I hate How Much This Illness Steals My Life. 

Plate with personalised napkin

I greatly regret and dislike how this Chronic illness of MECFS, Spinal Stenosis, and Fibromylagia dominates my life and takes so much away from me. This past weekend was my youngest brother's wedding. It was a long day, starting early in the morning and returning home quite late. Despite the length of the day, it was truly delightful. The wedding was beautiful, and my daughter took on the role of a bridesmaid. My sons had quite a bit to drink, which added to the fun.

I mostly observed people and chatted with my family while also enjoying watching everyone dance (people-watching is becoming my new fav hobby). But, I can no longer dance myself due to my chronic illness.

This chronic illness has stolen the ability to dance away from me, and this is just one of many things it has stolen from me.

Unfortunately, but not surprisingly, the entire day has caused me to have a ‘crash’, leaving me struggling with my health for the remainder of the week. There are times I can’t even make it to bed, and when I do, my body insists on shutting down. My vision becomes incredibly blurry, making it uncomfortable to watch TV or look at screens. It’s painful to lift my arms, and I find it hard to keep my eyes open in the afternoon; they feel so painfully heavy. My husband urges me to go to bed and rest. I want to resist, but I know that fighting it will only worsen and prolong the recovery. The one key treatment for MECFS is rest, rest, and rest.

This illness steals so much from my life. This week, I’m focused on recovering from the weekend. But, I lay here in frustration as I wish I could go to the garden centre with my husband to look at Christmas decorations, maybe enjoy a lunch out, or even take a short walk. But physically, my body won’t allow it, and I’m unable to do any of that. One beautiful wedding day meant it sacrificed at least a week from me. It was totally worth it, and I loved the day, but it makes me so frustratingly angry about why there has to be a sacrifice in the first place and how much this chronic illness steals from me.

About me

I am a married mother of four children. One of those four children is our granddaughter, for whom we are SGO (legal guardians)/kinship carers. I run a small business and enjoy writing, so I blog. My blog focuses on my family life as well as my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.  Oh, and I am only in my mid-40s.

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