A Tough Week
It’s been a very tough week this week, debilitating nausea, intense fatigue and acute
dehydration add together to make one unhappy, moody Ellie. To say I’ve been feeling sick the
last few days is a huge understatement. I felt like I had heat stroke, motion sickness and the
flu all at the same time. The dehydration was a bit worrying because if I do have POTs then I
could very easily go into hypovolemic shock (not enough blood volume). Thankfully we went
back to the GP on Wednesday and got another new medication to try. You put it between your
upper lip and gum and leave it dissolve, which makes you look like bugs bunny complete with
a lovely pair of buck teeth.
dehydration add together to make one unhappy, moody Ellie. To say I’ve been feeling sick the
last few days is a huge understatement. I felt like I had heat stroke, motion sickness and the
flu all at the same time. The dehydration was a bit worrying because if I do have POTs then I
could very easily go into hypovolemic shock (not enough blood volume). Thankfully we went
back to the GP on Wednesday and got another new medication to try. You put it between your
upper lip and gum and leave it dissolve, which makes you look like bugs bunny complete with
a lovely pair of buck teeth.
 |
| I seem to always be in my mask and noise cancelling headphones these days. |
At this particular moment in time I definitely feel lost. I’ve become so tired of feeling as though every door I try is not just closed but is made of bomb proof metal, requiring a 15 letter password and a blood sacrifice to open it. I know that somewhere is the right door for me but as far as I can tell it’s at least a 26 mile hike away. On days like this it’s so hard to keep yourself positive and to keep fighting. The challenges we all face can seem insurmountable even if we know they aren’t. Instead of looking at the mountain that’s ahead of you have to just look for your next step. Step by step, that’s how you climb a mountain.
My next step is to start trying to assemble a medical team. Easier said than done, since I
have recently become an ‘adult’ in the eyes of the medical world I need to start from scratch
in building a team. You feeling like you’re selling yourself, “Wouldn’t you just love to
investigate my venous pooling?” (I’ll be honest not my best pick up line). I’ve suddenly
become a serial email sender. Hi, remember me I was on a course at your hospital, would
you like to be my ‘insert medical specialism here’? I have to somehow find an additional 5
specialist who will take me on as a patient.I may have finally tracked down 2/5, getting anyone
to agree feels like you are pulling teeth! Someone needs to create a linkedin for patients
looking for medical professionals, give me some networking help! As fun as it is to spend
your day emailing and googling whether so and so has experience with ascending paralysis,
I’d rather be doing almost anything else.
have recently become an ‘adult’ in the eyes of the medical world I need to start from scratch
in building a team. You feeling like you’re selling yourself, “Wouldn’t you just love to
investigate my venous pooling?” (I’ll be honest not my best pick up line). I’ve suddenly
become a serial email sender. Hi, remember me I was on a course at your hospital, would
you like to be my ‘insert medical specialism here’? I have to somehow find an additional 5
specialist who will take me on as a patient.I may have finally tracked down 2/5, getting anyone
to agree feels like you are pulling teeth! Someone needs to create a linkedin for patients
looking for medical professionals, give me some networking help! As fun as it is to spend
your day emailing and googling whether so and so has experience with ascending paralysis,
I’d rather be doing almost anything else.
In my most recent attempt to fight the slowly growing feeling of despair and find laughter I
redecorated my crutches. There is a history of jokes when it comes to my mobility aids. My
wheelchair had hot wheels pictures, my canes were covered in sweet wrappers… candy
canes… Get it? Now I’m pleased to announce my latest pun, my crutches have been
covered in a certain fruit , resulting in…… a pear of crutches! *badum tssss.
redecorated my crutches. There is a history of jokes when it comes to my mobility aids. My
wheelchair had hot wheels pictures, my canes were covered in sweet wrappers… candy
canes… Get it? Now I’m pleased to announce my latest pun, my crutches have been
covered in a certain fruit , resulting in…… a pear of crutches! *badum tssss.
It’s the little things you have to appreciate and laugh at to lighten the burden of mobility
issues. People will always stare, so give them something to stare at, you might even make
someone laugh. The next challenge for my comedic genius (too far?) is probably going to
be to decorate a rollator (that thing you see grannies pushing with a built in seat.)
issues. People will always stare, so give them something to stare at, you might even make
someone laugh. The next challenge for my comedic genius (too far?) is probably going to
be to decorate a rollator (that thing you see grannies pushing with a built in seat.)
This should help me to walk more since I won’t have to worry about not being able to sit down whilst still giving me something to hold on to for help with balance. It can be hard using aids like this, you feel so self-conscious. The world needs to break the social construct that mobility aids are only for the old. It’s hard enough accepting yourself with a mobility aid, people staring just makes it harder. The decoration possibilities for rollator decoration are endless, you could chose the rock paper and turn it into a rolling stone. Slices of bread and it’s a bread roll, it could even be a Rolls Royce! Let me know if anyone has any good puns in mind!
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