A passing comment on a forum today got me thinking about dreams. Not the crazy vivid ones I have most times I sleep, or the “I want to marry Jon Bon Jovi” sort (though Jon if you’re reading I’m still open to offers).
I mean the real world dreams we all have, whether it’s a seeing the sunset in Jamaica, a shopping trip to New York, running a marathon, cycling from John O’groats to Lands End, travelling route 66 or learning to play the piano. The kind of dreams that stay with us for years, because one day, with hard work, they could happen.
We don’t give up on those, they’re always there, always possible. And then they’re not. Chronic illness, in my case RA, comes along and blasts a big hole in your vague plans. Between fatigue, pain, disability and depression suddenly taking a shower is hard work, earning power is reduced or removed and you can almost see those dreams vanish into nothing.
This was the point that was briefly being made, and it’s stuck with me all day just nagging away in the background. Because… well…. what if? What if I don’t have to give up on my dreams? What if they were still possible? What if part of accepting my new normal is looking on this as a challenge or a puzzle, finding new ways to slot the pieces together so they fit in a way that suits and empowers me?
OK.. So, what are my dreams? I had to really stop and think. These things are often vague, ephemeral thoughts that weave their way into our lives but never get pinned down. I have a few of the standard bucket list things, a hot air balloon ride at dawn (yes, I know, I hate mornings!), horse riding on a beach in the waves, travelling the Old Silk Road, revisiting Morocco, learning to rally drive. The last one is realistically a no, I’m not sure my joints would take the bone shaking involved! The others, finances depending(!) are all still possible, I may need to make the horse ride brief or be lifted into the balloon basket, but they are definitely doable with support.
What about the deeper dreams, the hopes I had for me? The one that stands out for me is that I’ve always wanted to write a book, I’ve scribbled a lot over the years, had various ideas, but kept not having the time. Well that’s certainly not the case at the moment. Time is one thing I have. However, realistically I would need to pace myself carefully around my fatigue, I can’t sit and type for long periods, I often can’t concentrate either. But, given consideration, none of those things are insurmountable.
I’ve kind of digressed, I do have a point here which I’m reaching in my rambling way, which is that dreams by their very nature are fluid. Yes, chronic illness can shove a huge road block in your way, but there are other routes we can take. If your dream is to run a marathon and that’s simply no longer possible, take a look at what that would have given you. If it’s the challenge of pushing yourself and your mobility is reduced, look for new achievable challenges, perhaps you can cycle or swim instead and still get that same sense of achievement?
I honestly believe that by standing back and thinking about what we really want, then combining that with our capabilities, we can come up with a more flexible route and still reach our dreams.
5 thoughts on “Still Catching the Dreams…”
I love this, your attitude, and most of all- YOU!!
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Thanks so much Billie, we gotta keep keeping on :))
Thank you! X
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Can I ask you a few questions about your fatigue?
For how long of a period can you stay awake? Are you able to work?
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Hi. Fatigue is such a hard one to quantify, the most difficult thing for a lot of people to understand is that there is absolutely no connection between sleeping and fatigue. Whether I sleep for 3 hours or 12 it has no bearing on how fatigued I feel. Some nights I can be incredibly fatigued yet unable to sleep, others I will sleep for hours and still wake up exhausted.
Taking a shower or preparing a meal can leave me needing a rest. I am currently unable to work, but I remain hopeful that once I get the right combination of meds this will change.
I have learnt to take each day as it comes, pacing is really important, if on a better day I rush around I can crash on the next, it’s really hard as the temptation is to ‘do it all’. I hope that helps some, please feel free to ask more if you need, I’m happy to help if I can xx