One of the reasons I think a lot of people like myself struggle with knowing when to stop and rest is that it isn’t really all that clear cut. Say for example I was making the decision whether to go to the shops for 2 hours or not. It isn’t that I can’t do it, more what will the repercussions on my body be and are they worth it. It is possible to do things which use more activity or energy but it does create what the hospital term “payback” (am vaguely confident it’s a medical term not just one I have made up and allocated to a certain feeling) which is also known amongst some of us as a “CF hangover”, so the equivalent of a rather heavy night out and the horrid consequences the next day, but just in lung terms. The more strain put on my lungs, the bigger the payback and the longer it lasts. Now this was fine, I have never minded because I know that if something is really worth it (and there are many things that are) I won’t mind having to spend the next few days in bed wheezing. But of course the lower your base level gets, the less room you have so now small amounts of payback floor me completely so I have to be a bit more pre-emptive, not something I am good at. At present my lungs are furious with me (I haven’t quite worked out why yet, think it may have something to do with leaving the hospital where apparently they were quite happy) so I am having to stay home and behave (or try to) and wear my higher flow O2 mask pretty much all the time.
The last few days have involved lots of friend related stuff which is one of my favourite energy expenditures of all time. One of the most important elements in my life is my friendship network, as without these rather lovely people…well life wouldn’t look half so pink put it that way. My stroppy and controlling lungs have forced me to adapt over the years, and I have no choice but to do as they tell me, however somewhat bewilderingly my ever faithful clan of friends seem to bow down to their every demand as well, making increasingly large efforts to maintain social contact as gradually traveling, then bars, pubs, even restaurants are taken out of the equation by ever increasingly demanding breathers.
Yesterday I had a long overdue gossip with a friend (she did most of the talking in an attempt to stop me from doing so) and then last night a friend of A’s came round for dinner and a pre-Christmas catch-up. At first my lungs were incensed at the idea of having to do any more socializing so I was forced to lie on the sofa festooned in a pink blanket and looking every inch a pampered princess who couldn’t be bothered to sit up and talk nicely. Luckily A’s friend knows otherwise. As the evening went on my lungs decided actually socializing might be quite fun, which was just as well as two more people turned up, one of which I didn’t know and whilst I love meeting new people I am always a bit nervous that I come across as “Emily” rather than “that girl who is ill”. I am convinced that what I look like won’t define me so don’t mind wearing my oxygen, more how I behave is what will create the fixed image in their minds, so I was pleased I was able to chat in a relatively normal fashion. I was even more thrilled when one of them produced a one of those lego construction kits which according to the picture on the box would create a rather complex looking digger and my lungs decided this looked an amusing enough activity to participate in. Watching two guys in their late 20s concentrating hard as they attempt to assemble a kit extracted from a box which is marked clearly “ages 5 and up” was rather amusing. Convinced we could do better, we the girls started to build the second stage of the digger in an attempt to beat and shame them but we were sadly duped by multiple overly similar looking parts resulting in two very gloating men.
Today I was like a rather over-excited child (not too unsual then) as my girlies who I lived with whilst at Uni came down for the day; shockingly this is the first time we have all been together since graduating. Having lived with these girls for three years they are more like sisters than friends really and due to our student roots, lounging around on the sofa jabbering away and not really doing anything constructive comes naturally to the three of us. That is actually a woeful underestimation of our creative skills which were exercised when they produced a box of decorate your own gingerbread men, and the next half hour or so was spent deep in concentration as we created 4 gingerbread replicas of ourselves. I have photographic evidence which I will upload when I find the camera cable (doh). My lungs have done exceptionally well over the last few days and I am really indebted to them, as despite making quite a fuss whilst I am trying to socialize at least they have allowed me to participate (I did fall asleep this afternoon whilst everyone was still here but I still think they did well). I am being really careful and maximizing all medication and oxygen usage so as not to start knocking myself down into a health dip too. I might be housebound at the moment due to inordinately puffy lungs but so far I am having a truly fantastic holiday season and intend to continue doing so. After all it’s not what you can do or where you are, but it’s the people who make it really isn’t it.
Sending some smiles!
2 months ago