Once again, I’m happy to be able to join in with the monthly writing prompts from A Chronic Voice. As always, huge thanks go to Sheryl for organising these linkups, I know I find the insights shared by others valuable, inspirational and often humbling.
After an extremely tough couple of years for personal reasons, I learned who my true friends are and who I can turn to when help is needed. People I really didn’t know that well have turned out to be amongst the most caring and supportive, resulting in new and deeper friendships being formed.
On the flip side, I also learned how selfish and downright unhelpful some people can be, even during desperate times.
It’s taken until recently, after a significant amount of processing time, stepping out of the maelstrom of day to day activity, to consider how I want my future relationships to be. I have no qualms about cutting some toxic people from my life as best I can, whilst remaining civil to those with whom I cannot completely sever the ties.
At the moment, my fatigue is terrible, perhaps the worst it’s ever been. I am sleeping ok in terms of the length of time I am asleep, but, as is common with fibromyalgia, the quality of that sleep is appalling. I wake up more tired than I felt when I headed to bed the previous night. And as a result, I am hugely reliant on coffee to kick start my day, as every day begins with me feeling as if I am hung over and have downed a strong sleeping tablet. Even heading out with my dogs for a walk through the fields on a crisp, sunny morning does nothing to make me feel awake.
Most mornings after breakfast, I feel as if I could quite easily crawl back into bed for some more poor quality sleep. The problem with doing that, for me at least, is that I feel even more depressed if I spend too much time resting, so I have to force myself to do something rather than surrender to the fatigue.
Right now, the only thing that works for me is 3 strong cups of coffee in the morning, which help me feel almost awake by lunchtime and before the afternoon fatigue arrives. I am totally aware that I am over-reliant on caffeine, but when you feel as if you have tried every possible life adjustment to release yourself from the grips of fatigue, if coffee is what it takes, then so be it.
Now that spring is on its way here in the northern hemisphere, my garden is increasingly becoming my retreat, as weather and illness permit. As I’m not fond of hot weather and sunlight that is too bright (migraine trigger), the garden has several trees and is mostly shady and over summer, it becomes my cool and peaceful sanctuary.
For the past couple of years, I have been steadily working towards making it a retreat for wildlife too and any new plants are chosen to attract as many birds and insects as possible. I love to watch the birds on my feeders and over the last few weeks, have had a couple more species visiting the garden. I’m also sowing lots of seeds to grow my own vegetables and herbs over the next few weeks, so once the summer comes, my little garden retreat will be both productive and attractive to visiting wildlife.
Having managed to keep free of Covid for the past 2 years, one of my husband’s work colleagues tested positive yesterday, and, given that the two of them spent a lot of time together in meetings this week, it feels like only a matter of time before my husband tests positive too.
This coming weekend, we were supposed to be hosting some friends whom we haven’t seen for years, but obviously, we are going to cancel that just in case – we feel it is better to err on the side of caution. Gutted, but hopefully we will be able to reschedule for the not too distant future.
Since being diagnosed with chronic illness around 10 years ago, I’ve been in an almost constant state of reframing my thoughts in order to better cope with living like this. I realise that in the grand scheme of things, I am lucky to be able to do as much as I do and I do know that things could be much worse. So some of the time, I feel quite content being me and doing what I do, despite my life not turning out how either I, or other people, might have expected.
At other times, especially when I see how friends and former colleagues are doing (almost always doing bigger and better things), I feel like the perennial underachiever, a total failure. Because the things that I can do aren’t typically valued by society, it’s easy to feel useless and a burden.
So for me, a life with chronic illness, means a lot of reframing. I constantly have to work to change how I view things and shift my mindset in order to feel ok being me and reminding myself that developing skills such as being a volunteer, running a group for the elderly are just as valuable as being able to run a project meeting in a corporate setting, even if society doesn’t see it that way.