Adaptation

When someone is diagnosed with a life altering illness, changes have to be made. Most of the changes are directly for that person, but many of them also affect others- family and friends of that person. I've had to make a lot of changes and adapt to a new way of living. I think many many people still don't realize the extent of this. Let me list for you just some of the many changes. They may sound like no big deal, but they are a huge deal. Because anything can set me into crisis, so I need to control my surroundings/setting as best as I can and it would be a huge help if others understood that and assisted me with that.

- Air conditioning- The heavier the air, the harder it is for me to breathe. The harder it is for me to breathe, the more my muscles are working. The more my muscles work, the faster and easier I will fatigue and risk going into crisis. Even if I'm not really warm, sometimes I need the air conditioning just to allow me to breathe easier. Even if there is a cool breeze from outside, if the air is humid it is still too hard for me to breathe. Even if YOU can breathe perfectly fine, I cannot. Please realize that and help adapt the environment for me.

- Stress- Like I said before there is good stress and bad stress but let's focus on the bad stress for a moment. I need to avoid it as much as humanly possible, and it is possible, but I need others help. Don't argue with me. A conversation/discussion, fine... but argument, well no one should do that to begin with but it's especially hard on me. Take this a step further, don't argue in front of me. Even if I'm not involved in it, I hear it and the raised voices alone drain me and stress me out. This is especially true about matters that do not and should not matter. People argue over everything. Everyone needs to take a chill pill.

- Everyday activities- opening a door, putting a dish in the sink, making a phone call, etc. etc. Everything that seems easy for you is not as easy for me. Some doors are really heavy, and even if they aren't, it's using up the small amount of strength that I do have. If you are with me and can open the door, please do, I will really appreciate it. I do feel bad still standing there having another open the door for me, and especially if I see elderly coming in after I've entered I want to turn around and hold the door for them, but I just can't do that. As much as I want to help like I used to with any household stuff or if I'm visiting someone else and want to assist them with dishes or whatnot, well I can't do that as much anymore, I shouldn't do it at all especially if I'm visiting with people because my energy needs to be reserved for that. Making a phone call- sounds so simple. It's not. Holding the phone to my ear tires out my arm quickly. So you say get a headset or use speakerphone. I have and have used both, but talking also tires me out. If you've ever been around me within the past year and you pay attention you will notice that if I'm having a conversation with you, at times I'll just need to stop talking and I'll sit there. I'll try to listen to everyone else but really what I'm trying to do is get some energy back. To summarize- if there is anything you can assist me with, I will greatly appreciate it. Trust me, I HATE not doing things myself and I hate asking for help, but it really does help.

- Spacing things out- This means multiple things. For one, each day in general. I try to avoid planning anything for the morning because taking a shower, getting dressed and having breakfast uses a LOT of my energy. I need a fairly long break before doing anything after that. And by break I mean basically laying in bed watching tv or checking email or doing what I'm doing now. "Break" doesn't mean doing things around the house and only refraining from going out. Then when I do go out- whether it be to a doctor appointment, visit a friend, lunch, etc. that needs to be spaced out as well. My days do have to be fairly planned for the most part- at least in regards to how long an "activity" will last and how much energy it will use. I can't be surprised with extra trips here or there. I need to do what my day had planned and that's about it, because I know if I do more the rest break won't be long enough to give me enough energy in time for my next "activity." Now what this also means is my days, if someone is planning things out that I am involved in, I cannot do things more than 2-3 days in a row, at very very most 3 days in a row, but safer at 1 or 2. Let me expand on this in a new paragraph...

Lately, I've been feeling a little bad I haven't seen many people at all since being out of the hospital, even before going into the hospital my visits with people were few and far between. I really do want to see you all, but it's very difficult to do this. The biggest reason right now is because all of June is currently booked. What this means is that in order to have those breaks in between the days I have to go somewhere, every single day is currently used up. If I have any more unforeseen doctor appointments or testing, I'm going to try to schedule it in July or my body is going to do more than it should. Hopefully these appointments slow down in July or August and then I can try to plan to get together with more people. But as of now, June is not at all an option unfortunately.

Let's summarize- if I have an activity coming up that will be fun (rare these days with all the doctors appointments) then I really really need to watch all of the above things and more very closely the days before to assure that I have enough energy to make it to that activity. That's the situation I'm in right now, trying to prepare my body for an activity planned over the weekend. But already I've declined with the air not being on for some time and struggling to get my breathing back to ok. My life is all about adapting, and I hope and pray others can help me do that by adapting as well. No it's not ideal, but it's what's happening.

That's about all I'm going to talk on that subject for now.

For a quick update- my INR (blood level for treating PE) was low 2 weeks in a row now! 1.5. I haven't been therapeutic for 2 weeks. Now they upped my dosage the highest it's been and it does scare me a little like what if there machine was broken and gave an incorrect reading and upping my dosage causes me to bleed internally. There goes the Stephen King side of me creating crazy situations lol. No I'm not as worried as I just made it sound, it's just concerning that my level is still so low. If it's low again at the next check after upping the dose a lot, I may ask about the glass of wine a day prescription. Not joking. There have been patients who have had doctors suggest they start having a glass of wine a day to help up their INR. Basically it's drink every day or don't drink at all to keep levels consistent. I chose don't drink at all... but if prescription calls... that wine in the fridge does look delicious.

Writer's block... mind just went blank so I guess I'll end it there. I have a good topic to write about next time...