When I was working I used to keep track of my life in my head. I didn’t need a diary, I just about managed to work out where I was supposed to be and when. I didn’t really plan too far ahead, so the months calender in my head was sufficient. At the beginning of the year each teacher would be given a standard issue school diary, and aside from filling in the front details section, mine would be largely kept unused. Therefore it comes as a surprise to me, that now, when I am retired and have far too much free time, I am newly converted and reliant upon google calender! When you get ill, life just suddenly becomes more complicated, and your time seems more precious.
Since starting to use oxygen nearly two months ago, I’m now able to do slightly more. Instead of having to sit down all day every day, I am starting to be able to do a few more jobs around the house, and a few more fun activities. Therefore in the last few weeks, we’ve started venturing out of the house for the odd meal or local excursion. Over the years, my husband Phil, has converted me to enjoy watching sport. We’ve been supporting the Tigers rugby team (my hometown) from afar for a number of years, but have never actually managed to get tickets to see them play. Therefore we jumped at the chance to go and watch them play the Saints (our local team) when the in-laws visited this weekend. We had fab pitch-side seats, the weather remained sunny despite snowing earlier in the day, the atmosphere of the crowds was fun (my mother-in-law loved joining in the singing!) and although it was a close final score, the Tigers thankfully won! But most amazingly my body was able to cope with a 4 1/2 hour trip. I went to bed happy but tired.
Unfortunately I awoke feeling exhausted and struggling to breathe. This is completely normal for my illness, and for a lot of chronic illnesses. I assume it is my body’s way of forcing me to rest, thus allowing my lungs the chance to recover. On a recovery day I can do very little. Walking to the other room is difficult, as my bag of air is small, and so I tend to pick zero-effort activities like watching my recorded TV programs or reading. I always try to get up out of bed to spend the day downstairs, and also strive to get washed and dressed, but on the odd occasion I have been caught by the postman in my PJs in the afternoon! Phil is normally promoted to head chef and house wife, and he happily treats the day as a chance to do his own thing, mainly running or doing DIY on our camper van.
Recovery days are psychologically the hardest for me. I’m a pretty positive person, but the odd time when I cry or feel the need to spend an hour wallowing is when I’m feeling poorly. Happily though I often go the opposite way; the success of a happy excursion the day before, generally sends my dreams rocketing and I spend the day day-dreaming and googling about future holidays and fun days out. In fact, I’d say that pretty much all of our holidays and activities are booked on a tired day!
Getting the second diagnosis (PVOD), and the poor prognosis, suddenly brings to the forefront the need to have a good summer and make more happy memories. However, my every waking moment cannot be filled with continuous fun activities. For every fun activity planned, my body needs a rest to prepare on the day before and at least one full day’s recovery afterwards. If it has been a particularly tiring day, then I may even need to have two days of complete rest afterwards. Consequently instead of being able to enjoy a full weekend of activity, my body can just about manage a few hours at some point! Monday to Friday, my days are normally very routine- I generally do the same amount of activity every day, at a level my body is able to cope with so doesn’t have repercussions the next day. If I lived my life like a weekday every day, then I’d need very few tired recovery days. However when I think back to the best times over the past three years; it is the days out, the visits from friends, the holidays, the meals out. Memories are made when we do something exciting, something fun. And it is those memories which can help you through the hardest days. I’ve spent many a poorly day looking at photos and reminiscing about adventures. Therefore as much as I hate feeling ill, as scared as I feel when I can’t breathe properly, as tired as I am when I can barely get dressed, I’m still happy to have those poorly days, if it is the price to pay to have more adventures and make more memories to help me in the future. It is the fun days that keep me going.
And that’s where my google calender comes in. Getting ill is suddenly a logistical nightmare! If I plan a day trip, then I need to blank out the rest of the weekend and the day before. If I plan a weekend away, this can only be done once a month as is so much more tiring. Suddenly a diary is essential. It is also essential to have understanding family and friends. I am so thankful that my best friends and family tolerate my diva demands, as I try to juggle a good time for our meet ups! I think they’re now quite used to me turning down a date because I have something already on -the day before! Lunch with my old flatmate tomorrow is being limited to an hour, as I already have an activity planned the next evening! A friend’s overnight stay has been moved to a Tuesday to allow me enough time to recover for my Saturday visit to the Chelsea Flower show! The weekends away I have planned in the summer, have all been strategically spread out to allow me to do them, and my wonderful and understanding significant others have just happily agreed to the dates I have suggested.
And to add another element to the equation- at the moment my life is also being overrun with medical appointments! For the past two months, I’ve had to have weekly blood tests (my poor arms!), the odd GP’s visit, plus appointments to the JR hospital, the Brompton hospital, and now the Harefield hospital. Unfortunately these cannot be planned, and are often arranged last minute, throwing a spanner in the works of all the plans made before. My first transplant appointment has come through and is two days before a school friend’s wedding. Another Harefield appointment has come through and is the same time as we’re due to be on holiday again (third holiday clash of the year!).
So yes life is quite complicated at the moment. I feel like a juggler, continually having new balls thrown in, and balls dropped! But at this point, I’m just thankful I’m still in the game, still making memories and still slowly juggling. With the help of my google calender.