There is only a 1 in 100 chance of going into urine retention - that will be me then.
Recovery normally takes 1-2 days - 2 weeks later, I'll still be struggling
This drug works for most people with your condition - bet it won't help me!
Paracetamol helps with pain - LOL no.
Waiting times are 6-8 weeks - Guess I'll see my Doctor in 6 months.
These tablets make most people very drowsy - *still doesn't sleep*
Since my teenage years, I have had new medical 'issues' almost yearly, starting with EDS, then complications with my digestive tract, numerous injuries and then a bout of eye pain and migraines. A lot to deal with but nothing that I would let stop me studying then working. But this last 'episode' that started last year has just felt like a continuous attack of new symptoms, infections, viruses and operations to recover from. Each experience I have, I try to be optimistic and hope for positive outcomes and better days, but the reality is I often feel defeated and down. As each 'episode' of poor health passes, and the gaps of good in between seem to get smaller, I start to feel myself becoming a cynical patient, that perhaps I'll never be 'better' and on edge as to what will go wrong next.
It's no coincidence once something goes 'wrong' many things follow. Most chronic illnesses overlap or many are connected even if it is not understood exactly why. A body in pain and under stress is then more likely to develop additional symptoms which can become a vicious cycle to break out of. Add in the mountains of medication (often with more side effects than its worth) which lead to further complications as well as tests and procedures that exacerbate your symptoms - it's no wonder a flare or virus can feel never ending. Or that it feels we leap from one crisis or symptom to another.
I often think of it as the least fun rollercoaster you never chose to go on. It's uncomfortable at best, it changes constantly but not in a good way and it stops all the time to steal blood, operate or have health professionals poke you and be given medication that makes the rollercoasters side effects worse. Just occasionally, you get a good bit and you can relax and maybe start to enjoy it, but before you know it, you hit a bad section again. Then once you've been on it for a few months/years, you start to not enjoy the 'highs' so much as you are now aware of what may be coming up ahead, and just how low you can go.
Does that make me a pessimist?
I think you would have to be superhuman to go through so much medical intervention or health scares without becoming weary of what could lay ahead. It's in our nature to be protective of our bodies and what we have to go through.
Equally living in a constant state of fear over what could go wrong or terrified about risks during procedures could send you mad from worry.
I find myself sitting heavily in the middle of the two as a 'realist'. I'm not imagining I'll be cured and running with unicorns, nor am fixating on the potential sharks when I next swim. I'm realistic! I'm realistic with how my body functions, realistic with my expectations and realistic with what could still be ahead of me. And somewhere amongst that, I am still hopeful for a better rollercoaster ride in the future...or just a go on the teacups or ferris wheel for a change. Would love to hear your thoughts on this, share them below
Lots of love,
Zoe xx