Going under for the 3rd time - need someone to talk to

Not sure any of this will make sense but feel I have to talk to someone and since I don’t have anyone in-person, this was the best place I could think of.

This may get long, will probably be ramble-y and if it was pen and paper, would definitely be tear stained. Sorry in advance.

I don’t post often, a long-ingrained teaching of “you don’t talk about personal or family matters outside the family” thing. But like I said, I got to talk to someone and family isn’t it. Some just don’t understand, some just simply don’t care.

I guess I am just tired . . . tired of the pain that never goes away, tired of the fatigue that is all consuming, tired of the depression and anxiety that tags along with the pain and fatigue. I’m tired of the struggle.

I am tired of people thinking they know my situation better than I and freely telling me just what I need to do to “fix” my problem. I am tired of complete strangers telling me if I would just lose some weight, or would exercise more, I wouldn’t have the trouble I do. I am tired of being told I am lazy, playing the system (even though I am not receiving any help from the system), looking for sympathy, etc. Even friends and family chime in at times.

I’m tired of people asking how I am doing, but then brushing me off if I say anything other than “fine” “ok” or “not bad.” If you don’t want to know how I am doing, don’t ask! I realize some use such kind of like a “hi,” but when you have just seen them spend several minutes listening to someone else, after having asked them the same question, it hurts.

I’m tired of struggling to get the doctor to listen, REALLY listen to me. Not just hear what he wants to hear. Not see me as some kind of financial picture - Oh, no insurance, no money; this is a waste of my time. I’m tired of begging for help, only to get a condescending “it’s just severe arthritis, learn to live with it.” Learn to live with it . . . I’ve been doing that for over 12 years. It’s getting harder and harder to “live with it”; what happens when I can’t live with it any longer?

I am tired of easy answers that don’t really answer. Severe arthritis is an easy answer but it doesn’t explain the muscle pain, the spots that can be so tender that just barely touching them brings tears, the times when my skin is so sensitive that even my cat brushing against me hurts. Severe arthritis doesn’t explain the brain fog, the inability to focus and concentrate or the constant fatigue that never goes away. Seldom do I have a day that I don’t take at least one nap, some days it is 2 or even 3.

I am tired of trying to stretch pennies. The savings is gone now, there wasn’t a great deal there to begin with. I have virtually no income. I tried getting some computer work that I could do from home and it fell through. I’m trying to get some income coming in from resale, but that will take time. In the meantime, my phone has been disconnected, my other utilities are in danger of such, the property taxes and car tags are late, and until I can pay the doctor bill I have and have the next visit’s fee in hand, I can’t see him either. The only thing I am not behind on is the car insurance (I still have 3 months before it is due), but somehow that’s little consolation since the computer is going out on my car and I can’t rely on it. Rather difficult to go anywhere when you have to get someone to jump it just to get it started and then you can’t turn it off or you can’t start it again without another jump. And don’t plan on going to far because you never know when it will give out completely and leave you stranded. There is no money to repair it, let alone replace it. And being 25 miles from the nearest town, means no alternative transportation.

No, I can’t work at the local grocery, convenience store, farm store, restaurant, etc. No, I can’t work in dietary or housekeeping at the hospital or nursing home, either. Nor can I do housecleaning (most days I struggle just to get my own done). I can’t do the lifting, bending, standing, etc. that they require; nor can I keep my focus - brain fog is NOT an asset when working. I can’t stay awake for an entire shift, and if I do manage, by some miracle to do so, I am not safe to drive home. At least not if I want to arrive home without blacking out most of the drive home or worse. I’ve done that more than I care to - very scary to realize you are home in your driveway; and you have no recollection of getting from work to home. Even more disheartening to drive to work, realize you don’t have memory of doing so - and you still have your shift to work.

I am just tired.

Hey strugglingKs,
You ramble as much as you need and don’t be apologising . We all need to get things out and what better place to do so than here, where there are people who do understand.

From my experience family can be some of the hardest people to get to comprehend some of the realities of having a rare condition. Often they have a fixed idea of illness, ie you get sick, you rest, you recuperate and life goes on and when that is not the case they often tend to point to psychological reasons or the typical ‘patient blaming’. As if we choose to be in this situation. Who on earth would ever choose this? Not me that’s for damn sure.

Now, I must say here, I’m in Australia, so how the services work here compared to there is very different, but it sounds to me like you really could use some assistance.
I have found a community service in the U.S. that you may find of assistance. They are a national service but they maybe able to link you in with specific services within your local area. They are the National Fibromyalgia Association. I am unsure if their service is appropriate, that will be up to you to establish, but it gives you a place to start to try and get what you may need.

Hope it helps
Merl from the Moderator Support Team

Dear StrugglinginKs,
I also suffer from arthritis and fibromyalgia (with a few other painful conditions…).
You are right - “Well” people do not understand that your body has a limited supply of energy, and, some days, no energy at all. Combine that fact, with severe pain, all throughout your body, and it is pretty much a miracle that we can get through the day. People on this site DO understand. If you need to “ramble” daily here, you should do it! You can speak from your heart, without fear, knowing that everyone here can feel your words, and you touch a place deep in our hearts.
Merl had excellent advice.
I will pray for you, that you will not lose hope and will find the answers that you need.

Thank you! Today is going a bit better, at least as far as my car is concerned . . . my son and his dad (my ex) looked at it today and found that while the alternator was “working” it wasn’t always charging. They lost me in the explanation but I trust them. And since our son and daughter depend on me to get them to town (their dad lives out of state and my son and daughter are part of an old order horse and buggy group here) my son told me his dad footed the cost of the alternator. Such a HUGE blessing! So it looks like at least the car situation has improved - YEA.

I will check out the National Fibromyalgia Association, thank you. I know when I was looking into assistance before I kept coming up against brick walls - if my children still lived at home I could get food stamps, insurance, and maybe even some cash assistance (if I wanted to jump through all the return to work hurdles they throw at you). But since I no longer have kids at home, I don’t qualify anymore. I can buy insurance through the state (if I could afford it) but I don’t qualify for the state insurance.

I will check with the National Fibromyalgia Association though, maybe they have some ideas I haven’t tried yet.

For now though I think I am going to see about some supper and then I am going to crash.

Hey, there, StrugglinginKs!
What a blessing that your ex is helping with the car! I’m glad that you have more peace in that area.
Wishing you the best possible day ahead!

When it rains, it pours - and I think it’s the monsoon season!

This week has basically been a big flare up. It started Monday, and while it has eased slightly at times, it has not been a good week pain or fatigue wise.

Then to finish the week with a “bang” . . . I got the alternator replaced last weekend and now this weekend the starter appears to have gone out. At least I was at home when it gave up completely - I had been in town earlier in the day. I am seriously beginning to think my car is possessed by a mischievous little gremlin.

Some times I wish I could crawl in a hole somewhere and just have the world disappear. :cry:

Sending you a big hug & a prayer. I don’t know if this is something you would want to do, but is there a church in town with folks that could help with your car? Maybe if you reached out to the minister, and asked if they have someone that could look at it for you, as you don’t have the finances to take it to a mechanic, they would help. Or, can you contact your ex again? I realize he doesn’t live close by, but maybe he would have an idea to help.
I’m so sorry for the pain you are experiencing. I’m finally having a better day today, after 3 weeks of flares. You will have a better day coming. Just hang in there!!!

Hi StrugglinginKs! I just read your story. You have been through so much. Hugs to you!:hugs: I want you to know you are not alone. Have you considered going on disability? Disability does not mean you are lazy or just “using” the system. It is there for a reason. Just for a moment, I’m going to put that aside and tell you about other types of help available. If you live in the USA, you can call all your utility companies to see if you qualify for financial help. If not, they may be willing to reduce your bills for “that month.” If you have medical bills, talk to the business office. They will help you by setting up a monthly payment plan. You may also qualify to have your bill paid in full. I learned this year that medical bills are negotiable. Sounds crazy. Right? I have reduced my medical bills, this year, by THOUSANDS of dollars. It’s amazing what is negotiable. The worst thing anyone can tell you is NO. Many churches have benevolence programs to help with bills. I know this does not take away the physical and emotional pain you are enduring but it might help a little. You deserve love, respect, kindness and care. You deserve to be believed! I believe you. We believe you. We will help you get through this. We all need each other because we hurt in the inside so much but have nothing on the outside to show our wounds. I’ll keep thinking of more resources available to you. :purple_heart::green_heart:


StrugglinginKs, we haven’t heard from you in a bit. How are things with you now? We do worry about our friends, so drop a quick line if you can.

Seenie from Modsupport

That is SUCH a common problem with many rare diseases and conditions! More people get this than you know, but you don’t know who they are because they have nothing on the outside …

Seenie from Admin

Seenie & Freedom,
You two are blowing my mind! I think that is what is so special about this community. We all suffer with pain that no one sees. We can’t “see” each other physically, on this site, but we bond through experiencing the same type of suffering and the reality that, to others, we “look” fine. We can share freely because, finally, we are fully understood, which brings true compassion. Sometimes, just knowing this helps me more than all of the advice I can get on how to combat this awful condition.

Dear AussieMom just reading your comment is really encouraging. To be able to read that others is suffering in the same way and can understand what I am going through has really helped me. I do get nasty remarks from folk saying as I look OK there cannot be anything wrong with me. If only they knew!

I agree, Rosebud74! The pain, anxiety, depression, etc., get to be too much at times. Reading posts here, and seeing that others can relate, helps me to release those pent up feelings.
My hubby’s sister runs a cleaning company and is always energetic and doing things around her house. Once, on a visit, we were talking about my fibro and arthritis issues, & she commented, “Yeah, I have all that sh*t,” which made me feel like she thought I should be energetic, just like her and, to me, it belittled my pain and feelings. I have to conserve my energy, as I work full time from home, and that often takes everything I have for the day. I used to love to cook dinner, but now I rarely have the energy, and, if I decide to do a chore around the house that could take over an hour, the next day I’m hurting like crazy. I never know when to stop, so that my body won’t punish me, but I’m trying to learn. On weekends, I have to sleep most of the day on Saturday, b/c I’m worn out from the week. Sometimes I’m in bed most of the weekend. It can be depressing, to say the least… And, I’m sure hubby gets tired of it.
We can only do what our body will allow for that day if we want to stay as well as possible.