Saturday, 28 September 2013

Restored vision, nausea & tube feeding

I can see again!!!!!! Thanks to my maxillofacial consultant, my vision problems were identified as medication-related; I came off my nausea medications and my vision is now completely back to normal. Such a huge relief!!

But yes, you read right- I came off my nausea medications.. And some of you probably remember the mess I was in before starting on these meds.. My nausea is inexplicably horrible, and I was in a bad way with it. Unfortunately it's flared up with a vengeance! The nausea meds were definitely working to some extent even though they were far from perfect, and it's tough without them. Certainly not worth the vision problems though!

Now I'm starting to think seriously about tube feeding. It's been mentioned twice now by my dietician. When it was first mentioned I was totally against the idea and found the thought of it terrifying and horrific, but I am slowly warming to the idea. It would mean I wouldn't have to worry so much about eating and trying to keep my weight up. Obviously it would be far from ideal, and would take quite some getting used to, but I'm running out of options.

Not being able to eat normally is making me feel quite low at times. The nausea is oppressive and I'm starting to feel overly-emotional because the nausea is horrible, I can't comfort eat and I'm running practically on empty. I think it's starting to make me feel even more ill. Force feeding myself is so hard and unpleasant, so maybe tube feeding would make things easier.

I just don't know how to feel about things at the moment. I feel so ill and so different. My emotions are all over the place. Distraction works well and Uni is a fantastic distraction but you can't permanently escape from your own feelings.

I am planning to see my GP this week but I don't even know what to say. I'm not even sure I can face starting new nausea meds again, but I can't stand the nausea either. I just feel lost.

My legs hurt, my arms hurt, my throat and my eyes are sore, I feel horrifically nauseous, I've been resting all day and feel no better; sometimes it's hard to look on the bright side.

Jess overly-tired + struggling to eat = not a good combination.

It's been a really exhausting week. I should be grateful though that I can see again and I'm on less medications, so there are little reasons for hope.

If anybody does have experience of tube feeding, I'd be really interested to hear what it was like to manage with. I'm still really hoping I don't have to go down that route, but it would be good to have some idea what I would be facing.

3 comments:

  1. I am so sorry you are going through this. Do they have any idea what is causing the nausea?

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    1. Thanks Julie. It's assumed to be as a direct consequence of my CFS because I've had it since my symptoms started, although admittedly nowhere near to the severity it's at now. I don't know whether they'll decide to investigate it further or not- I don't think it's normal to have nausea quite so severe with moderate CFS, but it's an unpredictable illness, so I don't know whether it's simply the CFS or something else additional going on.. It makes it really hard to treat when the mechanism is unknown though!

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  2. I'm not sure what kind of tube feeding you are talking about; a tube down the throat or one into your stomach? My Granny had surgery on her throat and had to have a stomach tube for a while after. She hated not being able to eat, but she found it easy to use the tube and said it saved her loads of money with not having to buy food! It is also far quicker than eating a meal, which I guess would help you save some energy.

    The only thing to bear in mind is that there is a risk of the tube site becoming infected, which would be another thing to deal with.

    Hope that helps.

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