Im doing much better now and no my health isnt better, in fact you could argue its worse. But everything feels managable I have a good set of doctors, medictaion that help me live a semi normal life, Ive learnt alot about my illness, as I always feel much happier when I know excatly what is happening in my body. But Im not better? Its funny my mum said the other day that I seem to be better and I had to correct her that no I wasnt, but everything did feel more managaeble, the fewer bad days are enough to celebrate. And even on the bad days I no longer beat myself up.
You have to get used to alot being chronically ill, constantly changing plans, planning your entire day, dealing with people not understanding, managing all the doctors appointments and medication, getting used to the fact you have an incureable illness.
One thing that I dont think abled bodied people get is you cant simply do things, like I cant juat try some clothes on for example, without that taking away my spoons. If you havent heard of the spoon theory let me explaining it simply. We all get a set of spoons which is how much energy we have a day before we get ill or burnt out. For exmaple an abled bodied person on a good day might have 30 spoons they can do laundry, hosue chores, go to work, go to the gym, then meet friends for drinks in a day, they might feel tired but with a good night sleep theyll recover. A chronically ill person on a good day might only have 10 spoons they have to choose between work or house chores or meeting friends for drinks. If something doesnt go to plan, say they have to get dressed twice as they dont like the outfit or they are out shopping trying on clothes that takes spoons off. But the difference is sleep doesnt solve anything, and if theyuse all there spoons up and borrow some from the other day they can become really ill go into the flare up, and no not like a cold. But the type of flare up that if am abled bodied person experinced they would go to a and e.
But I feel Im starting to get the hang of being chornically ill, Im getting used to the constant testing, the medication, the doctors appointments, the unpleasant symtoms I experince, Im getting used to cancelling plans, Im getting used to having the energy level of an old person. Its kind of sad that Ive had to get used to it. But only by accepting that this is my reality now can I move on with my life, and be like well I can still do most things just with a bit of accomdations in place. I have to normalise, I have to speak about it, attend all the medical stuff, but I also get a life outside of being ill thats what all these self management stragteies and medications allow, is me to also have a life outside of being ill. Which is why Im glad Im living in the 21st century as if this was a couple of 100 years ago even a 100 I would of been bed bound and wheel chair bound. I feel finally ready to move on, with my life. Its probably going to be hard to be realistic, my illnesses are going to have periods where they are really bad, and periods where they are better. But its all going to be okay, I can handle it, and if you are reading this so can you, you can probably handle way more than you think. But also I would like to point out you dont have to handle everything yourself, its okay to share the load with loved ones, proffesionals such as therpists and doctors. You dont have to cope with everything alone.
Love Amy x
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