Sometimes with CFS its hard to see progress. One of the reasons for this is the series of peaks and troughs that remind me of something I studied in the dim and distant past for O level physics. There are so many ups and downs and the occasional ping of the elastic sending the peaks and troughs wild. You learn to live day by day week by week. One of the problems is that looking forward to a holiday involves keeping your fingers crossed that HWIOO is on a peak rather than in a trough. It’s one of the reasons he hasn’t booked a photography or painting course. He’s never quite sure how he’s going to feel until he wakes in the morning. There’s been a couple of holidays that have coincided with a trough and they haven’t been great. Therefore it’s important to plan carefully so that HWIOO can slumber if he wishes whilst I can still have a nice time.
Today we visited Hexham so a compare and contrast was possible from the start of the CFS journey. Last time we went there HWIOO had just been diagnosed and it wasn’t the happiest holiday we’ve ever had one way and another not least because I was doing all the driving and HWIOO was so tired that his mental comments on what he would have done were neither complimentary nor internal. He didn’t want to photograph the inside of the abbey, didn’t want to browse the shops and quite frankly would rather have just stayed in the cottage sleeping – whilst I tiptoed around and developed cabin fever having read several books by midweek.
Today it is a much different story. For a start the afternoon nap is an understood. There are some days when HWIOO feels up to a gentle potter the whole day, others a quiet sit in the cottage with a book and on others a nap is required. I have a whole bag of books, crafting essentials and my writing to keep me out of mischief. I also no longer book cottages in the middle of nowhere. I now book them so that I can either visit a site of interest or a nearby cafe should cabin fever strike. It does require some research before booking but it makes sense as does ensuring the bedroom isn’t below the living space!
The other thing we’ve discovered is that if we know that we’re going to come back to an area it removes my overwhelming need to see everything – I am a woman who used to arrive with an itinerary of places to see and plan the holiday for optimum number of visits. These days I have learned to relax somewhat. Someone I know who has CFS also says that holidaying in the same place more than once makes for a better holiday for similar reasons because obviously no one wants to sleep through their holiday. Going to new places, whilst exciting, can be stressful which is not good for CFS and is another reason why research is essential.
So back to Hexham. We arrived mid morning (another change), parked close to where we wanted to visit (using energy walking long distances on a bad day before arriving at the start of the activity is not clever), had a cup of tea in a nearby cafe (I have learned that it is not essential for me to eat cake at every stopping point and HWIOO shouldn’t have too much refined sugar in any event – better something that releases energy slowly) and then off we toddled. We’ve learned not to over do things – even if HWIOO seems fine its best to only do things for an hour and then move on to something else. We’ve learned to come back another day if need be. It’s part of the pacing. It took us a while to realise that even if he seems okay not to overdo it and that photographing two different places does not count as two different activities. I should also add that it’s our second outing to Hexham this week. We came earlier in the week to the market. It’s not that I don’t still consult leaflets and websites – now I just have to make sure there’s space rather than cramming everything in.
We’re learning. Slowly. But we are learning. HWIOO is making progress. What HWIOO thinks of my driving I couldn’t say because he’s now sufficiently awake not to voice his thoughts out loud! He is also interested in stuff again – at the onset one of the hardest things to cope with was his depression and general uninterestedness – which I do sort of understand. If I felt like I hadn’t slept forever I’m fairly sure I wouldn’t be interested in much either. So one way and another its a bit of a red letter day – HWIOO is interested in things again. He’s started doing some sketching and is making suggestions of places he’d like to go. Oh yes – the sun’s shining as well.