Last month I took part in this monthly link up, hosted by A Chronic Voice and got a lot out of both writing from the prompts and the community of fellow chronic illness warriors. So here I am again, for June. I did try to look for other link ups like it but have struggled to find one that feels up my street (or rather, canal…) – please add suggestions in the comments if you have any!
At the grand age of 33, I feel like I have ‘started over’ a disproportionate number of times. But perhaps for everyone their 20s is the decade for big change. Since I was 18 years old I have lived in seven different places (including six months backpacking), been in five relationships of at least a year each and have worked my way through about five different mixes of friendship circles. It feels like a lot of change but at the same time feels like repetition; I am repeating the process of ‘starting over’. Starting over as someone with a chronic illness was one that I obviously wanted as much as Greenpeace want nuclear bombs in the world. However, reflection has become an old friend of my repeating process, and is one I have harnessed massively, especially thanks to a couple of ‘uber-reflectors’ in my life (enter hi-vis joke here…). No doubt there will be a few more start-overs in my life to come, but I think now I am less keen to actively seek them out; instead, repeating the mantra of ‘health comes first’.
The best type of wondering in my opinion, and that of my entire family, I think, is wondering about food. People often wonder how I manage to stay slim when I think about food as much as I do and I don’t always know the answer! In the last year I have changed my diet several times, in the hope of helping my health as well as maintaining my healthy weight, despite being ill. I have pondered, researched and discussed food with fellow chronic illness food-enthusiasts as well as family members who are trying desperately to keep up so they can wonder what they can cook me. I have also been wondering what diet is best for the planet, which in the mix of everything else is no simple matter. The current plan has been in place for one week…
People always ask children what they’d like to ‘be’ when they are older. ‘Turning into’ sounds like it might be on the arc of a circle; that you could ‘turn out’ at any point, which to my mind is more appealing. No one plans to turn into a chronic illness warrior, but some manage to turn out of it. Perhaps they are ‘just lucky’, or find the right medicine, or make the right life choices at the right times. Perhaps that is how I will turn out, and perhaps not. For me I think a better aim is to turn into someone who is seeking happiness no matter what else happens.
Exciting times in terms of the world of ‘getting’; I have just got a new preventative device for migraine! It’s a Transcranial Magnetic Stimulation device, and if you can say that after a few drinks I’ll give you a pound. It’s now mine for free, for a three month trial. After that I would have to figure out how to pay the £150 a month ‘rental’ they extract from you for the privilege of a reduced level of disability. I am not dwelling on this for now; I have got this device which looks like it belongs inside a spaceship, and will see if it works before considering the long term getting of it.
Following on from the last prompt, a big desire then is for this machine to work. Not cure me, obviously as there’s no cure for migraine still but a reduction of symptoms enough to get some of my life back. It’s hard to write about how much I desire some of those things because it’s too much to hope for. I’d like to plan an hour’s walk tomorrow, and achieve it. I’d like to plan to visit family, to join my partner sitting on the towpath more often, watching the hire boaters crash into banks and other boats (it’s too late to warn them by the time they come careering past us) and maybe even – dare I even desire this??- work a bit more.
At what point do we start again?
Or turn back to an old trusted friend
Invisibly placed upon that sphere
In sickness neither there nor here
When the world seems turned against us
Desires faded and achingly precious
I hope you’ve enjoyed reading my blog. I’d love to hear if you’ve had any similar struggles, with or without a long term condition! Subscribe yourself to get emails when i write more blogs (roughly every two weeks)
An honesty photo from me; in bed before the migraine gets really bad but still struggling.