This is a very new sensation for me, but I have a greater appreciation of EVERYTHING. Especially the little things. Whilst drinking a coffee, door wide open, I was suddenly overwhelmed with an appreciation for living in the deep French countryside. I imagine inside my house is a lot like yours, but merely going outside is like going on holiday. Whenever I want! I appreciate finally finding a girlfriend and someone who is cool with how I am, who has her own problems, we help each other. I really appreciate my dogs, they gave me something to look after that wasn;t myself, distracting me from my own problems back in the day. Plus all the cuddles, cuddles are good.
I have really struggled alone for over 3 years, especially the last 15 months since receiving diagnosis despite not being alone for the last 9 months. But I have accepted a lot I was fighting. It was a losing battle, and I think you are better to accept it than fight it. But the sun literally just has come out again after the winter and I am looking at a new life with great acceptance and appreciation. I feel I wasted a lot of time, despite achieving a lot in the 7 years before my wheelchair. Nowadays I still put on occasional concerts at my house, which honestly are a huge event for me. Staying up past 9pm is unheard of nowadays. I am only 37.
I am super happy I have found a place where I can write to people who get me. I am literally venting years of pent up feelings as I had noone to talk to, but hopefully its helping others make important necessary changes to their lives too. Learn to appreciate the little things.
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LessThanRich
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Agree with you about appreciating the little things. As I messaged you, I was able to go to the park with my daughter and wheel around, was AWESOME! Was like a holiday. Have enjoyed talking to you and having more insight into options, will have to video chat soon.
Whenever you like. I am generally at home! Just take into account time difference! I am super pleased at what you achieved this week, its the first step to a new life
What a wonderful post to begin the day! Rich, I wholeheartedly agree. It's a revival of being alive and allowing yourself to live in the moment. I am reading your post and watching the morning sunrise with my favorite dark roast coffee in hand and filled with wonder and grateful of being alive. AMN can be transformative.
How about you let me vent and take from it what you want, otherwise ignore it. The amount of good that has come out of my posts so far is great. I am only talking to severe sufferers like myself. Don;t reject my opinions cos you never know how your AMN will evolve and one day suffer like me.
If you could for a second get out of of your own 'suffering' to appreciate and more importantly, respect others that have a different opinion than I would agree.
Rich, you might not realize this, but your comments come across as rather rude. Jason has been a member of this forum for several years, and you are in no position to discuss his or anyone else's level of "severity" in dealing with this disease. There's no reward for being further along than anyone else, nor do any of us look down on another group member who is still at a stage where they do not require as much assistance.
Absolutely not, but I am appealing to serious sufferers to try and make a real difference in their miserable lives. If my posts aren't relevant to him he can just ignore them. I am not being censored.
You play the victim very well Rich. You have zero clue, nor do you seem to care or empathise what others on the site deal with other than driveling in your self pity. IF anyone voices a different opinion you come back to your own suffering and attack them. You are very 'American' in voicing out that your way is the ONLY way. Can't we all get along?
You speak with so much pessimism and judgement. However, what I would consider miserable is dying with adult onset ALD - not AMN!
By the way, I think the French expression (and what your girlfriend conveyed in her post to describe what it appears like when talking to you) is "Parler dans le vide". To waste one's breath. I wholeheartedly agree!
Do you consider yourself to be handicapped? If you don;t, then ignore me, when you do read my posts. My life is miserable, and its really bad. I am happy for you if it isnt so bad.
As an old hand at AMN now I hope I have it all sorted and I have something to beat each and every symptom that poses me a problem.
and most recent:
I am super happy
By the way, here in the states we don't consider ourselves "handicap" but persons who are disabled. Yes, I have a "handicapped" placard for parking and yes, I am disabled from work accepted by my long term disability insurance carrier and the Social Security Disability Insurance both the very first time which is a feat in the United States so don't throw me your ode to suffering and woes.
And its both, my life is miserable, noone would deny that, but I have a load of stuff help me get through, and I am super happy and trying to put a positive spin on a desperate situation..
13 years ago I met with a disability therapist. Are you kidding me? I have accepted AMN and Addison's Disease (2 rare diseases) for 40 years! Do I allow myself a 5 minute pity-party? You bet but I live my life with positivity and mindfulness, That's why I find some of your posts toxic. You should read other posts besides your own. "They are meant for people like you". Just listen for a change.
What about all the ALD boys and their parents that truly 'Suffered' from this disease??We're lucky we can banter, share, and argue about AMN on this forum...But for the grace of God (or, whatever you believe in) we all go forward; in a wheelchair, cane, scooter, or whatever...we're truly blessed. Prospective, man!
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Developing Addison's in 40s
Carrier and trying to start a family
Is this progression or regression?
Upcoming Doctor Visit
