I just have to wonder if I am one of the only people with MS that has to fight with his or her family about eating??? They are always trying to push me to eat when I am not hungry... I have never really been a big eater. I am a strong believer, that IF I am hungry I WILL eat! Just leave me alone until I want to eat and don't try to guilt me into doing something I don't want to do. Every single day, my family tries to get me to eat meals or what ever. Continually asking me, "Are you hungry? Do you want me to get you something to eat? What do you want to eat?" or saying to me at some point "YOU have to eat now! No excuses, YOU are GOING to eat!" One problem, I am not hungry. If I am not hungry, I have problems eating food!!! It's like my body is resisting. I either get the hiccups or I aspirate (meaning food gets in my bronchial tubes or wind pipes) on what I am eating.
So, does anyone else have this problem of not being hungry when most "normal" people would be hungry?
Something else I wonder about is insomnia... Is this just me or do others suffer from it as well??? IF I sleep 3 or 4 hours a night I am doing really well... The only day (night) I rest really well is the night I take my Avonex shot... I sleep like 12 hours straight... I do NOT nap during the day. IF I do nap, it is only a 20 minute cat nap and that is very RARE... My daily regiment of medications make me groggy, yet I can not sleep... Neurontin, Baclofen, and Topamax all have warnings of drowsiness - which they do with a vengeance!!! BUT no rest for the wicked, must be... Not to mention the every day fatigue that is brought on by the MS alone... I feel so tired sometimes I could break down and cry, yet I don't... I keep my chin up and my mood light and smiley some how... By God's grace, I swear, it has to be...
So, does that happen to anyone else??? Or am I just the freak of nature that I think I am???
I read blogs and numerous studies where people with MS are affected so badly by the heat... YET, I CAN NOT handle COLD... I THRIVE in the HEAT of summer... I am talking HEAT - temperatures of 65 degrees and above... Even 110 degrees does not bother me a single bit!!! I am moving around like a teen-aged kid... Running to the lake to go swimming with my kids - okay not literally running, but you know what I mean... However, once the weather drops below 65 degrees, I am in TROUBLE - and I do mean quite literally!!! My muscles start getting stiff and it gets hard to move, even when I want to... My family doctor and neurologist can't figure this out because everyone else they know that has MS complains about the opposite...
So, am I the only "weirdo" out there like this??? That thrives in heat and does poorly in the cold???
These aren't sudden symptoms... I have had these all along... It's just something I have had to ask because my daughter and I just got into a spat over me not wanting to eat lunch yet... I didn't eat breakfast and it's like almost 3 and I don't want lunch... She is just being a worry wart... I have to laugh because it is one of my personality characteristics she kind of picked up along the way...
I hope someone will write back and let me know if it is only me or if they also go through symptoms much like what I am experiencing... I certainly would appreciate the feedback!!!
Hugs and smiles :)
Jen
You are not alone with the eating...The day they told me that I had MS, my Dad said it is because you never ate right....I have heard this my whole life, still. The doc did a test, my stomach digests 50% slower than normal...Gastro Doc.
ReplyDeleteI love hot humid weather now since I freeze...I used to be bothered by heat but not anymore??
I do not know anyone with MS who can sleep, so I take meds to help me sleep
Hi Kim,
DeleteIt's nice to see I am not the only "weirdo" whose body likes the heat... I was beginning to think I was the only one!!! Seriously, everyone I have spoken to that has MS, state they are heat sensitive and do better when it is cooler... Me, the warmer the better!!! I haven't went to see a gastro-doc, but I am never hungry... I eat one meal a day, or pick IF my family makes me eat something during the day... I just can't seem to eat UNLESS my BODY tells me I am hungry... IF I am forced to eat any other time, I GET SICK!!! literally sick... I am talking bloating, gas, nausea, the poop-scoot-booty, and even may vomit, depending... It's horrible... I can't stand eating half the time, because it's like food doesn't even taste good... BUT if it is something I want, then I am OK... Chicken and salads - I am good with them... LOL...
Sleeping is a joke... What is sleep??? Most of the meds I take is supposed to make me sleepy - which they do, but sleep evades me... Not that I am fighting sleep, it just doesn't come most of the time... I don't know how I make it through the day half the time because I am so exhausted most of the time... But I make it... My doctor's don't want to give me sleep medication because of it being so addictive, so I just suffer through... I pray to God every night that I am able to sleep when I say my prayers... UGH, who knows... Maybe one of these days, I keep praying... LOL...
Hi Jenn,
ReplyDeleteUnfortunately I love to eat, and have no problem in doing so. With a more sedentary lifestyle, I now weigh more than I ever have in my life. I was always super skinny...now, not so much.
I am an insomniac. Sleep eludes me even when I am exhausted. I don't take any meds at all, and find I am fatigued in the afternoon, but don't dare take a nap because then I would be up all night, not just half of it!
I am one of those MSers "blessed" with both heat intolerance and cold sensitivity. Anything above 75 is too hot, anything below 60 too cold. The spasticity is wicked when I am cold!
Congrats on your new granddaughter, she's a cutie!
Hi Karen,
DeleteThank you! She is a sweetie pie!! Mikey and Shoni say she is a good baby too... She only gets up once during the night to eat and get her diaper changed, then is right back to sleep until 8am... We truly were blessed!!! They truly were blessed because she could be a cranky baby instead... BUT she is just like her Daddy was when he was born... Up once during the night, then back to sleep... during the day she is good... When she is awake, she is bright eyed and bushy tailed - very alert for a two week old baby...
I too have a problem with weight... I don't know why since I don't eat anything really... I guess it could be since I don't get as much exercise as I did before... It really bugs me!!! especially when Dr. Britton's wife gets on my case about it... Like it's something I can control... I have fought with my weight all my life - hypothyroidism - and have never been very small thanks to my thyroid problem... I try and try to lose weight, to no avail... It isn't like I eat bad foods (junk) or something like that... I DO eat healthy foods, and only make my foods HOME MADE!!! Everything is home made in my house!!! From Spaghetti sauces to chicken nuggets and french fries... Nothing is boxed or store bought... Well our bread, condiments, and pasta's - they aren't home made - but you get my drift...
Many of my MS friends that live in my area are like you with the heat and cold sensitivity... I feel so bad for them because all I suffer with is the cold... I thrive in the heat and can get out and about, have fun in the sun, and play when they have to hide in the air conditioning when the temperature rises above their tolerance levels... Even if they go to the pool you can see that they are just biting their tongues and fighting the pain... It makes me feel bad because I feel so good - other than being fatigued... I feel so guilty feeling so good when they feel so rotten when it is hot out yet they want to have fun with their kids or grand kids... It's the empath in me I guess... My one friend tells me I shouldn't feel bad because I am down all fall, winter and most of the spring when she is out and about, but I do anyway... Can't help myself...
I totally empathize with you on the naps in the afternoon... IF I was to sleep in the afternoon, I wouldn't be able to sleep at night either... Lord knows, no matter how bad or how tired I was I would still be up ALL NIGHT LONG!!! Unless of course it was shot day... Then of course I am sleeping on and off all day long and am able to sleep all night too... It is crazy, really it is... So, you're not taking any medication for your MS therapy at all??? I am absolutely dumbfounded by that idea... What or how are you being treated for your MS then??? Are you doing homeopathic treatments??? I am totally interested...
Hi Jen,
ReplyDeleteNo, I don't take medications for MS. I do use diet, exercise, yoga, and mega vitamin D. Until "they" come up with a cure, or at least a drug with very few side effects I have no plans to take any drugs in the future. It's a matter of personal choice, and the fact that I do not tolerate drugs of any kind well. There are quite a few MS'ers that don't use DMD's.
Hi Karen,
ReplyDeleteUGH, I am on a whole regiment of MS meds it seems... I also use my diet as well... I try to exercise, I yoga and meditate, AND I ride my bicycle when it is nice and warm outside - without dampness from the rain... I also take mega doses of Vitamin B12 as well...
Okay, Here is my regiment of meds... Buckle up, it's a bumpy ride...
Vitamin D3 - 2,000 IU; I take 8,000 IU daily... 56,000 IU weekly...
Vitamin B12 - 2,500 mcg sublingual; I take 1 tablet each day...
Avonex 30mg prefilled injection - 1 injection per week on Friday night before bed... This is the only true "DMD" med...
These next three are the ones that are supposed to help with the "vibrations" and muscle spasms and spasticity...
Neurontin 400mg; 1 pill 2 times daily
Neurontin 600 mg; 1 pill at bedtime
Baclofen 20 mg; 1 pill 3 times daily
These are for other medical issues I have had for ages, but...
Levothroxine 112 mcg; 1 pill daily
Topamax 100 mg: 1 pill 2 times daily - migraine control and supposedly should help with the MS symptoms (????)...
PRN (Or AS NEEDED Medications)
Ibuprofen 800 mg: 1 tab 2 times daily as needed for pain
Percocet 10/325 mg; 1 tab 2 times daily as needed for pain
Imitrex 100 mg; 1 tab at the onset of migraine. Repeat in 2 hours - not to exceed 2 tabs per 24 hours as needed for migraine.
Some of these meds I can't get rid of... I have to have them, but Lord knows I would love to get rid of some of these... I don't take the PRN meds unless I absolutely positively have to...
Crazy I know... ALL these meds...