The @rarediseaseday 2015 theme is Living with a #RareDisease http://t.co/mkOqVsW8So
What does that mean to you?
To me, living with a rare disease means multiple visits to doctors and ongoing research to get to the bottom line info about my symptoms. Also infinite patience, hope, faith, self-discipline, and caring for others in the same situation.
The Rare Disease Day 2015 theme and slogan: Living with a Rare Disease - Day-by-day, hand-in-hand
Living with a rare disease can be very frustrating. It takes so many trips to loads of Doctors to get a diagnosis. At first you want to crawl in a hole, then you become pro-active and learn as much as possible. I take it one day at a time, not giving in and not giving up. I am responsible for myself and staying active both mentally and physically is key to me. One day at a time!
To me, living with a “rare disease” is like going through a grieving process thinking about the life you had, have now, and will or won’t have in the future. Things that I did that I can’t do now and never will be able to again, things that I wanted to do and planned to do and now I never will, and the worst one for me is wishing you had done it when you should have…
People you have known for years treat you differently, I rarely get invites to anything that involves walking or dancing as I suppose people assume I can’t do it. It would just be nice to be asked…
WHY ME ? Why choose me ? Why, when life is great and happy and looking forward to the future, plans I/we had, things we were going to do, mortgage free, trips to go on then WHAM sorry but that’s all gone down the pan in a split second…
Now it’s Doctors, specialists, walking aides, wheelchairs, downstairs extension in my own " area" as the stairs are too much for me, adapted cars, chairs, pain, medication, fatigue, no motivation or lust for life, bladder problems, eye and ear problems, sexual dysfunction, hereditary so my boys could pass it on or never experience having a family because the risk is there.
Leaving the best till last. Chronic clinical depression. That is the worst thing for me. Having to watch my children see me falling apart, trying to take my life and ending up in a psychiatric hospital for 2 months scared to talk to me or frightened of what I may say or do when I am at my worst. Knowing that there is no cure or treatment and wondering why you have just spent about 10 hours of hospital transport, waiting to see a “specialist” then waiting hours to be taken home after being told no cure, no treatment blah blah blah.
I often wonder how a person becomes a specialist in a rare disease if there is no treatment, therapy or cure. Perhaps they specialise in just that, telling people that there is no treatment or cure. Basically to me it all sucks…
That’s what having a “rare disease” means to me…
Well said, Juditha and all! Just trying to do the best I can and stay as positive as possible, as this is my new "normal", whether I like it or not! Thanks for sharing, Alan!..., ;o)