Coming to Terms with a Loss of Independence

MultiplesSclerosis (MS) sucks. For many different reasons, it just sucks. It is that simple. No one out there is currently saying, “wow, I am so glad I was diagnosed with MS, it gave me so many awesome abilities!” unless they are exercising the sarcastic part of their brain. At the same time though, how you choose to look at your personal situation can greatly affect the quality of your life. I am a big believer in self-fulfilling prophecies; if you wake up in the morning and tell yourself it is going to be a horrible day before it even starts there is a good chance everything is going to seem terrible like life itself is moving against you. Granted, I am rarely able to wake up and tell myself, “today is going to be awesome” without MS successfully popping up and getting in the way but nonetheless I can still (usually) seem to affect my mood and how I react to these things.

That being said, there are some things in my own life with MS that I have still not learned how to deal with properly that I know (after talking to so many people about it over the years) many others are struggling with every day regardless of how long they have had MS. One of the main sources of my emotional distress is my continuous loss of my independence. People say that MS is constantly trying to take things away from us so our seemingly everlasting job is to do whatever we can to stop it from doing so (slow the process of the disease/long-term disability). But inevitably, we tend to lose a few things before deciding that it is time to do something about it; that first loss of being able to do something (anything) can be a relatively stark reality check. Like many others, I have a pretty aggressive case of MS so the last 6-7 years of my life has felt like a constant tug-of-war over my independence. Sometimes I feel like I am winning and sometimes I feel like MS is winning.

Thing is, we live in a time where most of us have access to an abundance of information. Not sure what something is? That smartphone in your pocket dwarfs the largest collection of encyclopedias, thesauruses and dictionaries you have ever seen! One minute of your time and you can do what would have taken you one hour 20 years ago! This means that finding a solution to a problem that MS may bring about is easier than ever so learning about new treatments, medications, diets, exercises, studies, alternative therapies and anything else that may improve your life with this disease is not outside the realm of possibility. On top of this, the amount of information that is out there for us to find is growing every day! So personally, a lot of my life is dedicated to learning about new ways to stop MS from taking things away from me, regaining what it has and strengthening what it hasn’t.

Even still, as I continuously experiment with new ways to possibly better my health, I will surely end up spending time trying something that either does not help or is actually counterproductive to achieving my goals (trial and error) which means MS may find the opportunity to do some damage causing me to lose the ability to do something on my own. Ever since I was a child I have tried my best to be as independent as I could and to this day I still find it difficult to ask for help. So when MS seems to be constantly trying to take my independence away it puts me in a frustratingly uncomfortable situation; having to continuously ask for help. I have come to terms with the idea that I will (for example) probably need help using power tools even though I grew up building things as a DIY guy. I can’t really do that stuff anymore and I am mostly ok with that but what I am not ok with is realizing one day that it is taking me forever to simply zip up my jacket or tie my shoes! Something that once took me a few seconds and that I have been doing all my life has now become an actual activity and as a 26-year-old male who can be extremely stubborn? There is no way I can bring myself to ask for help with things like that which means I have to learn how to deal with the stress that results from struggling to perform something that was once simple but is now a difficult and tedious activity.

One of my main methods of dealing with this stress is to take a deep breath and tell myself, “it is ok, calm down, you got this, take your time, slower is faster” which tends to be a lot less stressful than when I am fumbling with something and cursing up a storm in my head. Self-fulfilling prophecy. You can either tell yourself that you will find a way to do something or tell yourself it is impossible regardless of how simple a task you are trying to perform. Now, I am certain there are therapist out there who specialize in teaching people how to cope with the many struggles of a chronic disease but because I have yet to get myself to see one I often end up in a deep depression regarding the realization that a piece of my independence has slipped away and most the time it takes me ages to come to terms with this reality. I know this is not healthy but I have not yet come to terms with the idea that I need help with that. Stubborn pride, my double edged sword

Do you find the loss of a piece of your independence especially troublesome? If so, how do you come to terms with that loss? Have you seen/do you see a therapist? I am personally curious so please share below!

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