Lack of Support for BFS Sufferers

[Spartacus]

Hello everyone, I was just having another thought and figured I would share it with the forum. In my experience with BFS, I have found it almost impossible to get proper support. Family, friends, professionals have all been (for the most part) completely useless throughout this ordeal. Now, don't get me wrong, I know that everyone is trying to help as best they can. The problem is that much of the "support" I have received in the past 9 months has actually done more to upset me than to help. I'll give a few examples: 1) I tell my chiropractor about my twitches. He says "oh yea, my eyelid twitches a couple of times a month". In my head I responded "boo hoo, every part of my body twitches every second 24/7. 2) I was speaking to a Neuro-Muscular Disease Specialist back when *LS was my disease of the month. I showed him my wagging ring and pinky finger on each hand and he said "so what, look at this". He put both of his hands out and his fingers were jumping all over the place. I said "holy jeez, that's bad", he said "I'm doing that on purpose". This meant that he thought I was wagging my fingers back and forth on purpose..... what a d*nk! This is the same Neurologist who wrote "patient cannot accept the fact that he does not have a serious neurological illness" on my file. To me, this is a freaking serious neurological illness. I'm 1/4 of the man I used to be!!!!!3) My father has insisted on calling me every day for the past 4 months to make sure I'm ok. This is touching, I know. One of the most common things he tells me to make me feel better goes a little something like "Son... I wake up every morning to a sore back or a stiff finger". So... in my head I think "yea... you're 60, you're fat and out of shape and those pains go away after you stomp around a bit". The mere fact that your symptoms can easily be explained away by very simple and logical reasoning p*sses me off to no end. 4) I was staying at my mother's house for a week and she came in to wake me up in the morning. She asked me how I was feeling. I said "well... my hands are really stiff, my ankle is weak and there's something wrong with my throat", to which she responded "well, James, look at my ring finger here... it's stiff from me mowing the lawn and working in the garden yesterday". In my head I'm thinking "WTF is wrong with these people????? All this sh*t is happening to me for no reason. It's not because I worked in the garden yesterday!!!!"5) I went to my first CBT Psychologist and the first thing she taught me is breathing exercises. She said whenever I started to get worked up about something I should breathe. I said... "Why? Is deep breathing going to make me stop twitching and tremoring, aching and moaning?" She said "no, it will help you calm down". I said "I'm not going to calm down until all this sh*t stops happening to my body."6) I went to my GP who has been completely useless for the last 9 months. I showed her my hands which open and close in small ratchet like increments. She responded "your hands aren't actually doing that, you just think they are". I responded... "WTF?????????"I guess my main point here is that people don't seem to understand this condition. All these things aren't happening to me because I'm 60 (I'm actually only 29), or because I'm fat, or out of shape. They aren't happening to me because I worked in the garden yesterday, or because I am wishing them upon myself. These things are happening to me for an undetermined reason and unless you have experienced this yourself, receiving meaningful and useful advice from someone is almost impossible. This is precisely why this forum is so useful and helpful. I'm sure I'm not the only one who has been annoyed by this???

 

[Magnezum]

Yes I agree very frustrating. My neuro told me maybe I was exercising too much. I am like I doing a little running to stay in shape, I am not training for a marathon. I tried to show him my twitches so he looked for like 5 seconds. I am somewhat of a keep it in type of guy..I have not told friends or family other than my wife. So I have avoided the hey we have this too talk. So I just keep on keeping on...waiting on new spots to twitch and wonder why.

 

[TwitchyMD]

I could not agree more! But you know, they cannot understand. Unless you experience something that forces you to actually worry about your life seriously, you cannot advise someone in this position. I do not share that with others except for my wife because I do not want to scare my family and mainly..I know they cannot help me.

 

[SecretAgent007]

Spartacus,I can sympathize because I lived it myself. I have to admit though that this reaction from my GP and neuro is partly what I have to thank for my turning to alternative medicine. Had that not happened I do not belive I would be BFS free today. I might still be clinging to hope in the failed western model. This post illustrates a very important point about perspective. You are essentially highlighting the fact that your support (friends, family, doctors) have not experienced what you are experiencing so they cannot relate. Their attempts to relate fall flat because they clearly demonstrate that they clearly understand where you are coming from. Some of them are sincere in their attempts to try and relate, but others are less sincere and rather cold in their attempts to relate (more mocking than relating). Does this sum it up?I'd like you to consider now the reverse of that relationship in regards to your point number 5 as an example. You percieve the CBT Psychologist's suggestion to do relaxation breathing exercises to be a fail because you don't see how your goal fits in with what she is suggesting you try. Here is the catch though. Have you given relaxation techniques like breathing exercises a fair shot? Have you done it on a regular basis and tried to integrate it into your daily routine to see if it can actually have a positive impact on your condition? You seem to be assuming it's a waste of time, but have you actually experienced the activity for any duration of time that might actually make a difference? If you have not then are you not making an uninformed relation similar to what you are complaining about from your support people? Out of all the examples you gave it sounds like she is the only one offering you an actual option. Everyone else was just trying to mock you or make you feel better.I actually liked using your number 5 as an example too because I was once a skeptic on the relaxation techniques and breathing. I'm an engineer and never paid any attention to that sort of stuff. Then BFS happened. My GP failed me. My neruo failed me. My life was spiraling out of control. My mom had been harping on me to try alternative. Blah blah blah. I was at the end of my rope and half did it to get her off my case and half did it as a 'Hail Mary Pass.' My life is forever changed because of the things I learned and experienced on the alternative route. Not only do I now integrate relaxation techniques into my every day life, but I also appreciate and understand much more about how and why they work. My over analytical mind needed to be throttled back. I now know from my personal experience the value of mental discipline when you are an engineer and tend to analyze everything too much. Until I had that experience though, I was judging it from a perspective of ignorance.

 

[MarioMasher]

I agree with this 100%, but I also would ask you why you think you need support. What does support really offer, anyway? Do you really need somebody else to help get you through the day? In the end, the longer you deal with BFS, the more you will realize that you don't need support because you can be your own support. It is really as simple as that. Yes a support structure is great, and yes it makes you all warm and fuzzy and makes you feel like you aren't alone. But in the end all it really does is make you more dependent on it. It just makes you weaker in the long run. The way I look at it is this: I can deal with BFS much better than anyone else can because I am the only one who has it and who understands it. So in the end it really comes down to f support. I refuse to let my happiness depend on other people making me feel better about myself. I am perfectly capable of offering my own support.

 

[Spartacus]

You all make great points and, to be fair, I didn't give deep breathing a fair shot... But my excuse is that I am also having breathing problems and deep breathing just reminds me of that. Mario, you make a good point. The best support I can get is on this board but I can't hang around here forever looking for answers because there don't seem to be any. Mitra, because my wife begged I have signed up for cbt therapy again with a neuro psychologist. We'll see how it goes but to be honest, I'm a skeptic. After 9 months of my wife dealing with me acting like an idiot her best support is telling me she'll leave me if I don't quit it. Lol. F support.... I'll keep that in mind. Ugh I just read Ben affleck is the new batman... Didn't they learn anything from daredevil???

 

[Arkansawyer]

Lol, at Ben Affleck as Batman the guys at my local comic shop will be riotous, I know how you feel man, people try to help but they can really only do it from their own frame of reference. BFS just happens to fall outside most peoples frame of reference so their attempts to help come across as clumsy at best. In many ways it is true that you will be your own best support but it does help to know that people care, and that some of us out here have even been where you are now or are still there to some degree. It is very hard to deal with the fear that BFS can bring, and the loss of security that it represents for most of us. I think that as a community the best thing that we can do is to learn to accept the benign nature of our condition, easier said than done I know. Honestly I am in the middle of a pure panic day, I just have to tell myself that it is not what I think it is.

 

[BlueWolf92]

I wouldn't say I am annoyed by people who don't get it. Until you walk a mile in someone's shoes, you don't understand them and that goes for physical, mental, emotional, whatever conditions they are going through. So, other than the folks on this board, I don't expect people to get it. I am very thankful I have a sister who keeps me sane when I go through my OMG times. But other than that -- just don't expect it.