For the first time in a long time my M.E. has taken second place to the condition of my son. I've not known what to write in my blog because my mind is constantly on 'reflux'. I'm a 'reflux mum' now as well as an M.E mum.
Caring for a refluxer means
1) Keeping him upright after every feed. This means carrying him, as baby bouncers and walkers can aggravate his digestion because of the pressure.
2) Pacing the floor holding him in upright positions trying to get him to sleep, but eventually feeding him off to sleep as only the milk will soothe the acid indigestion that arises.
3) Holding him in an upright or side laying position whilst sleeping - day and night.
4) Only getting 40-60 mins sleep at a time and then nursing him back off to sleep by soothing his tummy and throat.
There's more involved, but the list is to show the physical requirements of dealing with a child with reflux, so its not surprising my condition has deteriorated somewhat.
A friend asked me what M.E felt like the other day. At first I wanted to say it feels like the flu. But then I remembered going on a hiking trip in Utah a few summers ago. When we had hiked the mountain for a few hours in the heat I became light headed, My unfit body was weary, heavy and slow to move and my muscles ached. I thought this described how I felt every time I do something. If I do too much it also feels like I have the flu (without the runny nose). My glands swell and I can't regulate body temperature so I feel either hot or cold.
Every day I climb that mountain now. I have to, I have children to take care of. But thankfully, I don't have to do this alone. So many angels in the form of family and friends give me a hand to hold as I climb.
I clicked on your blog randomly at mormonmommy blogs, and I am so glad I did! After my son was born I was diagnosed with fibromyalgia, and later CFS (and still later, lyme disease, though that is another story). At the same time my son had severe reflux. That period of time was one of the most difficult I have ever had. I can relate to your experience, though at that time I was still fairly functional. Thanks for sharing your thoughts.
ReplyDeleteHi Shelley! Thank you so much for commenting, I'm sorry for not replying sooner, I keep forgetting to check my google email which informs me of comments. Are you still suffering quite badly now?
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