I am finding it incredibly difficult to keep up with my kids lately. One is almost 2 and the other is 5 months. It kills me that so often I am unable to do the things they want. My oldest is very active and physical.
I find myself looking for “quiet” activities for him on my bad days, but even the good ones aren’t so great! I’ve only been diagnosed with Fibro for about 3 weeks now and I’m really looking for balance between what I need to do for the kids and what I need to do for myself! Any suggestions are greatly appreciated.
hELLO i AM RE WRITING MY MESSAGE i LOST IT
Please review the 1oo list with you family and friends
hello FYI here is a list of most all of the things that happen and or effect me Category:Life
Fibro Symptoms List: 100 SYMTOMS OF FIBROMYALGIA
GENERAL __ Fatigue, made worse by physical exertion or stress __ Activity level decreased to less than 50% of pre-illness activity level __ Recurrent flu-like illness ___ Sore throat __ Hoarseness __ Tender or swollen lymph nodes (glands), especially in neck and underarms __ Shortness of breath (air hunger) with little or no exertion __ Frequent sighing __ Tremor or trembling __ Severe nasal allergies (new allergies or worsening of previous allergies) __ Cough __ Night sweats ___ Low-grade fevers __ Feeling cold often __ Feeling hot often __ Cold extremities (hands and feet) __ Low body temperature (below 97.6) __ Low blood pressure (below 110/70) __ Heart palpitations __ Dryness of eyes and/or mouth __ Increased thirst __ Symptoms worsened by temperature changes ___ Symptoms worsened by air travel __ Symptoms worsened by stress
PAIN __ Headache __ Tender points or trigger points __ Muscle pain __ Muscle twitching __ Muscle weakness __ Paralysis or severe weakness of an arm or leg __ Joint pain __ TMJ syndrome __ Chest pain
GENERAL NEUROLOGICAL __ Lightheadedness; feeling "spaced out" ___ Inability to think clearly ("brain fog") ___ Seizures __ Seizure-like episodes __ Syncope (fainting) or blackouts __ Sensation that you might faint __ Vertigo or dizziness __ Numbness or tingling sensations __ Tinnitus (ringing in one or both ears) __ Photophobia (sensitivity to light) __ Noise intolerance
EQUILIBRIUM/PERCEPTION __ Feeling spatially disoriented __ Dysequilibrium (balance difficulty) __ Staggering gait (clumsy walking; bumping into things) __ Dropping things frequently __ Difficulty judging distances (e.g. when driving; placing objects on surfaces) __ "Not quite seeing" what you are looking at
SLEEP __ Hypersomnia (excessive sleeping) __ Sleep disturbance: unrefreshing or non-restorative sleep __ Sleep disturbance: difficulty falling asleep __ Sleep disturbance: difficulty staying asleep (frequent awakenings) ___ Sleep disturbance: vivid or disturbing dreams or nightmares __ Altered sleep/wake schedule (alertness/energy best late at night)
MOOD/EMOTIONS __ Depressed mood __ Suicidal thoughts ___ Suicide attempts __ Feeling worthless __ Frequent crying __ Feeling helpless and/or hopeless __ Inability to enjoy previously enjoyed activities ___ Increased appetite __ Decreased appetite __ Anxiety or fear when there is no obvious cause __ Panic attacks __ Irritability; overreaction __ Rage attacks: anger outbursts with little or no cause __ Abrupt, unpredictable mood swings __ Phobias (irrational fears) __ Personality changes
EYES AND VISION __ Eye pain __ Changes in visual acuity (frequent changes in ability to see well) __ Difficulty with accommodation (switching focus from one thing to another) __ Blind spots in vision
SENSITIVITIES __ Sensitivities to medications (unable to tolerate "normal" dosage) __ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays) __ Sensitivities to foods __ Alcohol intolerance __ Alteration of taste, smell, and/or hearing
UROGENITAL __ Frequent urination __ Painful urination or bladder pain ___ Prostate pain ___ Impotence __ Endometriosis [Before my hysterectomy; it was severe.] __ Worsening of premenstrual syndrome (PMS) [Before my hysterectomy; it was severe.] __ Decreased libido (sex drive)
GASTROINTESTINAL __ Stomach ache; abdominal cramps __ Nausea __ Vomiting __ Esophageal reflux (heartburn) __ Frequent diarrhea __ Frequent constipation __ Bloating; intestinal gas __ Decreased appetite ___ Increased appetite __ Food cravings ___ Weight gain (____ lbs) __ Weight loss (_50+_ lbs)
SKIN __ Rashes or sores __ Eczema or psoriasis
OTHER ___ Hair loss ___ Mitral valve prolapse ___ Cancer __ Dental problems __ Periodontal (gum) disease __ Aphthous ulcers (canker sores)
COGNITIVE __ Difficulty with simple calculations (e.g., balancing checkbook) __ Word-finding difficulty __ Using the wrong word __ Difficulty expressing ideas in words ___ Difficulty moving your mouth to speak ___ Slowed speech __ Stuttering; stammering __ Impaired ability to concentrate __ Easily distracted during a task __ Difficulty paying attention __ Difficulty following a conversation when background noise is present __ Losing your train of thought in the middle of a sentence __ Difficulty putting tasks or things in proper sequence __ Losing track in the middle of a task (remembering what to do next) __ Difficulty with short-term memory __ Difficulty with long-term memory __ Forgetting how to do routine things __ Difficulty understanding what you read ___ Switching left and right __ Transposition (reversal) of numbers, words and/or letters when you speak __ Transposition (reversal) of numbers, words and/or letters when you write __ Difficulty remembering names of objects __ Difficulty remembering names of people ___ Difficulty recognizing faces __ Difficulty following simple written instructions __ Difficulty following complicated written instructions __ Difficulty following simple oral (spoken) instructions __ Difficulty following complicated oral (spoken) instructions __ Poor judgment __ Difficulty making decisions __ Difficulty integrating information (putting ideas together to form a complete picture or concept) __ Difficulty following directions while driving __ Becoming lost in familiar locations when driving __ Feeling too disoriented to drive
THE list is long and not only that it can be scurry
Best advice I can give you is to find support/ help, when the flare ups, SOME TIMES CALLED BAD DAYS ,come upon you
if you can't get family to help look for Public support. get time for your self . IT is very hard with children even harder with small ones.
search for help with the problems that hit you. out side help like<<< keep moving MODERATION some not to much of any one thing BUT DO SOMTHING KEEP= WALKING, MOVING WHEN YOU THINK YOU CAN;T,massages help some , water. pool /bath, shower.. JUST LEARNIG TO REALX> rest ehwn you need to.
as alway make sure the meds are fully review by you MAIN DOCTOR , going to many doctors does not help UNLESS ONE IS IN CONTROL IE MAIN DOCTOR THAT IS FIMULARE WITH FYBROMYELGIA
It is tough and especially when they are as young as two. I have one suggestion for the two year old. This helped me quite a bit on my low energy days. Take him/her to the playground where he/she can burn energy with other kids. You might meet other parents there you can set up play dates with. When my son was 2 1/2 years old I enrolled him in a variety of classes. I could just sit and relax with the other parents. He did gymnastics, dance and sports. He really was a ball of energy. I do not know if this is possible with an infant (depending on their nap schedule)- I encouraged my son to have alone time in the morning while I slept in a bit. I gave him some markers, paper, puzzles, blocks and books. I do not think that was such a bad thing because he learned how to build a tower of books as tall as him and now that he is 7 years old he can get himself ready for school with very little help from me. I do get up most of the days now but somedays are harder. I have read that children do need to learn to be alone and not expect their parent's constant attention. I had a hard time when he was an infant. Does your two year old have nap time? Can you coincide it with the 5 month old's nap? I hope these suggestions might help a little
Can you nap or just lie down with a book
hi so sorry that u r having a tough time. i know as a mom u want to do so much but the fibro makes it so hard. i see that u have only been diaginosed 3 weeks ago so u need to find out what meds will work 4 u and that is hard with every fibro patient cause we all suffer from different things and we all respond different meds. if u r not nursing than your dr can give u any med he or she thinks will help if u r nursing u may want to consider stopping because a lot of the meds that do help a lot of us u would not b able to take. i can understand that if u r nursing it would not b an easy decision to stop but it may b best in the long run for u both. the reason i say that is because if u and your dr can get u on the right meds u goods days b better and u will have more of them and your bad days may not b so bad. i was a nanny for an eight month old when what i found out to b fibro got really bad and i had to stop working. i do not have kids but i have nannied for a long time that was not my first job as a nanny. i also was a teacher in different infant rooms in different daycares so i kinda know just how hard it is to take care of kids with this. i also am an aunt of 15 and my brothers son i am my house every other weekend and i take care of him while my brother works at night at a resturant. at the end of the weekend i am so tired and sore. i cant imangine having two young ones 24/7. i hope u can find some help maybe hire a part time nanny so u have a break and could catch up on some rest. i hope things get better with u as u go down the road to find the right meds. and dont feel bad when u cant do everything your two year old wants u to do. just do what u can if u do too much u will feel worse. so pace yourself as a mom and know u r loved by those around u. and on this site u will find many caring people who will support u anyway we can.
hugs to u
Hi, as a mom of a 4-year old son who is quite active, I do absolutely nothing with him when I have flare ups, but let him play with his toys in front of me as I lie down on my sofa. And on days when I'm not so flared up,I take him outside for walks; I don't get to the parks as much yet since it's still chilly where I live, but sometimes if I'm already out with him running little errands, I stop at a playground. Indoor activities we do are coloring, block building, story time, and I do put him down for naps, even though he rarely likes to take one...he understands by now that when he has to go down for a rest, so does mommy. He'll be in a summer day camp soon, which I know your kids are too young for right now; try building a support network of family and/or friends, if you haven't already done so, to help you with the children once in a while; you need as much energy as you can have because at these ages your kids require so much attention. I have grown up daughters, but when they were small I didn't have this illness, so I had boundless energy to do homework, cook, clean, take them to dance classes, swim class, piano class, etc. Now it's just my son and I manage my time with him as wisely as I can. My husband is a big help, but he's having hip surgery next week, so that's going to be hard for me, but it'll be just for a few weeks that I won't have much of his help with my son. Anyway, I do let my son watch children's TV shows at times, but I try not to make it a habit. Reading is our big thing as well as independent, creative play. And nature walks, too. Take it very easy, do what you can, and rest as often as possible; stay hydrated, deep breathe, and talk with your 2 year old about how you're feeling sometimes; I find it helps when I talk with my son about my health issues, in a manner which he can understand. And he gets it when I'm in a lot of pain, or when I need to lie down; he understands and he'll do an independent activity. I hope this info helps. Keep me posted. All the best. Tara.
Remember if a plane is going down and you are a passenger, " put your own air mask on first."
For the Two year old I would keep a sippy cup of juice on a low shelf in the fridge, with a snack next to it, Make it their special spot. That way you can get it ready when you do the dishes or are in the kitchen. We did this for our kid and it worked great. We also kept her favorite tape in the VCR. I got so well trained that if I dozed off I woke up when I heard the closing credits.
I would strongly recommend that you find a family friend or grandma that can come over and watch the kids for two hours while you nap. I tend to fall asleep around 3 or 4 or on rainy days. If you just knew that on Tuesday and Thursday you could take a nap that may be a big help.
Pillow forts are fun to make and very light weight to clean up. They are also fun to bomb with stuffed animals. The 2 year old was active and I was laying down playing sleeping giant. Silly but fun.
I had to teach my kid to be independent. At times that made me feel like a bad parent. There were many times when she had to make dinner when older. But she is now 24 and has visited Israel, Vietnam and backpacked in Europe ( Spain, Italy, pompay) for 5 weeks, So I think it paid of for both of us.
Recommend looking into Mom’s groups where you get together and let the children wear themselves out. Also check into babysitting and nanny services (even if you’re home resting you will need lots of uninterrupted sleep so you can function ).
It must be incredibly difficult right now and it is wonderful that you’re reaching out for help. Take care!!!