Author & Founder Lorna Moorhead

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Motherly Advice from MS MOMS

What do I tell people who say "You don't look sick."

My friend has MS, what do I need to know? 

What happened to my sex drive and how do I get it back?

Slowing Down

Scared to death.

Scared to death
Question: I'm not sure if this is a question so much as a scared person questioning everything. About 9 months ago I suddenly passed out at work. I broke my nose, had a concussion, etc. from the fall. Prior to this, I have always been a healthy, fit person who loves to run and workout. No conclusion was ever drawn from the fall. However, since that time I have never felt "right." I feel weak if I stand for too long or walk for too long. This summer I started feeling like I had a bladder infection even though they tested me and said I didn't. I often feel "sore" like I just ran a marathon. About 4 weeks ago, I woke up and my hands were swollen and sore. By the end of the day I had no strength in them and couldn't use them. By the next day it was in my knees. My knees were painful but not numb. Since then, it has moved from my left hand to my right. I have a lot of pain at night and they go numb. During the day the pain goes away, but the numbness is still there off & on. It has now gone up to the middle of my arm near the shoulder. I am scared to death.

Responses: Hello, I do hope you are feeling better. Have you been to a dr. about these new symptoms? There are so many diseases that the symptoms are very close to each other. Sometimes it takes a process of elimination to find the right one you have. Yes, this is a very scary time. We are very glad you came back to ask questions, knowledge is power.    Mary C.

It certainly does sound as if you've been having a difficult time of it. I can understand you're feeling scared, not knowing what's wrong can be very scary, causing all sorts of thoughts and ideas to fill our minds. I'm hoping that you've been seen by your physician for these symptoms, if not, you do need to see someone soon. If you have been seen by your doc. and aren't happy with what he's told you after this length of time, consider getting a new doc. Not every doc and every patient will get along. You need to feel comfortable with and trust your doc. Many diseases can appear similar initially. If you haven't sat down with your doc, and gone over the symptoms as you have here I think you should. All too often we may see the doc over a period of time adding a symptom here and there, but not putting them all together as you have here. Docs forget things too, and may not necessarily relate your problem this week of swollen hands and feet to the symptoms of the bladder infection you had before. Have you done any camping this past year, received any bug bites while out or had any sore throats you may have blown off and not seen the doc for?? Let the doc know this. As for the initial episode of your passing out, it may or may not be related at all. Try to turn the fear that you're currently feeling into a constructive energy of helping find the cause of your symptoms. You should keep a journal, listing your symptoms, try to be as specific as possible. Include what you may do or take in the line of over the counter medicines to try to make yourself feel better. Does a product like Advil help the aches and pains more than a Tylenol does? Do you feel better if you omit certain things from your diet?? How about a warm bath or heating pad to the joint that is hurting, do you find this helpful? Or does ice make it better. What about one of the muscle rubs? Is the painful joint accompanied by any swelling, redness, or heat? Be as specific and descriptive as you can. Rate the pain, on a scale of 1-10, with 1 being the least and 10 being the most pain you've ever had or it being totally intolerable. Let him know if the pain is constant, or if intermittent, is it hot, burning, cold or a combination. Is it sharp, dull, throbbing, stabbing. Does it start in one spot and move around, have you ever had it before. I think perhaps a complete physical starting from scratch is in order. If you have a concern about a specific disease, let the doc know that, and why you are thinking that. I know that when I was being worked up for MS, my doc really covered all the bases from Lyme disease, an untreated strep. infection, to B-12 deficiency, lead poisoning and arthritis problems. I sure do hope that you're able to find a physician that will take the time to listen to the symptoms you're experiencing and find an answer for you. Cindi

I can certainly understand your fear. I remember when I first experienced my symptoms and it was scary! Have you been to a Dr. for tests? The worst of the fears truly lessens when you know what you are dealing with. Then you can get on with the positive steps that can be taken. And if this is MS then there are many resources out there. The ABC drugs are a great place to start. I am not clear if you have already been diagnosed with MS or not. If you have then I can tell you that I fall a lot and that is really frightening. But, sometimes that is part of the deal with MS. I have learned to use caution when possible. And yet sometimes when I do fall I feel some of my symptoms exaggerated for a time. Keep in touch with your Dr. and your Neuro. They need to know everything. Stress and fatigue play a huge factor with MS. I have still after 2 1/2 years have not quite figured out how to live a daily life without stress and fatigue but I work on it. Take care and let us know how you are doing. We are here to help! Kookcow

Slowing Down
Question: Any helpful hints on how to slow down??? It has been 4 months since I was diagnosed and I am really struggling with slowing down. I am an elementary school secretary, Christian Education director at my church and mom to two teens...I go a gazillion miles an hour.

I have learned to say no to a lot of things, but often I get to the point where I just can't move anymore because I'm so tired. I end up taking a 3 hour nap to get re-energized. During the summer this has been easy to do with not working in the school, but come next month, it's back to a 40+ work week!

RESPONSES:

STACY: Learn to say "no" to more things. I struggle with this constantly and have found that I have to take a couple evenings or a day and say this is mine. I do things with my children but we stay at home and take it easy. Keeping busy is a good thing, just learn to listen to your body and if it says stop then stop.

MARY: Sounds like me, I too was a go getter. You have to decide which are the important items & which are not. Like putting everything in a list of most important first & then next important & so on. I feel for you, although you sound like a very organized person. Try putting some break periods in between this job & that job, take 5 here & there. Then put a short nap period in every day at the same time, a 15 min nap at lunch will help wonders. I have faith in you, you'll make it. Take care.

PAT: All my family tells me to slow down. I figure if I can still go let me go but it doesn't always work out that way. For years I would be able to run all over didn't know the word SLOW DOWN. Just try to find time to relax a little ~your body will thank you!

KATHY: Kim: It was very difficult for me to slow down. I, too, was diagnosed last year. An RN for 19 yrs with 4 teens, I had a hard time. Now, I am grateful for every day and I realize that all those things I thought were "a hill to die on", aren't! Now I just take life one day at a time. Hope this helps. Keep in touch.

DEB: It's important to assess your priorities and know that if you push your body on a daily basis to the point of fatigue you will ultimately pay for it in the form of an exacerbation. You have to make the decision as to whether you want to be busy all the time or healthy. Take a look at your schedule and start by eliminating just one responsibility. See how that works for awhile and then try reducing or eliminating another chore or responsibility. I bet you will find that a lot of the things you think are necessary and important can either be left undone or completed by someone else. Don't be afraid to ask for help, or more importantly, say No to additional work put upon you by others. Best of luck to you!

LORNA: I think you need to, wait hold on got to answer the phone, fold laundry, file paperwork, feed the kids, work on website..etc etc etc. Everyone says we need to slow down. That's such a wonderful idea and the thoughts on how to slow down are just as great but when it comes to really doing it, without crumbling under severe guilt, it is almost impossible. Call me a pessimist. Most ladies here tell me I need to relax more and take better care of myself. I love them for it and honestly wish I could take their orders and still feel like half of the productive woman I used to be. I cannot give advice on slowing down as my fool proof method is: 1. Find brick wall 2. run at it full speed.

What happened to my sex drive and how do I get it back?
Question: I know this question will make some people uncomfortable, but I am at my wits end and need advice. What do I do about my decreased libido? I have a zero sex drive and it is depressing me. When my husband and I are intimate, it's great, but if I never have it again I could care less. We are intimate maybe twice a month and I feel horribly guilty as my husband needs it a lot more. It's gotten to the point that I don't want him to kiss or hug me because he gets aroused and wants more. I feel like I'm rejecting him and feel awful. Lately he's been making jokes about our lack of sex and every time a piece of me dies inside. I don't know how to talk to him about it. I love him very much and I don't want to lose him, but this is tearing me up inside. I feel that he doesn't really know what I'm going through because he won't educate himself about MS. Please, if some one has any advice I could use it, I feel so alone. I've never seen anything written about this problem and I don't believe that I am the only

RESPONSES:

MARY C.:  Hi, God love ya darling you are not alone with this problem. I have the same problem. You must talk to your husband about it, I finally did & as I cried he held me & we are closer than ever. My husband didn't want to learn about MS either. He still doesn't want to know much about MS yet, if I am Having a problem give it to him in a nut shell, the smaller the better. You need to communicate with your husband, then go talk with your gynecologist explain the whole problem, he can help. It is easier for me to talk to my gyno about this kind of a problem. Try talking to your Drs nurse whatever, whoever is easier for you to talk to. God Bless you, I will be praying for you. Please let me know how this turns out.

MSDEB :You are definitely not alone in this problem. I had a similar situation, and it was compounded by the fact that I was going through premature menopause as a result of taking Cytoxan (chemotherapy) to get my MS under control. It's important that you talk with your husband about your worries and do it at a time when you can both sit down uninterrupted and really communicate. Not wanting to know about MS is a form of denial for him so treat the situation delicately, but don't be afraid to open up to him and let him know how much you are hurting emotionally. That's what a husband is for - to be your crutch and supporter in time of need. There's a book entitled "Multiple Sclerosis: A Guide for Families" by Rosalind Kalb, Ph. D that has a chapter on MS and Intimacy. I recently ran across a website called The World of Multiple Sclerosis that's planning a series soon on sexual issues. MS Watch www.mswatch.com has covered this topic many times in their question and answer section. The information can be located in the archives. Talk with your gynecologist or nurse about it. They will be a lot more understanding than your neurologist. Often times, if you're experiencing problems with sex you are having some bladder issues too. Have you considered seeing a urologist? I saw one who was experienced in MS and he was very helpful. Good luck,  and hang in there. The reality is things won't be the same as before but you can find ways to make things better.

STACY : I have addressed this problem myself and it was the most uncomfortable thing I have ever done. First of all review the types of medication you are on and any side effects that they may have. I am on Prozac which can reduce the sex drive and make sexual fulfillment difficult. My doctor initially suggested that I go off of Prozac to see if that was indeed the problem. I did this without talking to my husband and found that I do need to continue with my Prozac. My husband did notice the difference and I was forced into this discussion with him. That was the best thing that ever happened. My husband had not realized what I was going through or what I was feeling. In fact he was feeling insecure because he thought it was him. Now we spend more time arousing one another and he pays a lot of attention to my needs. Also if you have not talked to your doctor swallow the embarrassment and talk to him. There are medication that can help or you may just need to alter the medications you are already on. Hope this helps.

PAT: I thought I was alone with this problem. I blamed it on all the meds I am on. My husband is the greatest though we only have sex rarely, but when we do LOOK OUT we make up for the lack of it. My advice is only to try to build up strength for that special time and in between do little lovey things, like write nose and leave in his jacket pocket just to tell him that you love him. I am very fortunate. My hubby of 32 years said he took vows and the tables could be reversed and he could be the one who is sick, so he will never lever leave me till death due us part. I don't know if I helped at all but I tried. If you care to keep in touch!

JANET:  I imagine you are concerned. I know it's not easy. When I was dx I had pain in my legs and it was hard to feel sexual in anyway at all. I had a new illness to cope with and also an illness that affected me sexually and most of the time, made me want to be just left alone. It took time but things did get better. I know you love your husband...it shows in your words. Try to talk to him and let him know how you're feeling... be loving and honest. You might be surprised at how much he will understand. Perhaps also talk with your Dr. and ask his advice. Hang in there and know you're not alone.

What do I tell people who say "You don't look sick."
Question: The question I have is. How do I convince some of my children's friends parents, PTA, and arrogant people that I am sick and at times I can not go here or do the things that they do? Sometimes the simplest tasks are so hard. Like mowing the lawn, fixing up the house, food shopping. I have worked till two years ago. I am a single mom with two great young kids. I do the best I can. I feel sometimes my kids friends parents and other people look at me as though I am a nut, I hear them say, she looks great nothing is wrong with her. How do I handle that and also how do I just not worry about what they think?? I really do need some assistance with this problem. It may not seem big to so people reading this letter, but it surely is to me. I hope you read this and get back to me.

Cindi Says: Nothing is more irritating to me than to have someone look at me, make a snap judgment and assumption. I use to get so irritated I'd want to lash out. However, over the course of 3 kids, who are now teenagers, I've learned an easier way to get around the whispers, insinuations and snide but uninformed comments. I volunteer. Strange as it sounds, it works. If the teacher needs room moms, I use to sign up, tell the teacher what I was able to do and not do, and why. (often that will come in as good to know info if you're having a relapse and your child is upset by that) I'd offer to be one of the moms that did the calling, or sitting at the table for the bake sale, or what ever else I could do within my limits. My youngest kid is on the football team, and I'm on the steering committee for the activities. I do the calling, the computer work, mailings, and the sitting at the table when they sell the school related items or do the bake sale. I'm able to help, be involved and active all within my own limits. You don't need to justify to anyone, why you do or don't participate. I know that I was personally feeling badly when I wasn't able to join in and do things with and for my kids, then sort of taking my irritation and anger out at the other parents for what I felt was their lack of understanding. I have never felt any pity from anyone about my limitations. I hope you're able to work out something so you can participate at your own pace with your kids.

Mom2All replies: I am so sorry to hear you are having a problem with people. People who do not understand MS are sometimes ,if not often cruel. You can't convince anyone of anything all you can do is educate them and let them convince themselves.

The truth is there is not much you can do about that. You can try to educate them if you really want them to understand or...You can try to ignore them. They don't really matter anyway. I myself do not have the patience to put up with that garbage. If you are worried that it is bothering your kids friends parents then just try to explain it to that small group of people. Not the Whole PTA.

It really isn't the concern or business of everyone in town. If you are worried that your kids are ashamed or embarrassed by the things you can't do. Welcome to parent hood. Kids are ALWAYS for one thing or another ashamed of their parent for some reason. Look at it like this at least you have a real reason and not some made up one in their minds. I am not trying to be cruel here just honest, You sound as though you worry to much what other people think of you . My thought on this matter is to tell you 2 things,1 simply try to educate them. If that doesn't work 2, to heck with them if they want to stay arrogant ignorant people. I commend you on being a single parent, sounds as if you are a loving one. The PTA? HA you have been one step farther than me. I can not stand the PTA. The only PTA meeting I have ever been to was before I was even DX with MS and the same arrogant, ignorant ,jackasses were there then I am sure they are still there now. Hang in there Sweetie Mom2All

Nurse Gwen says: Educate,educate,educate!

Start telling people about MS, but do not make excuses for yourself. Start with just one friend and tell them about the fatigue. remember fatigue in MS is considered a disability in itself. Perhaps your question is one that we all face with the invisible symptoms. Do the people really perceive you as someone that just do not want to participate or someone that can't do it?

I think our own conception of ourselves stand in the way. Our own self esteem is what makes us think that others are judging us, because we are judging ourselves.

I tell people about the fatigue or other symptoms and explain it, then it is no longer in my hands.

The other mother's will just have to deal with it. You are doing the best you can do, what more can anyone ask from you? ~Nurse Gwen

Lorna responds with: Having MS brings many of us into a limelight we had never wished to enter. Suddenly we have the suspicious eyes of family and friends on us , wondering whether or not we are genuinely ill or faking it. Many times I have dodged situations as if I was some guilty kid playing hooky just to avoid the accusing glances. It is wrong that we should have to feel this way. It is bad enough that we have been afflicted with this condition, let alone have people doubting us. (Do they honestly think we LIKE being sick? Who do they think we are?!)

The typical response most people have to our fatigue and need to rest frequently is that we are LAZY. Many of us feel inside that, maybe we are in fact lazy. Sometimes we pus ourselves ,making ourselves sicker, just becuase we feel we have a certain quota to fill before we can rest without being considered lazy. this is silly and self-defeating.

Letting other people make you feel upset is self defeating behavior. If they don't "get" MS, print up a couple pages of this website and hand them out. If you wish to take on your local PTA, pass out the pages at a meeting. Your children, if they are old enough, let them come to this website and check it out. Wandering around in your life letting these people get to you , is not going to help you be any stronger. If you can ignore them, if you must confront them, but don't let them rule you.

If they really harass you , ask them to take about 3 Benadryl and have a few drinks. Then tell them to tie ten pound weights to each arm and leg. (Don't forget the feet!) Now that they are drugged, dazed and weighted, ask them to go shopping, walk straight , talk straight, don't fall asleep, and remember the whole list. That is only a sample of a few symptoms of MS, if they wish next time they can move on to blindfolds for visual problems and Novocain for loss of sensation. That ought to make them pause.
Remember your true friends will maker an attempt to understand, not to judge.

Stacy says: I think this is a huge problem as I am a person with MS whose symptoms are mostly invisible at this point. I think a good education program is in order, A time to teach parents a children of all the disabilities that effect this nation not just the visible ones. I am blessed to have a circle of friends and associates that are either open minded to me or have someone in their life affected by MS. These people understand what I am dealing with. The MS Society or Pathways have a number of education pamphlets not only dealing with the obvious but dealing with the not so obvious. Be aggressive, educate your community that not all disabilities are easy to spot nor are they necessarily permanent If we do not educate who will????? .

My friend has MS what do I need to know?
Question: My very best friend has MS. I love her dearly and I want to know everything I can about this disease. From what she has told me, it ahs only effected her eyesight and she has no feeling in her left side. she constantly has headaches and i want to know if there is something that i can do to help alleviate these. I have recently moved in her with her along with my daughter. We are trying very hard to keep the noise and stress level down. i have been giving her shots weekly and her medication daily. i make sure she does as much as wants throughout the day but sometimes she gets very tired and I am wondering if I am letting her do too much. also do animals provide a sense of comfort or therapy for people with MS or are they bad for her? Please let me know what you can. Thank you in advance.

Mom2All Replies: You are a dear friend . I find to be your questions about your friend very loving and you should be very proud of the nice lady you turned out to be, That being said I will answer your questions in the order I received them:

1.You want to know everything you can and that is a good thing just make sure where you get your info is a reliable source. This is a good start for you. I really hope I can help .

First off ,the most important thing you can do for Diane is just be there. You see after the denial that we MSers have this crappie disease we then go on to our own period of mourning the loss of our old life, our old self, and the self we could have been. That is the roughest part I think. We seem to lose a lot of friends during this time. We also have some major mood swings and aren't very nice all the time. We have pity parties sometimes. and we have a right to them). Make her feel important!! She must know you love her but that isn't the point. I know my children and my wonderful husband love me too but I sometimes do not feel needed here. I don't feel capable of being ENJOYED. Make her feel enjoyed . Headaches ...There is another one I am familiar with. I take a drug called Neurontin. Ask the Dr. about that, it will help with the numbness also. As far as her eyesight being affected...listen here that is enough to make a person go crazy! And the only thing I am aware of to help that is Steroids and I do not recommend that unless she is desperately seeking relief or not Mobil. An anti depressant is needed not because she is crazy but because MS causes depression. Not just being sad because we have MS either ,that does it but if the frontal lobe is affected then depression gets to be a problem. I am only suggesting that if you notice severe mood swings or a change in her usual behavior. Sometimes depressed people do not know they need help and even if they do they don't want to admit it. I myself was like that.

I am not sure what environment you are in but heat is bad. Pets are good. Let here do what she wants to she is the only one who can say what her limits are .When she does something stupid she will know it. I always say "It is my pocket full of change ,If I want to spend it I will. It is only worth what you are willing to pay for it." If you don't understand that now you will by the time she gets done explaining it to you . You have to let her know she is still alive. make she lives and doesn't give up. One of the ABC drugs can help. I am on Avionics .I was going to switch to Copaxone but ...hey...if it isn't broken don't fix it ...So I will stay with A for now. She is very lucky to have a friend like you . A bunch of really good info is on a site called IMSSF I do not have the address at the moment just put that in there you will see it pop up. If she would like to ask me anything or just vent ...You too!! can email me at zippo@lani.net. Take care ! Mom2All

Cindi Adds: This response is for Kathie. It's noble that you want to be able to help your friend. Often when MS rears it's ugly head, true friends will be few and far between. There is a lot of information that you haven't included in on your note. One is how mobile is your friend? Is she able to get around on her own? Is she very low vision and unable to care for herself? How did she manage to provide for her needs prior to your arrival? Have you asked her what she wants? Is she mentally impaired, or hindered in some way due to the MS? You may very well be missing the most important avenue of information. What has her physician said about the headaches you state she is having? Has she been worked up for this problem? If not, she needs to be encouraged to see her doc. for a diagnosis and an appropriate treatment. What was she doing for herself before you moved in? Limiting what she has done and is able to do can cause more harm than good. The old "use it or lose it theory", fatigue is a major factor in MS, and only the individual can gauge how she's feeling. MS, while a pain in the butt, can be something that one can learn to live with, many of the symptoms can be treated. It's when someone else views the individual with the MS, as a poor pathetic creature who is incapable of doing anything on their own that causes more difficulties. For someone to move in, and make drastic changes, may only be met with certain resistance and even perhaps resentment. You've also mentioned that you moved in with her. While you did not mention any specifics, I am hoping that this was something that you both decided on, setting up some ground rules and guidelines to go by. It can be very difficult for individuals to move in together when they are use to being on their own. It's difficult to know what to advise when so little is known of the actual situation as to why the two of you are together. I am strongly suggesting that you contact the NMSS (1-800-FIGHT MS) and request any printed material they have. Education is your best tool for helping your friend. You also need to sit down with your friend and find out what she wants, she may have her own specific ideas, wants and desires as to how her life is to be lead. Getting all of this out in the open will make the whole living together situation go much smoother.

Lorna Speaks Up: I agree with Cindi about the heart to heart. Moving in with your friend, you must realize that you are in her home, she is not in yours. Becoming a caretaker is a tough job, a basic understanding of MS is just not good enough , you need to know more. You need to be able to put yourself in her shoes at any given moment. To give up a good part of your life taking care of your friend is very noble indeed, but it must be a partnership. Your friend with MS must WANT the help. I do not wish to sound harsh , but I am not able from your letter to tell how much thought and preparation went into this move. Many people intend to help and rush into things, only to find that being a caretaker is a 24/7 job, that is tough , painful, and full of sacrifices. In the long run, I have seen many relationships split up solely becuase of the strain caused by being a caretaker. To put it bluntly, people who don't have the stamina don't rush out to become soldiers, so why should people rush into such a tough job as caretaking? Many people do not have the choice as to whether or not they caretake, but for those that do have the choice, I always try to make sure they know exactly what they are getting into.
            Now you mentioned you are giving her shots weekly, I believe that is Avonex she is taking then. Do you know if her MS is relapsing-remitting, or progressive? These are very basic elements that help you understand what you have gotten yourself into. I know that Avonex has side effects that are similar to a flu but do not know if it is likely to cause headaches. Copaxone patients have mentioned frequent headaches and it is one of the reasons i have been so horrible about taking it regularly. However, most of these headaches seem to be alleviated with Tylenol or Advil. Make sure she mentions these headaches to her doctor.
                Without rambling too much the best thing you can do for your friend , is get educated. I suggest reading the MS Basics here on the site and then purchasing some books about MS. There are recommendations in the Bookstore, and many of the ABC drug companies offer free material about MS. You might try calling Avonex Alliance at 1-800-456-2255. Your local Nation Multiple Sclerosis Chapter should have a "closet" where they keep materials that they loan out , such as books and video tapes. Read, watch , and learn. It is the best thing you can do for you friend. Take Care, Lorna msm_pres

Terri Puts In: For me, it is very important to keep the noise level down. I know that's not always easy to do though especially if you have children. If she could have some time alone in her bedroom a few times a day, that can really be helpful. I do that a few times a day. Just laying there relaxing away from other people and the TV can be a big help. I take Aleve for the headaches I get which helps. As far as having a dog around, I think that depends on the dogs personality. We have a German Shepard who was 2yrs old when I was dx'd. Seems she got immediately more protective and is right by my side most of the time. She's even been know to break my falls for me, LOL. She's a very calm dog though and it's soothing to have her around. Hope that was of some help.