Now you see it, now you don’t

It’s been a while since my last post. I have another inflammation in my lungs landing me the in the hospital (again), this time for a week. Doctors are still working on stabilizing my lungs. I do enjoy challenging people but I really believed they would have found a treatment by now. But the specialists are still working on it, so kudos to them for not giving up on me. And I hope they do find one and soon. I am not too exited over the idea of a double lung transplant. But, like anyone with a chronic illness, patience is key. Hope is scary. And the unknown causes anxiety. We each deal with this in our own way and writing is a good outlet for me.

So, the reason for this post.. Out of hospital I was prescribed oxygen (O2) at home for exertion. One part of this is a machine that is plugged into our electiricty with a 50 ft tube so I can literally go anywhere in my house. So if I am climbing our stairs, cooking, walking on the treadmill, etc. I can use the oxygen that helps to both save energy and reduce my shortness of breath.  I also now have access to portable O2 tank, which comes in a heavy ass shoulder bag, for when I go out. We are hitting my worst season, summer. Anyone with a respiratory condition I am sure can relate, so without a doubt the portable tank will get a lot of use.

I can go for walks outside when the weather agrees, go to the mall, out for dinner, visits with friends. It has made a huge impact on my ability to go places and see people,  that without the oxygen, I could not. I still get bad days however, which can be discouraging, because once you have a small taste of what able bodied people can enjoy everyday without thinking twice about it, it really is addictive. My therapist is thrilled at how much I have done to date. I was stuck in my bed or at the very least, in my house for a majority of the time. I am sure I don’t have to explain the emotional toll that takes on a person. It’s hard.

With this new found freedom, my illness has changed from being “invisible” to “visible”. It almost reminds me of those programs that do social experiments on unsuspecting people to see how they would react to seeing someone bullied, drop a $100 bill, slack off at a coffee shop or what have you. For me, before the O2 tube, no stranger would know how truly sick I am. I am on predisone, so that has a certain look to it. But you wouldn’t automatically guess that I am taking that medication to help control my lung inflammation. So my chronic illness was truly invisible.

Before the tube, people would be very impatient at how slow I walked. Many times I would get loud sighs, as in, can you move a little quicker here, I haven’t got all day. People would bud in front me, seeing me heading to a register and quicken their pace to get ahead of me. Something my lungs don’t allow me to do is walk quickly. I have gotten many surprised looks about being on disability. A look that seems to me is “nice, someone else taking advantage of the system”. Some of this may be me being sensitive to peoples perceptions but I really don’t think I am too off the mark.

Now that I am wearing the O2 tube, while outside the house, there has been a noticeable shift at how people look and talk to me. I was very self-conscious at the beginning, feeling as though everyone was looking at me. I would study their face as they passed me just to see if they did look and if they stared. And man, do they ever ! Doesn’t matter if it is a man, woman, their age, their own condition. I had a 10 year old boy stop on his bike and ask me “what is that thing on your face?” If he was closer to me I probably would have kicked him off his bike! I would be humiliated if either of my kids talked like that to a stranger, much less in such a rude way. And while out shopping in a clothing store, which takes a lot of breathing power actually, I came out of a waiting room with the tube on and a an older woman, sitting on a walker no less, said to me “poor you”. I again was shocked that first of all she wouldn’t get that people of all ages are affected by illness and secondly to comment there is something to pity. Again I was insulted. In my mind I thought if you knew how this appartus has changed my life you would be saying “lucky me”.

I have had this invisible vs visible illness discussion with a number of people who are close to me, for their thoughts on people’s intentions when they stare or make comments. My husband thinks no one notices. Which I always find amusing. He is constantly trying to minimize my self-critism, which I was very hard on myself adjusting to the tube in public. My daughter, studying to become a nurse, gives an evil eye back to those who stare and has the opinion, why would people not ‘get’ that a person would feel self conscious already wearing a tube & that staring at them makes them feel uncomfortable ? My son’s opinion is, if it makes you feel better, who cares what other people do or think ? Finally, my friends believe people are not trying to be hurtful, they are just curious about someone so young needing oxygen. And saying something like “poor you” is just a person trying to be nice.

After many years of being sick, I have come across a lot more people who judge and criticise then those who are kind and supportive. I keep very close to me the latter, and lucky for me I have quite a few in my life. I am not sure  between the two, having my illness hidden or out there for all to see, which is better. I know what makes me feel physically better is having my O2 tank.

To be honest, I have stopped looking into people’s faces for reaction, approval, ignorance because at the end of the day, I am getting out there. I am feeling productive. And that makes me happy. To be able to go shopping with my kids, pick up a few groceries,dinner with my husband, get my hair done …. this is all good stuff. Given the choice, I obviously want to enjoy some “normal” quality of life, regardles of what anyone thinks about how I look. And quite frankly, if it makes them uncomfortable that’s their issue not mine.

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