Coping With My Condition

RainCat

Well-known member
How do you cope? For me its all been about believing what the Neuro told me at the very first visit that I DONT HAVE ALS. Then i was left with a condition that's just a daily battle of wits and i have to call the shots. Basically i joined a Crown Green Bowling club, which is a very gentle relaxing sport, so i'm never over exerting my muscles , just keeping them active. Ive met lots of people over this time playing the sport competitively who have become friends and who are always fun to be around. I enjoy the outdoors ...We have a touring caravan so get to see lots of different places, we enjoy the countryside and visit historic places of interest and are members of National Heritage here in the UK. Being active always takes my mind off the condition ...its like its totally not there, even though it is. When we get some decent weather (pretty rare here in the UK) I like to chill out in the garden , a cold beer/ or share a bottle of wine with my better half, some relaxing background music taking it easy watching my kids grow up.Here's a song by Barnsley's very own Kate Rusby (lives about 2 miles down the road) perfect music to wash the dishes to gazing out of the window on a wet rainy morning. Life is for living not fretting ....how are you WINNING the battle?
 
nice girl :)))I also believe that I do not have sinister life threating disease, but rather due to this forum because my neuro seems never reassuring me actively however she always supports benign dignosis ;)i took about a month of break in my speaking therapy (anyway at 4th year it is a good sign that I can cope with daily small problems on my own), maybe it would last for longer, but i do not think i will quit it completely. I still have hard times ahead of me - my daughter most probably would leave in two month far away from home (VERY FAR AWAY, other side of the globe), and that would be dark part of the year which always makes me down...I work a lot. Try to keep minor physical activities - walk, do small works in the garden (mostly kept by my Mom), enjoy my family (when it is possble, usually I do not have even dayoffs or weekends). I write fiction stories, take part in amateur writers contests as a member of jury or as a participant. Recently I found myself deep in japanese vintage garments, so I learn how to wear fine silks 50 years old :)))right now my hand twitches due to awkward working position but I keep on...as much as I can.
 
After my total breakdown last July I had intense contact with the BFS-member I felt closest to, regarding symptoms and character. I personally found it more helpful to talk to the one person I trusted than to steadily ask a lot of people.- Then -still not able to do ANYTHING for more than 15 minutes (except crying and obsessing about ALS), I made the decision to do the "BFS collection" which was due in November. I re-started working for 10 minutes until my hands started cramping up and I lost concetration due to my anxiety, but it steadily got more and more , until I was able to work 4 or 5 hours in a row. I could not sleep anyway so I worked and worked and in the meantime chattet with the twitchers "over the pond". In November I had reached my goal: more than 300 articles made by myself in countless hours despite this BFS *beep*. That was the moment I know I was gonny be alright. After realizing that I was not dying, I got angry at this stuff. So I started to look for strategies to make my symptoms (especially my immense pain and stiffness) bearable. So I made the Fibromyalgia therapy, and learned what my body needs: moderate food, moderate sports and everything that makes me happy. I learned to take life a bit more easy and -most of all-enjoy it, my friends and family.I realized I have a tendency to GAD, so I always watch out for signs of it, to prevent me falling back in old circles. I can honestly say I am a very happy and relaxed person these days. Much more relaxed than ever.
 

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