How do you manage your day

So I need your opinions, every day is the same thing i am in so much pain i get terrible headaches daily have now for about 6 months doc says take lyrica and try to rest. well like i said ever day same thing i get up i get on computer take my morning pills and eat some oatmeal. about 2 hours later here comes the headache it gets so bad my eyes hurt terrible. i go lay down. some times i fall asleep sometimes i just lay there for an hour or two, then i go back out and take afternoon pills i feel a little better but still headache is there. i am not tired as before though. i dont do very much i get on treadmill or bike for 10 to 20 minutes(my left leg is in constant pain and very weak)then i go sit down maybe try to do some housework YA RIGHT LETS BE HONEST I sit down and play on the computer some more but i might do a bit of work vacuum or load the dishwasher. any way the question. is everyones day like this or is it just me?? i have no energy or very little. and please dont tell me to exercise or go for a walk that doesnt work i have and do do that. i just would like to know what you all are taking on a daily basis to help you with that and i am taking effexor x2 daily i am not depressed but because of the breast cancer and all they prescribed it it might be helping i dont know, my boyfriend who doesnt live with me when he calls me and asks how i am feeling i dont like to tell him because every day is the same crap everyday. nothing changes but some days i do get a bit of relief. but i can hear in his voice how fed up he is about me being in so much pain E V E R Y S I N G L E D A Y well you know what i am sick of it too and so was my ex husband of 25 years who said he is tired of dealing with the M.S. ya he is tired of dealing with it. But today i told him that my neuro said i was having a exaserbation and just ride it out. well my boyfriend who obviously knows more than the neuro says "I dont believe it I dont believe every time he always chalks it up to the damn MULTIPLE SCLEROSIS" It really hurts me to hear that like i said i heard it before. what the HELL do you want ME TO DO i am doing the best i can

[jimeka]

I am so sorry that you are having the added stress of no support from your boyfriend. Just recently I get up in a morning, shower early, while hubby is still around in case I fall, I then take my pills and wait for them to click in. I FaceTime a friend while I am waiting and we put the world to rights. This helps as I can either start the day with a cry or a laugh. The rest of the day I spend pottering , like you killing time, until it’s time for bed. Take the pills again, and it’s off to sleep, hopefully. Sorry I can’t help, but it does help venting on here, we are all in a similar situation. Big hug, Blessings Jimeka 🤗

[Hidden in reply to jimeka]

thank you thank you thank you for telling me i am not alone. i do the best i can i try not to be so sedated but i am not winning that battle. i do what i can when i can

[jimeka in reply to Hidden]

You are doing your best and that is a triumph in itself, don’t be so hard on yourself, 🤗

[Hidden in reply to jimeka]

thank you so much love that is what i think i needed to hear. i am very hard on myself i know my ex husband was not a nice guy and i always tried to be better for him and do more ya know and i think that way of thinking is still in me

[greaterexp]

There are so many of us who can relate to your typical day. I'm so sorry about the pain and the headaches. Is there any possibility of getting a referral to another neurologist about the headaches and pain? If it's not being controlled with what you are on, there may be other answers. Could a pain clinic be of help? Pain control and quality of life are closely related, so I would keep pushing for answers.

I'm also curious as to whether one of your morning meds could be contributing to the headache.

Let us know how you're doing. We understand the battle.

[Hidden in reply to greaterexp]

yes they do contribute, i had breast cancer so i am on the drugs to keep that at bay and the m.s. drugs all cause headaches also i was assulted and had my nose broke with facial fractures so ya i am a mess and it all contributes. I have to deal with terrible fatigue again to all the meds and history i explained. i had mri's and it shows nothing dr said that is possible normal. he said to ride it out because my GP said i had an infection and had me on antibiotics and that the sterroids would interfere with that. possible chronic headaches due to m.s. or maybe due to the facial fractures? they were not sure

[Jesmcd2 CommunityAmbassador]

Woooo, back up! Your neuro actually said that your having an relaspe and told you to ride it out? Hidden was there a really good reason he said that? Otherwise find a new one!

I'm really sorry about the headaches! Maybe change your routine in the morning? Not get on the computer until later? Give your eyes time to adjust. Or have your eyes checked? Or it could be migraines? Have they ruled any of that out? IDK!😔😭🤗💕🌠

[twooldcrows]

people that don't have it don't understand it and don't want to hear it is the MS but it is always there with us so we have to find other ways to get around it ...i know i sound like it is easy and i know it isn't ....i do take aleve for the head aches and can't read much or spend much time on the computer for that is what causes my headaches so i have to go around the house and find things to do ...i know house work is hard to do but ha grab a towel and dust a little or feed the birds some food or the squirrels ..they are my best thing to do as long as it isn't icy outside don't want to fall in the ice....but just feeding them everyday is my duty for the day or having to go to town to get there food...sometimes it is just something simple as that ...i sew sometimes not to much for my eyes aren't what they use to be ....a puzzle is great also ..whether it is a gig saw puzzle or one in a book ..just have to find things to occupy the mind ...or if tired take a nap...yes it can be a burden having MS but i will not let it win this race and i just find things that occupy me so i am not just sitting around and getting depressed ...good luck to find something that can entertain you ... i do the fill ins or find a word no good at crosswords ...or do the color in the books that my daughter and grand daughter do ...well even my grandson likes some of them ...love and much happiness is my favorite thing ...lots of laughing at this disease or screaming if it gets to bad ...you need someone special to help you deal with this ...check and see if there is any meetings with others with MS they usually meet like once a month or just ask you nero..doctor they should know of them ...good luck hate to hear your so down ...love yourself for you are worth it ...don't let others put you down in the dumps for having it for you didn't ask for it ....love and much happiness.

[leking1]

Good Morning, Sandra. I am so sorry that you are having to deal with all the pain, the negativity around you, and MS. I start my day by calling my best friend. We have been friends for many years, and she was the one who drove me to the first Neuro

appt. in 1982. I was diagnosed later that year with MS, so she has been with me for the whole ride. We talk every morning, just to catch up and start the day. Her name is Grace, and I wish you had a Grace in your life, that you could talk to, tell her what is going on, ask her if you need/want anything or just KNOW that she is always there for you. The rest of my day is much like yours, except I don't have a boyfriend or a husband..I live alone with my 2 little dogs and my cats...the fur babies are a lot of comfort and can be very entertaining! If I feel up to it, I go outside and garden a bit, weed or plant more flowers...or just enjoy what is already there. If I can't, I read, or take a nap, or play on the computer, or on other good days I volunteer at the local Humane Society. The animals are so grateful for any love, care and attention that we can give them and their love is unconditional, always.

My Neuro referred me to the Pain Clinic, and after a procedure

that did not help, I am taking a med that is helping some now. Please find what YOU need and want for you, you are worth it! I spent most of my life trying to please everybody around me, and never did, but I can make me happy, and I can make me feel better! You can do the same for yourself. May the Angels watch over you! Linda

[Peruzzot]

Something that might help with headaches when using computers is wear wear glasses that have a specific filter made for computers. Some of the light emissions that computer screens give off contribute to some people having eye pain, simple headaches and migraines. The filter stops those light emissions.

Keep looking for something to help with the pain management that will work for you.

As for the boyfriend if he's being verbally or emotionally abusive to you, kick him to the curb. You don't need that added stress which might also be contributing to the headaches. We're all tired of having to deal with the MS issues we are forced to live with. He can't even imagine what it's like for you...he's just whining because you can't cater to his every whim. Then again he might just be frustrated that you have something that he can't easily fix for you and he's taking it out on you and not realizing he's doing it.

[mrsmike9 in reply to Peruzzot]

It's good to hear you say that about the boyfriend. I was thinking the same thing! If he can't get off you case, trade him for a pet. They don't crab at you and accept you where you are! But perhaps he doesn't know he is stressing you out. It may be time for a talk.

You are dealing with a lot. From what I've read you not only have MS, you have a neurologist who doesn't listen (time for a talk with him/her, how you don't think they care, their "bedside manner" is crap, etc. Lay it out there!) You had cancer and are still dealing with that, PLUS the trauma and pain from being assaulted! (Did that give you a concussion?) Holy cow! Pick one and it's a lot to deal with!

I am in awe of you for not sounding really angry! Pick things out and start to deal with them. I would gear up for a good talk with the boyfriend. You don't have to make an appointment with him. If he can't be more understanding perhaps it's time for a change. (I'm a cat person, myself.)

Make an appointment with your neuro. Have a good talk with him/her. Spell out how you are not being heard and all of your medical issues. If things don't work out, change.

See a good therapist! Some are better than others. Between the trauma from the assault and everything else, no doubt you could use one. I finally found a super woman and am feeling better than I have in a long time.

My dear. Keep plugging along and try to keep your chin up. We are only a message away. Please let us know how you are doing!