Struggling Alone

General
1

I just joined the group a few days ago not quite sure what day actually but that's my wonderful memory. I am hoping to meet new friends online here that I can reach out to when those days are unbearable. I was diagnosed 2yrs ago with symptoms a lot longer then that and its not been an easy road and continues to be hard.

I have to stay positive even if I don't want to when all I want to do is curl up in a little ball and cry. You see I have a daughter who is 13yrs old who has severe anxiety, depression and OCD. She never leaves the apartment until recently when I have finally found a program she attends to 2x a wk with 9 other kids who suffer with the same issues. I use to have a well payed job a marriage for 21yrs and two beautiful daughters who seemed very healthy and happy. Now I live alone with my youngest daughter, on long term disability through work and no friends to talk to as I think my friends just didn't know what to say to me on what I was going through.

What I need is new friends who understand and some hope that I truly will enjoy life again. My symptoms are severe most of the time whether its the extreme fatigue or the pain or both. Does anyone have any suggestions on how to combat the fatigue I have literally tried everything. I just have huge difficulties with maintaining my home if I could just get some energy it might be a little easier.

Thanks for listening

Trying to be strongmom

2

Hi Strongmom, WARM WELCOME !!! I’m so glad you have joined us :slight_smile:

Having to deal with pain & fatigue and take care of a child alone is so hard… My heart hurts for you, and all of us that have lost the life we once had. I can relate to that. I think we have all said "I just want my life back "
Learning how to enjoy life again is possible !!! . It’s a combination of so many things, it’s never just one thing, being apart of this community has helped so much !! Everyone understands, they get it !! There is so much advice, support, recommendations and ideas, not to mention great friendships :slight_smile:
I do understand exactly what you are saying… My fatigue is the worst… What has helped me is Savella, supplements like co-q10, I exercise daily, very slow at first, like 5 min on a recumbent bike 2 x day, health eating… Eliminating sugars, & complex carbs as well as wheat has helped a lot !!! Stress reduction, you have to find time to do something that you would enjoy & do it… For me it’s a trip to the barn , a short walk, or getting my nails done… Or a pedicure , massage or warm pool Therapy :slight_smile:
Hang in there… We are here for you :slight_smile:

I always recommend looking up old posted discussions, top left of the page hit all discussions, type in fatigue or related topics you want to read… There is so much info that can be helpful !!!

Hugs
& blessings
dee B

3

Hi Strongmom,

I'm really glad you joined the group, because a place like this can make a huge difference in our lives. There are so many of us deal with the same things-- the overall pain and lack of energy, making it almost impossible to care for our families, homes, or even ourselves. Add to that the strain that Fibromyalgia puts on relationships, and we end up feeling very alone with all of these responsibilities.

I've been here a year and a half, and I've made some lifelong friends -the kind that understand what I'm going through, and who encourage and support me during the rough patches. I have a lot of depression and anxiety issues, which makes it difficult to do much at all, let alone maintain outside friendships. I don't have any answers for finding energy or motivation, because I've been searching for some too. But I know I can always come here and find some tips to help me when I'm struggling, along with others who understand.

Hang in there, and know that we're always here for you!

Renie♥

4

Hello strongmom and welcome. We really do understand what you're going through, along with the tears of frustration. Fibro is really hard to handle at first because it kind of sneaks up on you and then whams you! And boy does it wham!

I strongly suggest that you keep coming here so you can relate to others who're going through exactly the same thing as you. The good news is that it is possible to build up a stronger self-esteem reserve that will help with dealing with fibro. For one thing, IT IS NOT YOUR FAULT you have it! It's a real illness, one that has recently been tracked to our hands, where we have too many nerves offering wrong signals to our blood flow, which causes less blood flow and thus pain. It is real!!!

As for handling fatigue - two things:

1. Pace yourself. You can't do what you did before you came down with fibro. Your pace has changed, so your day needs to reflect that. Take rest breaks, sit down, catch your breath. Ask your daughter for help with hard chores. You will need to revise your pace again, as time goes by, because you may have more symptoms.

I will include a good story that helps to explain what pacing means to us.

2. Get extra sleep. When you feel the fatigue coming on, sleep. It does help. Going while you're exhausted could cause you to fall or make bad judgments, like while driving. So extra sleep is vital to us.

I guarantee that if you do these two things, they will help some.

You also need to be gentle with yourself. You have an illness that affects your entire body, right down to your blood cells. That very sentence should be your mantra for awhile, until you believe it yourself. If you accept that your illness is widespread, I think it will help with some of your fatigue and frustration, as you won't be fighting the illness.

I wish you a better day tomorrow and more kindness to yourself.

Yours sincerely,

Petunia

Good explanation of our illness and why pacing is important: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

5

Wow you have no idea what it means to me to have someone that can help me with suggestions. Your right about accepting it and adjusting my life accordingly. I guess I am still working on that one however I have come to understand the illness much better then what I did 2yrs ago. I think what's hard is not having someone to lean on once in awhile I had another rough night last night. I do have much more symptoms now and I'm just trying to cope with it but thanks so much for your suggestions.

Your friend strong mom
Hugs

6

Thanks Dee , So far since I have joined I have had more support then I have had in the last 2yrs. Interesting regarding diet and supplements I was wondering about that I will certainly try anything to help reduce the pain and fatigue.

I am going to check out the other discussions as I have not done that yet unfortunately I was so fatigued I couldn't even handle reading on the PC any longer.

Thanks again

A new friend

Strongmom

7

Hi Kelly

I too had a difficult marriage which I didn't get into the specifics it would take too long. I know about the anxiety and depression with regards to my daughter and with me mildly though. My heart goes out to you I know its very difficult and I am happy to hear you met someone wonderful who understands you. Thank you for your kind words as it lifts my spirits to think I'm not totally alone.

Hugs strongmom

8

Thanks Renie,

Everyone has been so kind and offering the help is huge. I am glad to find someone who understands what I am going through and it does get lonely sometimes not to have a friend you can go out with on your good days isn't it. I will hang in there and the same to you as well.

Just knowing that I have somewhere to turn now is amazing

Take care

Strongmom

9

Hi Strong Mom,

I'm glad our suggestions are benefiting you. And it does take a while to get used to admitting to having fibro. But at least admitting it enough so that you can accept help and make accommodations for it really is a huge help and relief! The first time i used a motorized scooter in the grocery store was bittersweet because it meant I was no longer exhausted to the point of wanting to just drop but I also had to swallow my pride to do it. But it does get easier.

And pacing yourself if sooooooo important! When I first came here and read the Spoon Theory, I pretty much thought it had nothing to do with me but pretty soon I came to realize that like most others on here, my internal and external resources (emotional and physical resources) were limited and it made a good deal of sense to ration them and use them wisely. It's sort of like learning how to live on a budget, only you're budgeting your physical and emotional resources. And sometimes it is NO FUN to budget those resources (can I get to the Rolling Stones concert and back without falling to pieces - NOPE...can I get to my favorite little junk store and poke around - yeah) but it is what it is.

Rough nights are the pits. I really feel for you and hope you had someone around to help you through last night. You can even log on here and try to find someone who's up and who can chat with you. Not so hard to find, since most of us are reluctant night owls!

I'm glad you've found us. Now use our site as much as you need to - it WILL help.

Hugs,

Petunia

10

Thank you Petunia and Strong Mom for sharing what you all feel. I can't tell you how much it helps to hear your stories and thoughts. Like it really struck me just now when reading your response to Strong Mom, Petunia.....It takes a long time to get use to admitting to having fibro. I could just cry. I know I have it but just admitting it out loud is hard for me. No one outside of my close family and just a couple of people at work know. I somehow feel ashamed to admit to having it. I guess its like I just don't want others to know what I'm going through - I don't want to admit to the weakness. I spend all day trying to be strong at work but then I get home and Im dying. All my energy has been spent at work. My kids drive me crazy with their own issues and I have no energy to get anything done at home. Its so overwhelming all the time. It just so so so helps to know that I'm not alone. I only know one other person personally who has fibro and she seems to be managing it very well from what she says. The pain is just so intense and scary sometimes. It hurts emotionally. One of the other moderators said that she suffers from a lot of depression and anxiety. Is that one of the hallmarks of fibro or what!? Sometimes my anxiety feels worse than the physical pain. That's the thing about this condition (as with all chronic pain conditions I'm sure) - you hurt on the inside and the out. It's just a constant hell. ???? I'm sorry Strong Mom...I don't have any advice for trying to get more energy. I know for me I'm so much better in the morning. And, because of that I try to get everything done early so that I can just rest later on. Perhaps the answer lies in listening to your own bodily cues and doing what works for you.

11

I can totally understand where you are coming from, I find I can get overwhelmed very easily. I find it can be a simple thing like having to make a phone call. I usually have to talk myself into whatever I have to do. I have come a long ways to accepting my life with fibro as compared to 2yrs ago but I still find myself pushing myself too much thinking that I can beat it. That's usually when reality kicks in and I find myself in really bad shape , where my whole body feels like it has completely shut down. It will take time Hopeful as the one thing I am learning with this illness the quicker I accept I can't change the circumstances with living with it the better I will be. I am still learning some days I can accept better then other days. Right now I am going through severe pain at night with my knee and this now day 4 where I have to take a bath at 330am to get some sort of relief. Hang in there I am finding this site great support.