Hi,
Yesterday I painstakingly wrote a very detailed post about my challenges. I guess it did not get posted so I'm just testing this out now.
I'm a single mom, with a child at home and I basically have not made any new friends since my fibro. It is also extremely challenging to make playdates for him & support him to have friends. The lonliness wears at me. . .
Hi SeattleMama and welcome!
Oh my goodness, I can only imagine how hard it must be to have a young child and fibro, all at once. What a tall order! I think you might be able to get some helpful tips from other moms on here as to how they cope with this. I can't say because mine came on when my son was grown.
As far as your loneliness, start out by coming on here. There are many nice people with a lot of helpful ideas and sympathetic ears. I realize it's not the same as meeting people in person, but it's a great start plus a great way to find out more about fibro. You'll learn that you're not alone in it - your symptoms are our symptoms. And we believe you because we KNOW what you're saying is real.
So please, come here again. Read and write, if you wish. But know that you're not alone!
Hugs!!!
Petunia
Hi Seattlemama, I’m so sorry your discussion did not go through, that issue is being looked at… I’m glad you tried again.
Being a single mom is the hardest thing in the world & dealing with fibro on top of that has got to be more challenging than ever, I can relate to both… Only my daughter is grown and my son (19) thinks he’s grown, so although I don’t have young children, teenagers can make you really crazy !!!
I do know that lonely feeling… You have to take time for your self, anything to combat the stress.
It’s especially hard if he is an only child, because you constantly feel like you have to entertain them, set up play dates and provide activities for them… Ah do I remember that !!! My kids are 10 years apart so it was like raising two, only children … very hard !
It goes by so fast and we can only try our best… Just love him and he will be ok !
Hugs & blessings
dee
Seattle?! Oh my goodness I used to live in Bremerton where my son was born. That was 35 years ago. I couldnt cope with the weather. They didnt have a name for it back then but I have SAD. So I can relate to how youre feeling. I had my newborn and an 20 mo old. I think too I had fibro even back then but no one knew anything about it. So our weather here in Missouri today is a typical day in the NW and I feel rotten. It's so frustrating to have my life dictated by the weather! I had a sleep study done about 2 weeks ago to see if I have narcolepsy. I dont. I HAVE FIBROMYALGIA! Im single too but I only have to take care of myself. I was divorced in '08. My ex got tired of living witha sick, depressed woman so he pursued another woman. I am doing better about that emotionally but I too get very lonely and soothe myself with carbs and shopping online. Not a good thing for a diabetic but perhaps Im trying to self destruct. I try to accept each day as it comes but Im not so good at it. I feel like Im on a roller coaster physically and emotionally. I get tired of living this way. Ive only been with this support group about a week and I thank God for it because noone can understand if they dont have this illness. Please keep messaging. I need you! Sue
I had a busy (but good, all things considered, lol, day). (Also, I moved in with a friend in order to be able to spend money on treatment for my son's ld's rather than drain everything away in rent...anyway, there is a child his age living part time here- they've been friends since babies and) I am happy to report that I went shopping, got pizza (he's a picky eater which can be ..sigh...just hugely stressful to deal with) that he is HAPPILY eating. And then after shopping I went to buy board games (I was afraid the sensory overwhelm of the store would send me into a black hole of pain & brain fog, but I did really well! I asked an employee outside where to get the games & was able to get in & out quickly & easily. yay!! whew!) and they are playing "battleship". I also took some ibuprofen (hate taking it) to give myself a break today. So I'm still in pain & have a cough/infection as well, but today & in this moment I am rather at peace. I have been really depressed about my son playing computer games all day...I'm home(not)schooling (because of his ld's & the trauma of sending him to a school system that was abusive...longer story...) but for the moment he is happily playing (offline!) with a good friend. And I got to see a friend of mine (w/fibro)...we laughed about our "illness!!!" (you'd have to see the crazy faces she makes...I'm glad to at least have this one friend who I can laugh & cry with about the insanity of living w/pain) :) And actually I've seen her twice this week!! Because I moved to this house- she is just 5 minutes away so we have better luck catching each other in the short window of time when both of us are functional enough for a "playdate". Anyway...thank you everyone for responding. The empathy & sharing helped me. I sometimes lose track of things but plan to come back here & post & read more. Love & comfort to you all...
Hi seattlemama,
It sounds to me that you are adapting very well, you have a good sense of yourself and your son. You both have some good friends, home schooling can be an added challenge for friendships, so perhaps on a sunny Seattle day you could go to a nearby park, that may be a great place to get to know some new Moms and kids.
We are very glad to have you with us on the site, your sunny disposition and good humor will be a treasure to us all! Hope things continue to look up for you!
thanks. :) One of the biggest challenges I have (and grief) is ...because of my back, hip (and basically all over body pain) I can't just go out in the world. much. and the cold weather is literally painful for me. it makes me so stressed that i literally shut down. so we rarely just go to the park. plus...sigh...its very sad for me as well but my son (partly trauma...my pregnancy was terribly stressful and unfortunately he had to "marinate" in my terrified body for 9 months...I've studied trauma & yes, he has all the list of resulting symptoms...anxiety, highly sensitive/sensory overwhelm, bonding issues, doesn't tolerate changes in environment or routine, etc etc gah! etc) :)
I used to try going to the park to meet people...the other thing is the "seattle freeze" i have found it so disappointing many times (not always, sometimes I'm actually well enough to be friendly & enjoy myself and I've happened across some great people) but often it feels even more acutely lonely to go be around "normal" people and feel isolated & lonely.
i appreciate your idea (and the care behind it) though.
i'm up at 2:00 again...a year ago i got "remeron" from my dr. i've heard this is a really strong drug...i am super sensitive to all things so i probably should switch to something else. but at the time i was so grief-stricken, i was just curled up in a ball on the floor & had to do something to be able to parent. i've passed that acute grieving stage (i lost a dear loved one) but now...can't sleep without knocking myself out. i've had the pattern of waking at 2:00 on & off for the past 10 years.
i used to be better about pursuing natural remedies (i had "deep sleep" tincture but found that valerian wakes me up...i need another option) but just got so tired & weary. switched over to chemical/pharmaceutics. (i think/for me they have a cost, though. they are toxic and my body is already overwhelmed...anyhow)
may i take a moment here to wail about the health care... lol. i was also *thrilled* to find "community acupuncture" clinics opening around this area...you pay what you can ($15 minimum which is somewhat do-able for me) and can stay as long as you need. and go often- like 3 times a week- actually often enough to HELP. I would fall asleep during treatment usually -which was SO great. I'd get to hang out in a peaceful, nourishing space and feel rested & calmed when I woke. but i missed 3 appts in a row (I went by EVEN THOUGH it was really, really difficult (driving hurts me, the fog makes me get lost often, i was tired as always & etc) and paid for the appts) but next time the acupuncturist ...sheesh...first of all (i thought this was weird at the time but wasn't expecting an ambush so kept waiting) she served other people first, even though i had been waiting there longer. and i have to say here....if she understood, if anyone understood how brutal my life is - i had to leave my 10 yr old home alone in order to make these appts!!!!!!!!!!!!! i almost consider this child abuse but i have no support & sometimes just desperately need to get self-care. but it has such a high cost. it has been agonizing to ignore his needs at times in order to just survive. so, anyway..here i have dragged myself to acupuncture & it was actually nourishing for me (which is so rare!! to get any real relief!!) so i was feeling open/vulnerable and finally she came over to me and started whispering (there's supposed to be no talking in the room so everyone can rest during treatment) and started a VERY stressful conversation...basically taking me to task for having missed appts. Now, i do have a LOT of sympathy for everyone who has to deal with me. it is a pain for them too! i'm late a lot. i forget appointments. i'm in a lot of pain when i get there. etc. but...she was the care provider!!! she was basically trying to tell me that she didn't want to treat me. 1. she should have told me outside the room. 2. she could have told me instead of some weird passive aggressive "payback" of having me wait (stressing the whole time over my son at home & the minutes ticking by) till after the patients (who were scheduled *after* me!). 3. aaaaaaarrrrrrrgggggghhhhh! my brain just exploded & that's the best list i can do right now. i ended up walking out of the room & then walking out of the clinic and never going back. i was so upset. and -instead of getting help - i was already at my wit's end. i got an even more stressful encounter. :( :( :( the acupuncture helps with sleep (& pain, anxiety, etc) so this is why I'm ranting about it now. at 3am when i'm awake from back/hip pain, teeth grinding and being wired. sigh. i could use a lot of empathy over how mean & nasty health care providers can be. and incompetent. and etc. :)
Youve heard the term doctors "PRACTICE medicine" Some of them never get it right. I was in a car accident a year ago, knocked unconscious, broke my neck and as Im coming out of the MR machine the doctor yells at me, "that's what you get for not wearing your seat belt!" By this time I was conscious and yelled back at him "I always wear my seat belt!" IDIOTS! Sue
Hi Dee...
thank you for the sympathy about my post not going thru. i didn't think too much about it (figured i must have done it wrong in my brain fog) but it feels sweet to have a kind response!
and for your understanding as a parent...
Hi Sue,
first of all...wow, my sympathy and compassion to you having two babies so close together (I know it can be a joy as well, but kids so close is practically like having twins...and i have a big rant in general about how our culture extremely under-supports parents. most are shamed & made to feel like you are a better mom if you can buck up & do it all ...alone. i have recently had the good fortune to witness moms from another culture, who have the whole family helping (all meals done, all housecleaning, daily massage, etc) and it is just a world of difference! i hope you had a lot of good support at the time) ..adding on fibro...i'm so sorry! maybe that's all i can say).
i had fibro right away but it just seemed like the normal "omg i'm so tired & sore from having a newborn, i can barely stay on my feet & can't think straight"...it's just that it did not go away as he got older but got worse. by the time he was 2 i went to the dr for help...do no get me started on that one! he told me i needed to exersize (?!??! my baby was in the 100% and i was carrying him around all day & nursing around the clock..the last thing i needed was more physical work) and take prozac (sigh...this made me really really sick). anyway i also did a sleep study...lol, yes...
i also have a really hard time with the weather...9 months of the year i am barely alive...but i can't get out of this area without some huge support.
and...i could just cry at your situation of being left for another woman...i've gone through something similar recently and during the worst of the grief i literally could not stand up as the pain in my heart was agony in my whole body. that scenario is just so painful in so many ways.
i know that dynamics can go bad & it is stressful for everyone to live with a "sick" person...but you deserve loving treatment. at the LEAST if he was going to leave, he could have done it BEFORE going on to someone else. to have told you & given you time to process what was happening and grieve and let go.
i have also been told by many people that they are tired of how difficult i am/it is to be with me. SIGH! i do have empathy...i can imagine it from their side, but leaving that for the moment: it is so heartbreaking to be treated with hostility, cruelty or abandoned when i'm in need. the truth is that i am in so much pain that i need a lot of extra care.
and i also lament not being seen! (except by my friend w/fibro) it takes so much COURAGE, inner health, and there is a great BEAUTY in carrying on a life with all these pains & challenges. i hope as you read this you remember how precious you are and deserving of the best treatment by others (and yourself).
mho...5 years is actually not that long to recover from a loss like that. i know people who have taken that long or longer to grieve. (more like, the grief comes in cycles but they say gets better over time. i don't know about better...maybe i have more time in between but the grief is just as strong when it comes, for me).
if you are on a roller coaster & all that you described...i see that behavior as just trying to self-soothe. i do the same cycle, with different "crutches". it helped me to be reminded of the small steps...like, just eat a little protein first thing in the morning (this helps all day long w/sugar or carb cravings). at my better times i also would have a "snack basket" by my bed of nuts & healthy food that i could nibble on before i got out of bed. and stay there & rest til i had the energy to get up. a shower helps me sometimes. or a bath with salt & baking soda.
i have been watching a lot of netflix lately which is not my ideal...but i know for me shopping online is soothing. maybe you can switch to movies to take your mind off things (and not spend the money).
take care...
Youre so sweet. Yes, I have netflix Youre right. I have a ton of movies that I could rewatch. Thanks for the tip. I thought the wather was changing here but we're suppose to get an ice storm Th. ugh~ I went to the pulmonologist today. Waste of time. He just wants me to cut back on my sleep meds. Ill give it a try. I really think I need to see a therapist to get through this rough season with the grieving. But dont have a clue how to find a good one.
Thanks so much for writing back. How did your pregnancy and labor, delivery go? Apparently, trauma of one sort or another can cause fibro. I think 13 moves during my married life caused mine. And then he leaves me!
Do you live right in Seattle? It really is a neat city. I have fond memories of taking the ferry across the sound. Beautiful country WHEN THE SUN IS OUT!!! Youre in my prayers, gentle hugs for you. Sue
Hi Sue,
Thank you for asking about my pregnancy & delivery...I need so much empathy about this and there are not enough people brave enough to listen. lol. it was pretty bad. that is an understatement...
to back up for a sec though...i am no doctor, but it concerns me to hear he wants you to cut back on sleep meds. ummm....not getting enough sleep can be dangerous to your wellbeing! I am stuck on remeron right now, but as i said w/out it i can't sleep. :( i'd like to get the time & mojo to go visit local herbalist store & try some better self-care & non pharm methods. but for sure ...without my sleep meds i have just been in a terrible state physically & emotionally. i'm a total wreck without sleep...
after my (recent) loss of the man i was wildly in love with (it was awful...i still saw him almost daily & had to endure watching him with his new "family" including a baby...ouch! i want more babies but not sure i will ever be able to. so that was just icing on the cake...so painful...) i read books on betrayal. i can't afford (financially or having the energy to drive around to appts...my brain fog makes me miss most of them anyway. sigh) a therapist, but the books helped a lot. i checked out dozens from the library and read the ones that kept my interest. "shattered" was a good one for describing the severe emotional & psychological effects of betrayal and how to recover from it.
yeah...there are so many awful details to my birth story but its too much for me to get riled up about now. but i lost my home (which i had worked 2 jobs for years to get and saved & stressed), my family (they were shaming & angry that i got together w/an abusive addicted man), i had no friends, i lost my job, etc, etc....and the whole pregnancy i spent in a state of global high activation. there was no one to turn to, i had zero skills or awareness of how to deal with abuse then (since then, i have spent every chance i have learning about this & working on my mental/emotional/spiritual etc health...but all the help i've gotten in the last 10 years has not undone the damage done in that one year!)...and i was just terrified and in shock the whole time. (just to be clear- it was not physical abuse, but very severe psychological/emotional...very severe & crazy-making). anyway...i thought about many ways to "get out" of the situation but just could not ...i just could not make those choices. i had always, always wanted a baby (but never got a chance to bond to him or enjoy the thought of him coming during pregnancy) and after he was born, of course, i just loved him like nothing i've ever experienced! after many false "promises of change" there was finally a last, last straw and it has been no contact since my son was about 6 months old. there were just so many horrible events..i'm sure that (plus whatever i'd already endured/chemical exposures, etc) is why i have fibro.
and thanks...yes, the sun is actually starting to come out again! and i did get myself vitamin D (finally, i had stopped taking it for years & it was one of the many things on my to do list...) :) and i've been taking it.
gentle hugs back to you...
p.s...to find a good therapist...i have found 1. a lot of trial & error ...many of them just do not understand grief (or whatever) WITH the additional pain of fibromyalgia...it is a whole other level of hard. for example, lots of the the tips won't work for me. like..make sure you get out & walk! etc... 2. i always pay close attention to how i feel after talking to them...my intuition is usually right, if i take the time to tune in. 3. i've found good people by googling the specifics i need "grief, chronic illness" etc. i hope you do find someone good soon. i think extra help during grief is essential and i'm impressed with your courage...i was so down for awhile that i could barely tolerate talking to anyone. but staying home trapped with my own thoughts & energy was hard :) i also found a church grief group that was free & drop in (so i didn't have to worry about my brain fog making me miss an "appt" again) and that helped a lot. even though i don't attend the church, i just went to the grief support group. :)
p.p.s...i have to sleep soon, but hey! i didn't tell the best part! i worked my behind off during pregnancy educating myself about how to have the best birth possible. i knew it could be painful but i wanted to leave room for the possibility of ecstatic birth. it was the one thing i could influence! i went to hypnobirthing, i took home birth classes, i read about orgasmic birth, i packed my birth bag with everything (!) possible, and i chose my midwife carefully. actually, i even switched midwifes in my 9th month (amazing! took courage. most don't because the "nesting" instinct is to strong then. but i began to feel more & more anxious, realizing that she was not right for me. i interviewed at every birth center within driving distance...etc). and i had a BEAUTIFUL, pain-free labor! it was the most serene experience of my life. his dad was just flabbergasted...lol. i was swishing my hand back & forth in the water, in slow motion. i was telling him to calm down...lol. i have never felt anything to rival it. i was totally in my power and never more feminine. it was primal and life-changing. i felt the force of mother nature, and a profoundly strong gentleness and love. and i felt his head, little shoulders, body, legs, come out...everything. no tears. (no stitches anyway). i wish i had had the chance to birth again more times...sigh. i loved being a mother of a newborn. although i was trashed with exhaustion & ptsd, i loved getting up all night to nurse, loved taking care of him.
:)
Hi Mama! - I can only imagine what you are going through. I got Fibro when I was in my 40s, but by then, my kids were 15 and 13. I was always so grateful my kids were able to take care of themselves as far as getting ready for school, making their breakfast and helping me around the house when needed. It's a real challenge having a young child to raise when you have Fibro, isn't it? Are you new here? I joined in December - and I have made some wonderful friends!! Before I joined, I had been a little depressed. I have friends, but no one who knew what I was really going through. I felt a tremondous sense of isolation as well. This group helped me to feel wanted and cared for with my illnesses. There is really quite a difference in me now compared to the way I was just about 2 months ago. Stay with the group? I am pretty sure that you will feel better as times goes on - mentally and emotionally. There isn't anything you can't talk to us about. We are here to give support to each other and great advice as well. I have learned so much more about my illnesses too. Hugs!! Laurie
Hi Laurie,
thanks...i can only imagine how much easier it would be if i had kids old enough to be self-sufficient, and even more...who could actually help me. that is a mind boggling idea...
it is challenging in a thousand ways and i constantly am in grief & stress about it. there are so many losses and so many hard moments. and so little pleasure & comfort.
I am new... i have been on a fibro online group years ago (can't remember which) but found that being online was too draining with the brain fog & my then-toddler constantly begging for my attention & pulling my focus away. the isolation has been hard, but i feel more able to chat online now.
luckily (?! that seems an inappropriate word, lol) i met someone in the first couple years who also had fibro & was a single mom. but we cannot support each other completely...there is just SO much to rant about & SO much emotional support needed. we talk as we can but both have to pace ourselves. at least* i have had her over the years...but overall i still have felt an agonizing & debilitating amount of lonliness. the pain over the lonliness wears at me also & the stress of that hurts (my health) as well.
thank you for asking me to stay with the group. i feel welcomed & nourished here...
it is hard for people to not know what i'm going through...i hear you there. i interact with so many people who don't understand that it is taking me enormous* energy & courage to stand there & smile & talk about the WEATHER when i just want to double over or fall to the ground & weep from the pain of it all...
i have (sadly) had 10 years to live with this, and i do feel "better" in some ways mentally & emotionally. but sometimes it seems i don't feel better at all..when i go underneath my coping "mask"...i am still just shocked, horrified, devastated, etc to be sitting here with a chronic pain & exhaustion illness. it is SO not what i wanted out of life. but i have found the silver linings in it... i just still wish & hope for the day when i can wake up without PAIN. the pain is so tiresome...and...lol..it HURTS! I think a lot of ("well") people forget or don't understand that. sigh.
the ways i feel better though...are: i understand that i can affect my pain levels. i have tremendous compassion & tolerance for how little i can do. i have all the comforts i can manage to get for myself. i eat better. i use no more chemicals (or very rarely). my passion for health is still alive & well...and i have had the inspiration of necessity to spur me on to learn more about taking great care of myself. and i pass my knowledge along to others when asked...
Oh my gosh, Sue! I'd want to belt the doctor! What a terrible, terrible thing for him to say, especially as you were coming out of the MRI with a broken back!!! Just awful.
Maybe the tip of his tongue will get caught in a car door so he can no longer make such awful comments.