invisible

So…yeah…same old same old. I never know whether to keep mostly silent about health stuff – partly because sometimes talking about it is depressing, partly because I assume folks get sick of hearing how I’m still sick. (Yep I know the clue’s in the word ’incurable’ but a lot of people don’t know how to react beyond “what? You mean you’re still sick?”) 
There’re also the peeps who think talking about your illness – ’going on about it’ – after a certain amount of time isn’t healthy. 
But
Invisible illnesses are hard to understand.
Syndromes seem even more so.
I’m still learning how to stay sane like this…and I’d possibly feel a whole lot better if others had more of an understanding about what living with a disabling, invisible disease is like. Especially the one I’m learning to cope with. 
 
Because as folks keep telling me – I look fine.(Apparently. Tho’ I realised yesterday that I have no vanity left. But that’s another story…) 
There are a lot of us struggling with this kind of life and I think it would be easier if we talked about this kind of stuff a bit more. Especially the mental health aspects.
So…yeah… I’m still sick, and if I don’t post/comment/reply to comments/email/retweet etc odds are it’s because I’m even more ill than usual.
The current flare is perhaps due to a combo of stressors – one after the other since October. 
And the fact that I still suck at pacing. 
Stress + energy overdraft = a frustrated, resentful, exhausted, and sad, Sand.
I had high hopes for the gluten free diet, but I’m too ill to prepare much food so I’m not eating enough, which isn’t helping me get stronger. It’s a vicious circle.
 
So…yeah…I’m still figuring out the right balance of how much to explain/acknowledge and how much to leave unsaid/let go of. I may never figure it out…but I’m hoping the combo of writing about it and art will help me to find that balance.
Big thanks to anyone reading šŸ™‚
…but maybe there should be? Anyone have any ideas how I can get better at it?*
 
—–PS—–
Today I watched this and this.
If you’re not from the USA some of this show may be a bit of a culture shock, but the content is helpful. Easy to understand language and a lot of good info in a condensed form. 
And yeah – I think Brené Brown talks a lot of sense. (I’ve started a pinboard – any suggestions gratefully received.)
 
*not a rhetorical question. I really do need all the advice I can get…
 
 
OT – really looking forward to this šŸ™‚
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6 Comments

  1. Hi Sand

    I also find it a challenge to work out how much to share/talk about health. I do figure that your/my blog is yours/mine so therefore we have a right to write whatever we want (so long as it isn’t abusive to anyone). I remember once being inwardly quite judgemental about someone with ME who was going off on nice holidays. I am not proud of myself but realise it came from ignorance – have been similarly judgemental about migraines in the past. So I think the more people say they are managing life with these sort of invisible conditions, and talk about the effects, the less ignorant we
    will be as a society. For me I think also interspersing health stuff with non-health stuff is critical because there are many other aspects to me than being unwell. I have been thinking of doing a bit more explicit writing on health on my blog, including mental health.

    Pacing – erm, no tips given that I am not succeeding myself! Actually the main thing for me is noticing when I am starting to feel a little tired or in pain, and stop, which isn’t always practical. I reckon – and am going to start experimenting with this – that I can manage an hour of activity if I’ve rested, followed by half hour to an hour rest, and not do myself in for rest of day. More than that I seem to pretty much end up exhausted for rest of day. I can also still do the occasional full day of work training but this does have a big negative drain. It helps that I do have a hubby around at weekends to help – during the week he works long hours. The weird thing is that the tiredness seems to have become increasingly more of a problem, and yet my understanding is that fibromyalgia isn’t a ‘progressive’ condition.

    I will be taking a look at Brene’s clips with Oprah. I like her work.

    Take care

    • Peaks and troughs is what my GP always responds when I lament upon feeling worse than ever. But – she warned me that the surgery would take two years to recover from and that was before the NHS left me so long that I got REALLY sick. Plus I have hormones joining the party now, and i remain convinced that oestrogen has a part to play in Fibro. Have you any other health issues in the mix or increased stressors?
      I still suck at gauging when I’m reaching the point of payback because the adrenaline fogs things up so much. It seems to be –
      One ‘physical’ thing a day. Followed by at least one day of rest. Don’t be out of the house for more than two hours. Don’t do an activity inside the house for longer than 30 mins. But I struggle to keep to these…
      Thanks for the input re talking about illness. Yes, you’re right, it is my/our blog so I should write what I want. Writing about it helps me…plus I still have an almost evangelical desire to spread awareness about invisible illness. Which is why Christmas cards usually have some mention! Keeping folks as informed as possible. Though last year or so I’ve failed at that…

      Hope you have a happy Easter weekend. Sorry for the delay in replying šŸ™

      • My turn to apologise for delay. I have several injuries which cause problems pain-wise, polycystic ovaries, and then stressors are Bobby – bless him – sometimes work (though as I am doing very little now, that’s less of an issue!) and mentally ill parents which started when I was 11 with my mum. I’d say the latter has been the biggest contributing factor.

        • Never any need to apologise! šŸ˜‰
          I get the idea that any autoimmune illness always has lots of other illnesses to keep it company. Goes to show how punishing they are, how much stress they place on the system. Also interesting to note how much of a part stress plays in triggering these things…and making them worse.
          Sending healing vibes and (((hugs))) your way X

  2. Adriana

    I think it’s great that you’re willing to share your personal story Sandra. It really does make a difference by educating people about different illnesses. Keep sharing xx

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