Accepting a BFS Diagnosis

[bettinaybethany]

I'm feeling sooooo frustrated! I was diagnosed with bfs over a year ago. I proceeded to walk through the grieving process as we all do and gave myself permission to plead, to hope, to be angry, to miss my old self, to be angry some more and I thought that I had come to reasonable acceptance. I often verbalize when asked about how I feel that it's the new me. I don't like how I feel, but it's not killing me and I'm pretty use to it. Well, tonight I can't stop crying. I really miss the old me. I have not had one minute since Jan 07 that my body isn't tingling. Waking up in the morning and feeling that perfect calm and stillness is such a distant memory. I guess I'm still grieving. Thanks for listeningGina

 

[Savanturn]

Yes, BFS changes us, also at least me changed a lot. I have found the real value of health when facing the fear of ALS. I used to work much (my dream was built my own victorian-style house on the hill But I found money an property is nothing..I know its sounds like cliche (not sure if in english its the same), but it true for me.

 

[garymills]

Gina,Keep fighting the good fight and keep your head up....you will get past all this frustration, it just takes time.Hang in there,GaryBTW, you're still the same old u, don't let this define you....it is but a single part of u, not who your are.

 

[nameDissin]

I can totally relate to your frustrations and tears. I have also mourned my "old self". These days I'm holding on to hope that a) I will come to full grips with this lifestyle or b) that this will go away in time. I have to say that this month (so far) has probably been my mildest month as far as symptoms are concerned. It has been very encouraging. I'm noticing fluctuations in my symptoms more around my monthly cycle... not sure if you are experiencing this. So, anyway...be encouraged...as symptoms can wane more than wax as time goes by. I've been dealing with BFS for almost 16 months now. One thing you might want to try is keeping a journal of the severity of your symptoms. This has greatly helped me to focus on the positive (as in how many good days I am actually having or should I say very mild days I'm having). Take care...

 

[InkedMama]

PHEW, I must say your post scared me at first..I thought you were gonna say I was diagnosed with bfs and then you were going to go on and say ummm something horrible that NONE of us would want to see ..so YEAH you get the point w/out me having to paint a picture. I know how you feel because I once had this before and it went away. I was NEVER scared the first time because I was oblivious to the "what it coud be's"..This time when it hit me..It TOTALLY altered my life and I lost my husband and almost my newborn baby over it through divorce and custody. Now w/ this hard fight and determination I am beating the anxiety and fear and things are getting better and I have who I love dearly back. Each day that goes by my husband will say "You had a good day..." Without asking I know what that means..It meant he didnt walk in the door and I unloaded on him and told him how I just had no will and couldn't live anymore. Im now able to laugh at things that I wasn't able to in the past. Especially jokes about me being a hypochondriac. They still make me mad b/c no one knows what its like to live in these anxiety bfs shoes unless they live it but it is sorta funny at how eratic and unlogical I was. I still have the "Dee Downer" days @ times especially when I have idle time but I have found ways to distract myself BESIDES self testing.There is a funny song that is out- well the song isn't meant to be funny I think he's speaking of someone he loves and maybe his self confidence but I laugh because there is a part of the song that says I've been spending way too long checking my tongue in the mirrorAnd bending over backwards just to try to see it clearerBut my breath fogged up the glassAnd so I drew a new face and laughedI guess what I'm be saying is there ain't no better reasonTo rid yourself of vanity and just go with the seasonsIt's what we aim to doOur name is our virtueThat song has TOTALLY been my theme song and is now my ring tone because I dont know HOW MUCH TIME I've spent checking my tongue in the mirror..The whole verse sounds like he is talking about struggling with the bfs issue and tongue issues. My hubby was like "Oh lord does this guy think he has it to and wrote a song about it". Cute song and actually the whole song is great and it talks about how we should live and love and forget the small stuff.Wishing you well and good health, LovelyThe artist to the song is Jason Mraz "Im Yours" is the name of the song- good song good beat and definately makes me giggle.