My story, part 1

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