So… I am not usually the type to
share personal things on the internet. I’m a very private person, and I am the
kind of girl who answers “just fine” when people ask me “how are things?”
That’s something I am working on though – I have come to realize that life has
changed for me and that my story needs to be told for the people around me to
understand what I’m going though. So here goes; I am
not “fine”.
In fact, I haven’t been “fine” for about a year now.
It all started last summer after a
trip to France when I got a “cough”. Now there’s nothing unusual about getting
a cough, but that “cough” was the start of everything that has been going on
with me since then. My “colds”, or “coughs”, sometimes come with asthma, and
since we were in France, I simply went to the first pharmacy I could find, and
they were kind enough to give me some asthma medicine, even though that
normally required a prescription. Awesome! Problem solved! Or not… After a few
days I traveled back home, as planned, and got well, or so I thought… A few
days later I went for a run. The next day the “cough” was back with a
vengeance. The coughing and asthma were worse. I felt tight over the chest, had
chest pain as well as a feeling of a “lump” in the chest, and it felt like somebody
was sitting on me, weighing me down and making it hard for me to breathe. All
of that has been with me almost every day since. Some days are better and some
days are worse. Some days I cannot make it up a flight of stairs without
catching my breath a couple of times, and some days I can without too much
effort. It took me quite a while to figure out, but basically, the more active
I am, the worse I feel, so exercise is a no-go and I need to rest, a lot.
The most demanding form of exercise I can manage is a short slow walk (sloooow!),
but that is only when I’m having a good day. Over the past
year, I’ve been to the emergency room twice. Why? Because the tests my doctors
made me do overexerted me and made me feel so bad the next day
I thought I might have a punctured lung (that has happened to me two times
before, hence the hypothesis). That was not the case though, and
they sent me home the same day both times.
Anyway, this past year has had more
health related “surprises”. Periodically, when I’m having bad days, I’m much
more tired than usual. I used to be a very active person. I’d enjoy training in
the home gym we’ve set up in our attic, taking long power-walks, doing garden
work, photography, managing internet forums, and other fun things, but this
past year I have been forced to give up almost all of them. I simply don’t have
the breath, or the energy, to do them anymore. Some days I don’t even have the
energy to sit by the computer. It’s hard to describe the way this tiredness
feels to a healthy person. I have never felt like this before, but
imagine that feeling of being totally spent after a long hard day, move it to
before lunch and add confusion… which brings me to my next “thing”;
“confusion”.
This past year I have been growing
more and more forgetful. Not that normal kind of forgetful that you sometimes
get, but unusually so. It’s normal to forget a thing or two during a day, but I
am getting to the point where I constantly forgetting what I’m doing, or what
people have told me. A few examples… I’ll put on music on my computer and not
realize that the speakers aren’t on until a quarter later. I’d pull up my phone
to check on something, and the process of logging into the phone (pressing my
thumb on the button) makes me forget what I was supposed to do. I’ll walk into
a room without a clue as to what I’m supposed to do there, or forget what
things are called. Like I’ll remember the name of a common flower (like a
Poppy) in English but it will take me about 10 seconds to remember its name in
my mother tongue; Swedish. Or I’ll start telling you something and forget the
point along the way. Not that uncommon you might think, but this happens a lot
to me, every day, and it’s frustrating.
I also have other symptoms, but so
far, they haven’t had a noticeable effect on my day to day life. I have skin
problems, stomach problems and problems with circulation in my hands and feet.
That’s why I always dress warmly (slippers at work, even during summer) and
that’s why I’m currently trying out a gluten free diet. Oh yes, this past year
I’ve been very careful with what I eat. Not because I suspect that all this is
the result of a food allergy, but I have always prioritized eating healthy, and
especially now that I am unwell. Add to this that the thing I suspect this is…
well, people with that diagnosis get worse if they eat gluten.
So, there you have it. This has been
my life the past year… Don’t worry though, I am in contact with two wonderful
doctors and they are trying their best to figure out what this “thing” is (no diagnosis,
yet). They have done a gazillion tests (I’ve lost count) and are pursuing a few
things, but it takes time. There are queues to do the tests, and to see the
specialists, so I’m patiently waiting and trying out different medicines to
ease my symptoms. One of them worked really well, but since it’s harmful to me
to take it for longer periods of time, we are trying to get me off it (sadly it’s
not going too well this far). The waiting is one of the hardest
parts though. The uncertainty of all this is hard to live with. Like not
knowing if I will be well enough to go on a trip this Summer, to go on a
kick-off with my colleagues or even have the energy to spend some time chilling
with my friends a Friday afternoon. Or when I’m doing something I’ll worry that
the people I’m with might notice how crappy I’m feeling - I am, and have always
been one to put on a brave face and hide the bad. I’ve never wanted anybody to
see me at less than my best, and I never want to come off as whiny, but I’ve
come to realize that if I’m to continue living like this, I need to be more honest,
let people in on how I’m feeling and stop answering “just fine”.
To all of you who have shown me
support this past year, a huge thank you. Knowing that you care warms my heart
and puts a silver lining to my days. I really appreciate when you ask me how
I’m feeling, and appreciate your interest in how I’m doing. You mean the world
to me. Don’t be discouraged if I look uncomfortable talking about “it”,
I am simply having a hard time getting past “just fine”, but I’m working on
that. Facing the fact that this “thing” might be something more serious than
what can be cured with a simple non-prescription pill or short term medication
is hard for me. Sometimes I don’t want to think of it, because it makes me sad.
So there are also times when I just don’t want to talk about it. But if that’s
the case, I’ll tell you so, and I’ll know you understand. Just know that I
appreciate how much you care, and that I always appreciate when you ask me how
I’m doing.
And finally, a big thank you to all
of you for taking the time to read this long, rambling, most likely
typo-infested text J
Much love
MrsHjort
