Kicking furiously, getting nowhere

LifeME/CFS

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I haven’t really written on here for a while, and it’s because there hasn’t been much to say. Things have just been kind of shitty. I’m always sicker in winter. Everything aches. I’m always exhausted. For several of the past few months I felt like I barely managed a full week of work. I ended up with a severe case of bronchitis that had me out of the office for a week and a half, coughing up my lungs and running such a fever that I was drenched in sweat and disoriented for days. And then there’s just been various disappointments – I’ve tried to chase new opportunities, but since I fell ill (nearly two years ago now), it sometimes feels like things just don’t work out for me anymore. Sometimes I feel like I’m becoming an increasingly dull and uninteresting person, and I just can’t see a way forward. It’s like I’m trying to swim and kicking as hard as I can, but I’m not moving, and I’m just getting tired without making progress.

When your ‘invisible illness’ is not being so invisible. #mecfs #invisibleillness

A photo posted by Ashlee Betteridge (@ashbetteridge) on

But thankfully the weather is getting warmer now, which always helps. Everyone comes out of hibernation and I feel less alone. Muscles ache less, and just being outside is a simple joy that can be easily added to even the most ‘paced’ of schedules. Today was sunny and warm, and I caught up with a friend for brunch and it was all really nice. Two long weekends back to back have also been really good – but a reminder that I’d probably do better if every weekend was a long one.

I’m still trying to find answers for my illness, but its still a tough process with lots of heartache and failed experiments.

A few months back I went to Sydney to see an integrative GP who is apparently a specialist in CFS, and a herbalist who friends fervently recommended (cue more exhaustion, and my parents having to cough up $1000 to pay for it). I’ve been taking the herbs as directed, without improvement. So far the ($160 a month) probiotics regime recommended by the integrative GP hasn’t yielded results either, but it did help when I was taking antibiotics for the bronchitis, stopping the icky stomach sick I usually feel if I have to take them. There’s a lot of evidence emerging about the gut biome and its connection to everything so I’m willing to keep trying with that. I haven’t been a convert to that doctor’s recommendation that I eat stewed apples every day though to reduce gut inflammation – an allegedly ‘scientific’ paper on it, that didn’t even seem to be peer reviewed, was unconvincing, and I just can’t be stuffed to cook them all the time. I also never trust a paper that has a rhetorical question in the title that never gets answered (see Betteridge’s law of headlines)! I’m trying to act on all the non-apple-based advice, but there’s been no magic transformations.

I’ve also been to more specialists, who requested tests that have all come back showing how normal I am, and who have then told me that I should perhaps get half my stomach cut out as living off pureed food for the rest of my life is probably the only way I will ever be able to lose weight, and maybe major surgery like that will fix my CFS because… weight? Oh, and they also dropped a casual reminder that I have approximately three and a half years before my fertility declines, so I’d better think about that too. It’s not that the specialist was cruel about it or anything, they were quite nice, but it’s just that a) I like solid food and don’t want to have surgery and b) I’m hyperaware of what the consequences of this illness dragging on could be on many facets of my life and c) I hate my body with a vengeance, especially at the moment because I have put on weight due to not being able to exercise and various other things connected to the illness.

So on the one hand I feel like I’ve been pelted with apples, on the other I’m feeling stabbed by little ‘evidence-based’ knives. I feel disgusting and hate looking in the mirror, but I’m still pushing on, even though I’m starting to wonder if there’s much point in all these appointments.

So that’s basically been my winter. I’m so glad it is getting warmer.

One Response to " Kicking furiously, getting nowhere "

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