With all the gloom of diagnosis and symptoms, I though it would be great to try and find some positive aspects in our new companions if at all possible!
We all have been dealt some shitty cards in some way or another and can't just throw them away... but perhaps we can manage to change our view on some things a little and not just "smile and wave" but also stick a middle finger up to the shitty cards.
Especially the 5 days during the Iloprost infusions put things a little bit more in perspective for me personally. Yes, they are shitty cards... but there are always shittier cards than our own - and sooner or later each and every body will receive a bad deck of cards. Our bodies are terminable and not meant to last forever.
so as long as we can manage to keep our symptoms in check somehow, we are fine. And even more so with a positive outlook on things as they are!
So here goes...
Permanent holiday look!
Ssc, the invisible disease. While we tend not to get much sympathy from others due to the lack of obvious symptoms (which would be much worse to be honest, right!?!) I get a lot of compliments on how I look. My skin has visibly darkened (has someone else experienced this??) and I seem to have a constant tan that makes people think I have just come back from holiday. And that without me seeking the sun at all!
Yes, sometimes I might feel a little misunderstood - especially when I am in agony over the frostbite like symptoms I experience even in summer temperatures - but generally this is not the worst of my symptoms. Together with having lost a bit of weight, I certainly feel (otherwise) comfortable in my body and don't have to worry about some white legs sticking out of my dress.
Come on... find some positives in your lives and share them with us! The sun is shining and we want to laugh and smile and be happy!
Any tips on improving happiness are welcome too!
Share what makes you happy!
Love and sunshine! hdx
Written by
hunkyd0ry
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I love this post - I'm still as white as snow - with blue legs and fingers that look worse than someone my nursing friend told me has passed away but I'm here, I'm working part time and exercising.
I appreciate all that I can do, infact my keep fit instructor stays I'm the happiest member of his class (he's not aware of my illness).
13 years ago I thought I had 5 years left - I worried that I wouldn't see my daughter grow up, that my husband would be burdened with me - I won't worry about that again as he had an affair after I was diagnosed- still with him but it's up to him if he's not strong enough to cope if life gets tough then so be it.
I feel stronger - I feel I'm off the normal treadmill that we all get on when we don't appreciate what we do have - everyday is different - I take it as it comes ❤️
Wow! I admire the strength and optimism that emanates out from your post! I know that sometimes underneath it all we feel quite a lot different. But hey... life is still worth living. Keep your chin up and enjoy all that is good! ❤🌞
You are absolutely right - being positive makes everything so much easier! Yes, it's good to get compliments on 'how well you look' - from admittedly misinformed persons - but rather better than saying 'you look awful' !...And the sun is shining, it's a beautiful day.
That all sounds really positive hunkyd0ry, yes, it's about finding your inner calm. I like the simple things in life, a warm summer day, a good book, family visiting, a walk in the park, playing with my little dog, A starlit night, good music, good films, theatre trips, a warm bath,(if I can get out again!), the smell of flowers and newly cut grass, chatting to people, warm cosy nights in by the fire wrapped in a snuggle blanket. All this and much more, just taking time to appreciate things takes our minds off the not so good days, stay well, best wishes x
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