MS.. doing my best not to freak out

I do my best not to "freak out" over my MS and what it is doing to my body but there have been many times lately when I wonder when the progression will stop.  Too many things have been occurring which I hope will not continue for long, but nobody can reassure me of anything.

When I was with my parents today, I mentioned that it could be very possible that my driving days ended a month ago and my mom's reaction was that of complete shock, while my dad automatically said something like "no, you'll be better soon."  It's a normal response to wish things to return to how they were before and I am not being negative in the least.  I am choosing, for the first time in my life, to face what could be my new reality before it happens.  This is not to say I am wishing for this to be true, but I'd rather come to terms with it "just in case."  I'd rather be excitedly shocked if I get better than speculate.  Besides, the way things have going, driving or not being able to drive is the least of my problems.

I am relieved that I have an appointment with my urologist this Monday, even though the reason for seeing him is a post kidney stone check up.  What has been happening to me AGAIN is not being able to empty my bladder completely, yet feeling incredible urgency to go and not quite making it to the bathroom far too often.  But when I do make it in time, the amount I am emptying is so little that I can still feel my bladder is full.  My nightly dose of Terazosin has not changed so I believe this problem is due to my MS acting up.  I may be wrong, but I feel the next step will be for me to self-catheterize, which I have done in the past.  Ugh, I hate needing to do that but if it is necessary, so be it.  It's better than getting a bladder or kidney infection and I'm tired of needing to wash myself off and change panties repeatedly throughout the day.  I don't have enough energy for all this!

I wonder if this is why I have been feeling completely run-down every single evening by 5 or 6pm.  It feels as if every ounce of energy drains out of me and it takes all my strength to even remain conscious.  These sort of things tend to aggravate me since I feel confused and I'm not sure what is causing these disturbances in my every day life.  If I had the answers as to "why" I'm feeling so unwell, I would not be quite as upset yet I choose not to be angry or depressed.  The last thing I need is to allow any of this to get worse simply because I couldn't keep hold of my emotions.  I learned my lesson long ago and I won't let myself slip.

MS.. this flare has been going on for a month already?

I hadn't realized it until Mom mentioned it yesterday but tomorrow will be four weeks since I haven't been able to drive, or one month that I have needed to rely on others to drive me anytime I have had the need to leave my house.  Wow, a month already?  But more important, it has been a month since this exacerbation began.  Personally, I prefer to call it an exacerbation, as is the correct term, even though most people tend to call it a flare or flare up.  Either way, the meaning is the same and it is not enjoyable in the least.

Since this exacerbation began I've had a few terribly bad days, not even counting the weekend I had a kidney stone, but I feel I have been handling it pretty well.  What I had done in the past in such an instance was to pack up my girls and go to my parents' house until I felt better.  As much as I love Mom and Dad, this change in scenery brought on a lot of stress to all of us (OK, mostly me!) and it didn't work out too well for anyone.  This has been the beauty of becoming close friends with Dorraine and her coming to my house four times per week, as opposed to only twice.  She helps me take care of my three girls, does most of my housekeeping and spends time with me, allowing us time to share thoughts and laughs.. and this has been almost life saving for me.  Remaining independent has become extremely important and with Dorraine's help, this has been possible without too much effort on my part.  My parents call me daily to make sure I'm doing alright and bring me anything I need so between them and Dorraine, I can't imagine wanting for anything at this point.. well, aside from having full use of my body, that is!

Emmi Sue went to the veterinarian this afternoon to have her two week blood sugar check and I wasn't happy to hear that it had not gone down too much.  The vet was hesitant to increase the amount of insulin she is receiving because of her small size, so the dosage has not changed.  I hope her sugars will be improved in two weeks for her next appointment but only time will tell.  I'm feeding Emmi Sue and her sisters only food bought at the vet's office since it is more natural and very low in carbohydrates, so I am following medical advice as to what they should be eating.  I'm not sure what else I should do at this point and feel quite helpless when one of my girls is not doing well although to look at her, you would not know she isn't feeling as good as usual.  She is as loving and clingy as ever!

Ahh, so tomorrow is my four week anniversary or "monthiversary" of this flare up.  I just wonder if my body will return to how it was before this began or if it will remain this way at the end of the exacerbation and I will need to give up driving and doing many things for myself indefinitely.  The "what if's" of MS are the most difficult part of this disease.  It's the never having any answers and no one being able to tell you what the future holds that can become aggravating.  But such is life.. and yes, it sucks.  But getting angry or upset will not change anything so I'm choosing to not stress out over things I can't alter.  Damn, sometimes I hate being mature.  Throwing a temper tantrum is kind of fun, in it's own way.  Oh, well.. I suppose my rational mind won't allow it.. at least not tonight.

As I chose this last image for my blog, it got me thinking.  I'm sure the person who wrote it wasn't thinking of anything such as MS, but in my mind, it fits perfectly.  I wish I could let go of the MS itself, but since I can't expel it from my life what I can do is rid myself from thinking that stressing, worrying, even crying over what is happening to me will somehow change the outcome.  In fact, all these actions WILL change how I feel, in the negative sense.  Too much stress has been shown to bring on an MS flare up, so why would I want to remain in this state for a longer amount of time?  No, thank you!  It's the same reason I am an advocate for getting any sort of psychiatric care, if necessary, when dealing with MS or any other condition.  Feeling anxious, eternally down in the dumps and all that entails is no way to live and it ruins every aspect of our days so if this is where you are in your life, I urge you to speak to your doctor/neurologist.  I highly dislike medications but sometimes, they are necessary to improve our lives.  And I do love being happy and smiley. :)

MS.. talking about sex part 2

I wasn't too pleased with yesterday's post.  Much of last night and today was filled with thoughts of what I could add to make the "sex talk" more complete, at least in my eyes.  I try my best to write from a very personal perspective and I feel I failed to do this yesterday and for that, I apologize.

The most difficult aspect in discussing sex with our partners, at least for me, has been facing it as a single woman.  For some reason men tend to feel it is their inherent right to ask, before even knowing too much about me, if I am still able to have sex.  Why is this the first thing on anyone's mind?  OK, I suppose it would cross my mind too, but I would be embarrassed to voice it right away since it wouldn't be my business to know at that point.

The way I usually meet men is through online dating.  It has allowed me to keep a social life, at least in dating, since I am not able to get out as often as I would like.  I interact with these men through messaging, phone calls and then meeting for our first date.  But honestly, 4 out of 5 times, these men will ask me if I am able to have sex, inspiring me to reply "yes, of course I can but not with you tonight."  I may live alone and am somewhat disabled, but I am hardly desperate!

Although I was a bit unsure of how it would be to date, this soon changed.  Strangely enough, I have come to enjoy dating the last few years.  My body aches more, the MS is visibly apparent since I can no longer leave my house without my quad cane, I limp more than I'd like.. but with the passing years has come a sort of acceptance of my disease and what it has done to me.  Most of all, I have embraced that none of it was my fault.  It happened by luck of the draw, or unluck, as is my case.  Life isn't always fair and this is what I have to face in my life.

I guess with acceptance of the MS has come an understanding of my body and what it is and isn't capable of doing.  I am still a woman.. and a very sensual, sexual woman at that.  I will not stifle this side of myself just because the MS is obviously present.  And the wonderful thing I have found is that with each passing year, men have become more accepting and understanding because they, too, have gotten older and are no longer as energetic or agile as they once were.  This has made talking about sex easier for me, even though, as I'm sure most of you have noticed by now, I do not have much trouble in voicing my thoughts and feelings.

I think the most important thing those of us with MS need to do before discussing sex and intimacy with a partner (including both husbands or boyfriends), is having a heart-to-heart with ourselves.  We are still the same person as before, even though our bodies may have changed in the way they feel, look and/or respond.  If we are no longer comfortable with ourselves, how is someone else going make us feel sexy?  Well, no one can do this for us.  We have to do this for ourselves.  It's the same as expecting someone to make us happy when we know all too well that happiness comes from within.  So even if the first thing you must do is a little sexual self-exploration to find what still feels good and what no longer does, I feel it's a good place to start.  There is no shame in learning how your body will react, since your pleasure points may have been altered.  If you understand yourself, imagine how much better you will be able to communicate with your partner.  And no, I did not read this last part on any website or in a manual.  It is my own personal advice to everyone as I cannot think of a better way of knowing what still feels good or what no longer is a turn on than figuring it out firsthand.

I live alone with very little human contact, spending much of my days thinking!  As a 43-year old single woman with MS who does not work, many thoughts go through my mind but most of those center on what I can write in my blog or how I can improve on it to make it more interesting and/or informative.  I take more pride in this blog than most of you probably even realize!  I welcome comments on this and any posts as I wish to address as many MS issues as possible and if there are any questions I can answer, please feel free to ask.  Thank you to all who continually read my posts.☺

MS.. lets talk about sex.. you know you want to!

I want to address a subject some may have trouble discussing with their doctors, perhaps even with their significant other.. and maybe even facing themselves.  What I am talking about is sex.  We are all sexual beings and having the diagnosis of multiple sclerosis should not be the end of this part of our lives.  Sex and intimacy may need to be redefined, but it can still be enjoyed to its full potential.

Before I began this post, I did some research and the truth is that most of the reading I did made sex sound a bit bleak and depressing, but it doesn't need to be this way.  The important thing is to maintain an open line of communication with our partner, which is always easier if we are already in a relationship, so for those of us who are single, it's a bit more complicated and stressful.  Here is what I found on WebMD:

It is not surprising that many people with multiple sclerosis report a decline in sexual desire. What with the fatigue, muscle spasms, andbladder control problems, who would want to think about sex? But, there are steps that can be taken to improve sexual function and intimacy, despite MS.

How Does Multiple Sclerosis Impact Sexual Function?

Changes in sexual function can occur as a result of the neurologic and psychological affects of multiple sclerosis.

Neurologic Impact of Multiple Sclerosis on Sex

Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along the nerve pathway in the spinal cord. MS-related changes to these nerve pathways can directly or indirectly impair sexual functioning. For example, the following symptoms can occur as a direct result of myelin breakdown in the spinal cord or brain:

• Decreased sex drive
• Altered genital sensations (numbness, pain, increased sensitivity)
• Difficulty or inability to maintain erection
• Decreased vaginal lubrication
• Decreased vaginal muscle tone
• Ejaculation difficulty
• Problems having an orgasm

The following symptoms can arise as a consequence of MS physical changes or treatments:

• Fatigue can suppress sexual desire
• Spasticity can interfere with sexual positioning or cause pain
• Sensory changes can make physical contact uncomfortable.
• Pain

Psychological Impact of Multiple Sclerosis on Sex

A loss of interest in sexual contact or intimacy may arise as a result of psychological or social issues associated with multiple sclerosis, such as:

• Depression
• Performance anxiety
• Changes in self-image or body image as a result of disability

What Can Be Done to Improve Sex With Multiple Sclerosis?

Talk to your partner about your sexual issues and multiple sclerosis. The most important way of dealing with sexual difficulties is to discuss your feelings with your loved one. When MS begins affecting your sexual desire, talk to your partner. Confiding in your partner deepens intimacy and may help resolve concerns relating to sexual intimacy.

Being that I was not completely satisfied with this explanation, I kept searching and found more information on disaboom.com.  I am only including part of the post since it is quite lengthy:

So how do couples reclaim their sex lives?

a. Communicate. Talk about your sexual concerns and how you’re being affected sexually and in general by MS. Being open and honest about the situation is the first step to resolving matters.

b. Talk to you doctor about the side effects of your medications, as well as medications, like muscle relaxants and pain medications, that can allow for sex more readily.

c. Empty your bladder and bowels prior to sex.

d. Expand your sexual repertoire and definition of sex. Have towels handy should there be an accident.

e. Pursue the “spooning” side position for penetrative sex since it is typically the best option. Alternatively, when the opportunity presents itself, consider sex in water, like a pool, for more freedom in movement.

f. Use vaginal lubricants to alleviate dryness during lovemaking.

g. In situations where arousal is slow or there’s a decrease in sensations, use a vibrator.

h. Try to have sex at different times of day if fatigue is a factor.

i. Practice pelvic floor muscle exercises, known as Kegel exercises, on a regular basis to strengthen your sexual core.

j. Seek sex counseling or therapy for more information and guidance.

k. Turn to MS organizations for more support, especially via messages boards and discussion forums where individuals affected with MS, and their partners, can exchange ideas on realizing better, easier sex.

l. Don’t underestimate the power of your mind. Continue to be active with what mentally stimulates you in boosting your arousal. Think sexy! Continue to woo each other romantically or erotically in setting the stage for sex and appealing to all of your senses.

m. Let your lover know regularly that you still find him or her sexy. Flirt! Reinforcing that your partner is a sexual being will help your lover to believe just that.

More than anything, don’t underestimate the power of turning to your partner for support and reassurance. It may be your ultimate source of tension relief and have you feeling closer than you ever have before.

But now I have to say how sex is for me.  For the most part, I do not fit into the "norm" of what is explained above.  Yes, there are times when arousal is a problem or my orgasms are very elusive and I just want to scream in hopes to get there, but this is not very often.  I can honestly say that the best side effect of having MS has been the quality of orgasms!  How insane is that?  I cannot say it was this way prior to the MS since I wasn't active until a few years after my diagnosis, but what I do know is that more often than not, the way my body responds to the softest intimate touch is mind-blowing.  So for anyone who was recently diagnosed and is afraid that their sex life will suffer, that may not be the case, as it has not been for me.  And remember, I've had MS for at least 21 years.  Not everyone fits the mold so there is always hope!

In case you need to do things in a different sort of way, life gives everyone challenges, including sexually.  Men in their 40's (perhaps even younger) take Viagra or other medications such as this for erectile dysfunction.  Women have trouble with lubrication or arousal.  And it has nothing to do with MS.  It happens and life goes on.  When my body does not want to respond, I no longer become upset but hope that the next time will be better and if it's not, the world did not end.  And the truth is, the more we stress over it, the more our bodies will not react the way we want them to.  We need to learn to not think and let go of fear and try to enjoy the moment.  It's sex!  Sex is meant to be enjoyed between two people so as difficult as it may be at times, try to dig deep inside yourself and find that sexy part of you and share it with someone special.  Why should you do this?  Simple.  You are worth it!