Love and MS – a slightly bizarro Valentine-esque post..

Real quick, I’m not sure if I mentioned it here, but next month I’m scheduled to see a new neurologist. I hope it goes well. I really hope that this one is up for having a little bit more discussion than just telling me to take drugs and cross my fingers.

MS can be kind of a lonely disease. Because it is so individual, not even affecting other fellow MS’ers the same way, it proves to be challenging to communicate what is going on both emotionally and physically. It makes us question ourselves, and our sanity. It can be an isolating factor in wading through treatment options even. What works for the goose, doesn’t necessarily work for the gander, and it gets tiresome trying to second guess what will work for you long-term and what won’t. It can be overwhelming at times.

I’ve been able to maintain pretty well I think, as long as I play by the rules. I’ve had a few really bad days too, which is just par for the course. It is really hard sometimes though. Its as true of a balancing act as you can find I think. Personally to maintain my spirit, (which is so important – regardless of what you are told, attitude and perception can make or break you) I still need energy and inspiration in my life to facilitate some kind of creative expression. I need it for my well being, and for my sanity… everyone does.. MS or no.

Mind you, that finding forms of inspiration and creative expression even for the “normal” can be somewhat of a task. But when things aren’t normal, its just as – if not more – important. Finding chances of creative expression doesn’t erase my health issues. It won’t serve well as a long-term band aid to cover up the problems, but it does improve my being and is needed just the same. It is needed to gain energy. Creative expression is at the core a way for me to feel alive, and I need it to maintain, to keep going. I need the energy to be able to give energy back, because that is what fuels me. We were never meant to be stagnant beings. We need to grow, change, learn, give and take fluidly, despite our tendencies to work towards finding an auto-pilot-able routine.

But its hard.. Its no wonder why people give up, and go into denial about the whole thing for different periods of time. It can take so much out of you to keep up. In addition, it takes some real grace on the part of those around us to be willing and able to handle the ride that MS takes us on. I’m very lucky to have the husband that I do. As crazy different as we are, he seems to understand that. I hope he will continue in the future.. 🙂

Unfortunately I’ve read, heard, learned so much lately about how often MS leads to divorce. I think it can be an incredibly bumpy ride for many, stressing and stretching even the healthiest and loving of relationships. There are the obvious issues for the individual with the health problem. Stirred in with our own normal – unrelated personal baggage and idiosyncrasies, now additional we have further fear, guilt, pain, a sense of blame, or inadequacy borne from whatever the health issue in question is. In this post I relate it to MS’ers, but really it can describe multiple diseases and health issues. The one who is “unwell” is now in need of a totally different balance in the kind of support they need.This can throw our loved ones for a real loop. This can sometimes no longer be what our loved ones imagined they “signed up for”.

The MS’er’s needs have changed, but in knowing that a good relationship cannot be one-sided, its so important that at the same time – we prove able to step back and see things from our loved ones perspective too. We will often figure that since they are able to escape the disease.. that it doesn’t affect them as much, but this is incorrect. MS is like a water droplet in a lake. It not only affects the initial contact point (the individual), but it has waves that radiate outward that cause change to those around us as well. The closer they are, the more they will be changed by the ripple.

The MS’er still needs to feel needed in a relationship, we still need to feel viable, we still need to be encouraged, but now we have some actual limitations to complicate matters. Our “spoons” available are less in quantity, and we still have to accomplish the same but now with less. In some cases goals have to be adjusted, which can be a painful realization in itself.

Its how all parties involved react to these limitations and changes that determine our path from there.

It is possible for our loved ones, to feel just as hopeless if not more hopeless than we do. They are unable to really do anything that really “fixes” anything for us. They can help, but they cannot fix, and that is pretty hard for some ego’s to handle. We aren’t all good at balancing, and often extreme reactions occur in both ourselves and our loved ones.

An example of an extreme reaction could be where they just go about business as usual, thinking that if they ignore the limitations, that it will work itself out, or force the situation to not be true. This may incite the person with the health issue to either become indignant, questioning how much their loved one actually cares…. or to follow suit and ignore their own problem until it becomes so unavoidable that “faking it” is no longer plausible.

On the inverse, a loved one may react to the news by babying the MS’er. While this may be nice at first, it isn’t a realistic set-up for a relationship. For the one with the health problem, they may begin to feel worthless, they may feel more like a burden, may begin to feel almost trapped by their loved one no matter how sweetly they are treated. It may actually work the opposite as intended, and sap energy and life from the MS’er. Just because we have limitations, doesn’t mean we can’t still do things. If you take it all away from us, we will wither. For the loved one who is using this tactic to cope, it will eventually lead to small pangs of resentment, at now having “extra duties” which if allowed to grow, can cause definite problems.

Its an extremely hard balance for all involved to strike. There is no auto-pilot regime that is able to easily get through all that MS (or any other sickness) has in store for us and our loved ones. Just like everything in this life, it is constant work, and it doesn’t let up… and just like everything else, its how we react that guides our life more than the issues we are given to deal with.

A note from Debbie…

Below is a comment I received from Debbie, a fellow MS’er. I have moved it off my “about” page to here so that you all can read it, because I think that it is important what she’s trying to do. Sometimes awareness even needs to be refreshed in those who are actively living with the situation. Not only those who don’t know anything about it. I will be adding her link to my “MS Bloggers” link list as well…

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Hi,

My name is Debbie and I have been diagnosed with MS for approx. 10 years now and in the last 2 years MS has really started to have an impact on my life. This year I decided not only to start a team for the MS Walk but also to start a blog which will chronicle my life with MS from the beginning till I catch up to today. Though as things happen in everyday life I will interrupt the story of the past with a look into the present and updates on my team for the MS Walk. My blog is called MS and Me : My Story . I would really appreciate it if you would place my blog on your blog roll and I will do the same for you. I figure the only way to break into the MS blogosphere is to start connecting with and through other bloggers. I am also going to paste the letter I sent out to family and friends to start fund raising, right below this, and hopefully that will give you an idea of where my blog will be headed for a little while. Thank you for your consideration.

Debbie

Dear Family & Friends,

Last year I walked in an MS walk for the first time and SHAME on me. Shame on me because I was diagnosed with MS approximately ten years ago now and this was the first time I ever done anything active about it. I would give a little bit of money through the United Way but I never did anything else. I often thought about doing something but there was always a reason not to. Something else was going on; it was too much effort to put together a team; I didn’t want to bother my friends; I hate fund raising; I forgot; and any one of a long list of other mundane excuses. The biggest reason, however, was that, inside, I was really scared.

When I was diagnosed, I was told by the neurologist that the type of MS I had at that time was relapsing remitting. That meant that I would have attacks, but I would recover fully between each attack. Since I had only shown sensory symptoms so far, and no motor involvement, I would likely continue this way. And for a long while I did. I had periods of numbness here or there, maybe some altered temperature sensation, but nothing that I considered more than a mere nuisance. I continued to work at my job as a paramedic without my coworkers being any the wiser. The worst thing that MS did to me until that point was almost keep me from adopting my
beautiful daughter, Ksenia, because of a Russian law which stated that people with certain types of MS were not allowed to adopt from their country. Luckily, it turned out that I hadn’t been diagnosed with one of those forms.

After this brief scare that MS might actually have a real effect on me, I just went on with my life as normal. Deep inside, though, I always knew that there was a chance that it could all change in a minute and I just didn’t want to think about it. Hence, my previous lack of involvement with anything related to raising money or awareness for MS. If I became involved I would have to interact with people who hadn’t been as lucky as I had and watch them deal with MS-related challenges and disabilities that I pushed from consciousness and always hoped to avoid. I was afraid that it would be like seeing into my future and, as I said earlier, I was scared.

Well, in the Spring of 2008, everything changed. I finished a shift at work, planning to return to duty in a week and a half. Little did I know that would be the last time I’d ever ride a paramedic unit.

I was off for a week’s vacation in Ocean City with my husband, Ed, and our two kids, Ksenia and Gabriel. The second day, I felt like I had to pull myself up the stairs in the condo. I could tell that I was having trouble walking, though it took others a little longer to notice. My right leg became so weak and slow to respond that I no longer trusted myself to drive. It finally got to the point that we went to the local emergency room.

That evening was the beginning of the hardest period of my life to date. Of course it was assumed that the MS was causing the symptoms and with proper treatment they would go away as they had in the past. That night, however, we also found out that I was pregnant with our precious little girl, Eliza. So now instead of receiving the typical treatment, I was told that I could not be treated at all because of the pregnancy. I deteriorated quickly.

I went from having difficulty holding my nine-month-old, to the inability to feed him due lack of arm strength and endurance. I went from having trouble walking, to basically being an invalid, stuck on the couch, if there was no one there to help me. I needed someone to help pull me up off the couch and I didn’t even have the strength in my legs to lift my feet over the dividers on the floors between rooms. The only extremity I still had a fair amount of use of was my left arm. My mom drove a two-hour roundtrip every weekday for many months to take care of my son for me while I laid on the couch and couldn’t even hold him because I was afraid that my arm would give out at any time. One thing that still breaks my heart about that period is that I was unable to assist my daughter, Ksenia, is the search for her high school graduation dress.

I was lucky that early in my pregnancy I met with a specialist who convinced my neurologist that I could be treated. After two rounds of treatment and one hospital stay I began to slowly improve with multiple setbacks along the way. Eventually, we had a happy, healthy, baby girl, and I regained about 90% of my functionality. However, without 100% recovery, I could no longer perform my job as a paramedic. So, after fifteen years, at a job I loved, I was forced to retire on medical disability.

This is a road that is far from ending. While in California this summer, I relapsed. Though thankfully not nearly as severely as the earlier attack. As I sit here and write this and watch my son twirl in circles, I still consider myself one of the lucky ones. Now, however, I know that as one of the lucky ones I must do something to help with the fight to cure MS. My hope is to help secure a happy and positive future for myself, my family, and all of the others affected by this horrible disease. My little ones need their mother and I would love to continue to be an active participant in my children’s lives.

Many strides have been made in MS research lately, including the release of a new drug for the treatment of leg weakness and many other hopeful experimental therapies not yet available to the general public. Without support and money from people like you and me, none of this would be possible. Because of our support the future holds much more hope for me, my family, and many other families like us.

I have started a team called Next Steps to walk in the Columbia 2010 5k MS Walk. I am asking, hoping, and praying that you can find some way to become involved. You can join our team as a walker and sponsor, as just a walker, as just a sponsor, or as a volunteer at the event. Please go Next Steps’ site at Walk MS:2010 or to my personal page to sign up to do whatever you can to help. Additionally if you have any friends, co-workers, fellow church members, corporate leaders, etc. who you think might like to join or support us, please pass this on to them. We can use all the help we can get!!!

I would like to thank you ahead of time for any help you are able to give. Anyone who is available after the walk is invited to our house for a celebration of the impact we have made!