Taming The 'What Ifs'

[rumzcaneconundrum]

I think we should start a thread on How do we control the what ifs. I have been on this site for 3 years and 5 months, and yes, still counting. I don't post much anymore, unless I know I can say something positive to possibly help someone. I thought I would come back with this little thread. I still come around and read everyone's post. It seems even for us old timers if we could somehow offer support on how to control the what ifs, this BFS stuff wouldn't be so scarey. Annoying as he**, but not too scarey. Yes, I have had this awaiting to approach my 4 year mark. I still twitch everyday, just learned to live with it. I can't say I have learned to ignore it, like some of the old timers, but just learned to not allow this stuff to consume my every thought and life.As I read most of these posts, it is all about the what ifs. Even if we get use to it and accept it, someone will post , possibly an old timer about a new hot spot. A hot spot, that maybe they have never had before, or possibly a hot spot that is out of character. It is one that is too long, too strong, too weak. This list will go on. The thoughts of this must be it, this twitch has lasted 2 weeks, I must have the real deal.I think if we could all somehow learn to control the what ifs, we would be so much better off. I certainly cannot tell you I enjoy this disease or whatever it is. But, I can tell you it has helped me deal with other things in life, whether it is emotional or illness. I try to channel my worries about personal issues or illnesses or just stress/anxiety or whatever. I always say to myself, well at least I haven't been diagnosed with ALS. There are people out there that clearly have, and some how they learn to go on. Then when I find myself worrying, I say even if I do ever get diagnoses with something terrible, ALS, cancer or whatever, why in the world am I wasting my time now before I am truly sick with an official diagnosis. Life is precious, time is precious. The truth of the matter even though we have this BFS stuff, whatever it is, we are not immune to other illnesses, or even ALS. I am sure people who have had BFS have developed ALS. Just because it happened, not because BFS prones us to ALS.I think at this point I am just rambling, I was just trying to make some point...I am sure this point has certainly been posting before, We must learn to not focus on the What ifs.Smiles and Hugs to everyone....Thank you old timers for all the support you give to the newbies. I remember how devestating that first new persistant twitch was. Now I still get them, haven't developed any weakness. It is truly an emotional game you must learn to conquer.Tee

 

[Krackersones]

Tee,I am glad you are still around and willing to post. Experience is priceless. I have been battling bfs or idiopathic demyelinating neuropathy (depending on what neuro of mine you talk to) for a year now. I agree with your mindset and try to adopt it myself. But I also struggle with trying to understand what is going on (i.e. the cause) since I feel it must be discoverable. There are so many clues out there but it is difficult for anyone to find it worth their time to really study it and the cost in time, money, and stress in being tested and examined may not be worth the result either. If I did not need a drug (klonopin) to feel halfway normal, I could probably let it go somewhat. But going from being totally healthy to needing a drug to sleep and function and not feeling the same every minute of the day makes it hard to not want an explaination. Yes I have been give a possible explaination (demyelinating neuropathy) but I still have not explaination of why I got it and what the course might be.Krackersones

 

[rumzcaneconundrum]

Jro, I know exactly what you are saying. It is very difficulty to accept the "I don't know", don't worry about it, it is benign. It is a matter of feeling out of control, not being able to control what your body is doing. But, I look at it as there is some things I accept that I have no control over, and I take risks without answers, so why not this. Every time I fly, and leave my safety to the pilot and air traffic controllers and plane mechanics, I do that. Everytime I drive I accept that I am not in control of other drivers or other circumstances. Also, every time you take a medication, I don't care what it is you take risks that you have no control over. I try to look at it the same way, it is what it is try to deal with this annoying condition for what it is. If I every come down with a catastrophic illness, I would never forgive myself for stealing the healthy time from myself. Believe me, I am certainly not lecturing, I still struggle all the time, it is just the way I learned how to deal with it. When I am allowing my anxieties to take over because I am having a problem accepting the what ifs, I find myself losing out on a lot of healthy and good things in my lifeBefore when I would get annoying hotspot, I would obsess over how long it has been since I have had it, how long will it keep going on. I use to be able to tell you down to the minute how long a hotspot was going on. Now, I note it and just say I'll be glad when that one is done annoying me, and try to move on. If you start focusing on every twitch, it seems to be a relentless merry go round, then you start focusing on "am I weak", Can I do this, Is that a dent. The obsessive thinking gets a hold of you and takes control of you. You don't have any control over the twitches, but you do have control over how you deal with them.Good Luck, time does help. It just takes alot of mental work on your part.Tee