brain up for a little while. I’ve taught myself how to grow my own food, how to raise hens, how to use tools of survival, JUST to prove to my whining worrying ego that I’ll not end up in a gutter starved to death.
In my best moments, I can look back and see that I am in many ways lighter and less encumbered by “stuff” and so many things that mattered SO MUCH just don’t anymore; and I find that very freeing. I got rid of debt, credit cards, revolving accounts, and got over feeling “less than” other people because of my bank balance. It’s all just stuff. I eat Whole Foods, I walk everyday to keep the pain down, and find real joy in peaceful moments with my dogs; in nature, or in a good book. But by far the most important thing I do each day is give thanks for what I DO HAVE, and what I CAN contribute to this world. There are a million little things you do each day that makes the world a better place. When you shift your focus this way, a new strength and self reliance grows. It takes time to develop these habits. It’s a fight- but we’re warriors. I used to start my day in fear-“how the heck will I get through today?” Now I assess how I am feeling and use that information to define what I CAN do that day. I faithfully take what meds and supplements I know to have enough benefit to trump any side effects, I eat foods that I know to help and avoid those that make me feel worse( sugar… bad) and I tailor my day around how I feel.
You can do this too. Everyone here is rooting for you. You’ve lost loved ones, and the grief and loneliness that comes with that feels insurmountable, so it’s important to let yourself off the hook for a while, know that time heals all wounds(AND wounds all heels!:grimacing:) and be easy on yourself. Come here and get things off your chest. It will help remind you you are NOT fighting this battle alone. It doesn’t mean you won’t have bad days. But it does mean that you’ll begin to handle them- and simultaneously let them go- much better.
Sometimes I think there is a real gift; a true blessing in the realization that no one is responsible for our happiness( happiness includes health wellness security serenity strength) but ourselves. Having a chronic, misunderstood illness and a ridiculous myriad of pain gave me that gift. It wouldn’t matter if I had a full on entourage of support people around me… it’s on me to choose to thrive. That’s true for every human being on Earth, most just are never forced to recognize it, and spend their entire lives trying to fill a bottomless hole with people and stuff.
My goodness, I’ve rattled on and on.
I’d love to hear back about how you’re doing today sweetie.
Lol, I sound strong today but I’ve just 2 days ago emerged from a 4 day flare up that had me dragging myself thru life in a thick fog. What makes a difference these days is that I am able to remind myself it WILL pass.
All the best to you❤️

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I was diagnosed over 25 years ago. I can tell you that there will be more good days than bad. I started keeping a journal years and years ago and when I am having a particularly hard day I tend to go back and look and see that I have had these hard days before, and I survived. But you are right, It is so hard feeling alone - I am married, but often feel alone. I can’t talk to him about this illness we all share. He gets frustrated because he can’t “fix” it and he is a fixer - a mechanic by trade. My sister, who passed away 5 years ago was my go to person and now that she is gone I often come here or other Fibro sites to remind myself that I am not alone. As time goes on, you get to really know your body, you figure out what you can and can’t do, what seems to trigger an attack. For me its too much processed foods, extreme weather swings, stress, a bad virus, alcohol and lack of sleep. And sometimes you just don’t understand why you feel so crappy. I hope today is a better day for you.

It is tough to face anything to do with chronic illness, and when your support is no longer there for you it is rather scary. Actually it sounds like you lost two of your main supports. Losing that makes the fibro act up more. I do live alone and while I have family near, they have issues of their own and are not much support. I would say first if your are having trouble sleeping, talk to your doctor. The way I get through my nights is coloring, so that could be any craft you like; and I play computer games. Both of these get my mind off myself. I am sorry for your loss, especially since it has been a double whammy. I am now retired and live on low monthly income. The best I can say is to budget. Know what your bills are and what you spend on such things as food, meds, car (if you have one). Just know we support you, and while you may be physically alone, you have support from us.

Hi. Fibromyalgia is a very lonely illness. It there a fibro support or chronic illness group nearby. I hope you find a good friend to talk to. I agree with the advice above. 1. Work on your financial support for your future so you feel secure. 2. Find something that occupies your mind when you feel alone or a flare hits and you feel unwell. I use puzzles, reading and the internet to keep me from dwelling on my problems. 3. Build your self confidence so that even though you have fibro and you’re alone, you know you can deal with things and take care of yourself.
I wish you the best, happy days and good health.

Thanks everyone, for the comments and suggestions. I really appreciate it (and I’ll reply directly to some of you). I haven’t been on the boards because I’ve been in such a dark place because, on top of all my other problems, I somehow managed to get Whooping Cough. I didn’t even think it existed anymore, but went out with small pox. I had my doctor check my immunization book and it seems I had a booster for measles and mumps – but not the booster shot that included Whooping Cough. I must have caught it in one of the waiting rooms of the doctor’s office. I have discovered a new level of pain thanks to violent coughing fits. I’m not sure I’m 100% out of this funk yet – having to take more unpaid sick leave didn’t help. But I’m trying to get myself organized so that I’m on-top of housework and going to the office.

Financially, I need to sit down, face facts and make a plan…but I haven’t been brave enough to do it yet.

Merl,
I have disability insurance however I had two problems with it: initially I couldn’t get it started because it’s through my employer and the pay people are so disorganized, I sometimes don’t even get a paycheque (I work for the Cdn. government and they are using system called Phoenix, which if you google you’ll see it is a nightmare). And after 2 years, my doctor decided quite randomly that I was well enough to work full-time, so my disability insurance ended. I would have to convince the doctor AND start the process again if I were to be off work. And it’s still hit-or-miss if I get paid.

Basically, I planned for emergencies and the Phoenix system circumvented them.
It is like I looked both ways before I crossed the street and then got hit by a plane.

CDFRANCE26 - I cannot imagine what it is like to have 2 toddler and fibro!! OMG, I feel so bad for you and suddenly I am so much more appreciative that I have only myself and my adult daughter (who is disabled) to worry about!

Olddognewtricks - I think you hit the nail on the head what you said “With chronic illness I truly am more vulnerable.” Yes. We are. That sums it up! (And I agree that friends are more judgmental – my friend who battled cancer received so much support and I just get sad looks.)

Jojo41 - Thanks. I think this site helps too, and I appreciate that you left me a note!

N8trluvr - Great advice. I hold onto my stuff like a safety blanket, though clearly it doesn’t keep me very safe. I like that instead of starting your day with “how the heck will I get through today”, you now assess your feelings and think “what CAN I do today”. I’ve started bullet-journalling to try to get through this type of process. And no, you were not rattling on. All of it was wise and kind words that helped me. :slight_smile:

NCGAL63 - Your poor husband, if only he could peek under your hood and figure out the problem with your wiring, he could probably fix your fibro! I know this disease can also be hard on the people we live with. My adult daughter moved back home a few years ago and since she isn’t functioning and relied on me, she’s now scared about the future too. I’m not the solid foundation for her anymore. It’s a process for everyone. Also, thanks for mentioning triggers. I hadn’t really thought about what might trigger, but I should probably start tracking some habits to see if I can figure it out.

Ruth1 - I have some colouring books but hadn’t used them yet! But I opened one a few nights ago and coloured … and thought of you.

Mardi - Hmmm, build self-confidence? You’d think I’d have it after everything I’ve endured, but yet … no. It’s definately food for thought. Happy days and good health to you too!