Some things I am
grateful for since being diagnosed with ehlers-danlos syndrome.
When I was first
diagnosed I had a small meltdown...OK a big melt down. Now, two years
on, I am learning to adjust. I am proud of the way I have adjusted. I
have my ups and downs but I am grateful for the little things in
life. I'm even grateful for some things I've got because of my
illness. I wanted to share some of them with you. After all we could
all do with a little bit more self appreciation.
1.Knowing I am not
crazy! This is a big one for me. Since I was a child I knew there
was something different about me. I knew I wasn't like all the other
kids. I remember being quite a small child comparing myself to other
kids and knowing I was not like them. I had aches and pains. I was
more tired than other kids. I took longer to recover from simple
medical procedures. For me getting a diagnosis was bitter sweet. I
felt vindicated, like I wand to shout “IN YOUR FACE!!” at anyone
who had ever doubted me. But at the same time I still wasn't happy.
The realization dawned on me that by being right I actually have to
live with a medical condition for the rest of my life. But one thing
I knew was I wasn't a hypochondriac, I hadn't been making it up and
I am not a drama queen. After the initial shock wore off I was super
grateful for that.
2.I learned a lot
about friendship. Some people simply don't know how to cope with
your illness; you have to learn to be OK with that. Some people
can't figure out a way to be supportive when there is no solution.
You might drift from friends you'd have least expected, but you
might find that others become your besties. Remember the people you
love the most are worst effected by your situation. They are
fighting their own battle coming to terms with what you're fighting.
So cut them some slack. I believe they're doing the best they can.
If they're not giving what you need, you cant change that. You just
have to accept it. Sometimes you get the best support from the least
likely places, friends that you didn't consider to be your nearest
and dearest step up to the plate and are there when you need them
the most. Be brave, share how you feel and your struggles, you never
know who might surprise you. Maybe those further from your heart are
able to look more subjectively at your struggle and offer the best
advice. Who knows, all I know is my buddies are the best and I love
them!
3.I learned what I
love. When you have a limited reserve of energy you learn to
prioritise your day. You learn to allocate a portion of your energy
for things you want to do. I've learned to care less about the
little things. At first I was always frustrated that there was stuff
out of place or the dishwasher needed emptying, but after a while I
realised these things can wait until the energy comes. They don't
really matter in the grand scheme of life. Nothing bad will happen
if you don't make your bed. What matters is how you choose to feed
your soul. I learned to save my leftover energy for the things I
love, like being creative, cooking, date night and visiting the
amazing people I love. Become resourceful, you got this! You can
find other ways of doing what you love
4.I have learned how
strong I can be. Granted I have no choice. My options are fight like
a wildcat or not, and become owned by my condition. Its up to me.
Its Hobsons choice, neither option sounds that appealing, but faced
with the two choices fight and be strong is the obvious one. Its not
always the easy one. Its OK to get mad and shout and feel like
rebelling against your treatment. Sometimes you've just got to let
that crap out. Then dust yourself off and carry on fighting. When
people say things like “you're so strong, I wouldn't be able to
keep going like that” I often want to shout “of course you
would, you dumb ass, you'd have no choice!” , But instead I hold
it in and smile. Then, once I've calmed down a bit, I think damn!
Maybe I am strong and maybe its OK to be proud of how strong I am
5.I'm grateful for
the realisation that I was grieving. It took me a long time to
realise I was grieving for my old life and the old me. I couldn't
describe how I was feeling. I was sad about what I lost and angry
about what my body was doing to me. I missed the carefree person I
was and resented the wreck I had become. When I realised what I was
feeling was grief I could start to process it and let go of the old
me. I Allowed myself to begin repairing the broken bits. I stopped
being so sad and eventually things started to make sense again. I
felt that the colour came back to my life and I could start to enjoy
the little things again. Its OK to grieve, just not forever. Its a
process you have to complete, almost a right of passive for the
chronically ill. You can make it to the other side.
6.You can use your
illness as an excuse to get out of stuff you don't want to do! Its
great! Of course its really annoying when you actually can't do
something you wanted to do because of your illness, but every now
and then you get a little bit of payback in the form of a ready
made excuse. Its OK to say I cant do it. I have been really bad at
this, my mind is fiercely independent and stubborn (my body isn't).
Admitting I cant do something doesn't sit very well with me. But
sometimes I have to hold up my tremouring hand and say 'I'm out'.
Sometimes it isn't that you have to miss out, sometimes its adapting
and finding a different way of doing it. Admitting you need help is
the first step to finding a solution.
7.I'm grateful for
not caring what others think. Truth be told I've never really cared
too much about what others think of my appearance. I wear what I
want, I have odd hobbies. I'm comfortable with myself. Now I have
mobility aids and splints and that's something I cant change. I can
change how I feel about them though. When I first got my glasses
(before geek chic was a thing) I picked a pair of big purple ones,
my husband said “ if you gotta wear them you might as well own
it!”. So I own it! I've adopted the same approach to my medical
aids. I've glittered my walking stick, I've painted my splints and I
tie dyed my tubigrips. I'm wearing them, they're not wearing me!
People can see them anyway so I might as well make then fit my
style. Get the flashing lights on you wheelchair wheels. Get the
pink chair. Stick rhinestones on your walking stick or frame.
Customise your splints. If it makes you smile, do it! You're still
you!
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