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.