Living with M.E 

It would be remiss of me to not write a post about ME in the month of May, ME Awareness month.

I’ve lived with it for 8 years and come across people regularly who have no idea what it is or how it affects those who have it. Even people who are close to me, who have seen the impact of ME on my life, have little clue as to its true nature.

My new ‘normal’ and “I’m ok thanks” is a far cry from healthy. 8 years of living with a chronic illness and I’ve learned to adjust to a level of symptoms that would have had me in bed at the beginning. I remember having sick days from work and feeling so poorly I would wrap myself in a duvet and lay on the couch. This level of poorliness is now a very good day and I can function fairly well.

For 99.9% of the time there are many other symptoms added (different types of pain, headaches, nausea, fatigue, light and sound sensitivity, difficulty regulating body temperature, tingling in hands and feet – to name a few) and my body feels like it’s weighted down by lead so all movement takes Herculean effort. I can’t think like I used to either, it’s called brain fog – I forget things; I listen but can’t make out what has been said; I read but don’t take in what I’ve read; I can’t cope if too much is going on at one time. It’s like I’m dealing with all the pain and other symptoms that they make it difficult to focus on anything else.

Becoming ill was hard, my life changed completely and I grieved it’s loss. However, time is a healer and slowly you adjust to the new life and limitations. What I haven’t adjusted to is being dependant. My heart sinks when I have to ask my husband, family members or friends to add to their already busy lives. It’s only through sheer necessity that I ask for help, but that doesn’t make it easier.

8 years of living with ME has rocked the confidence that took me 20 years to gain. My mind and my body are unreliable and so I become anxious at the thought of responsibility and having to let people down. If I go out it has to be with somebody who knows and understands my limits and who I feel comfortable with  asking for and accepting their help.

Over the years I’ve made new friends and it’s hard that they don’t know the old me, the person I still feel like inside. The person who was bubbly, energetic, hard working, confident, helpful. I am that person still, even if my body won’t allow it.

Everyday I wake up and make the arduous journey out of bed ready for another day of relentless symptoms. BUT, I can’t finish the post like that…

Without ME I would never have known the greatness of the man I married. How caring, giving and selfless he is, how he chooses to be with me everyday and how he makes me feel like a blessing, not a burden. A true hero.

I would never have known the depth of the love my parents have for me, who continue to sacrifice and care for me and help with my children. And my sister who spends most of her days helping me in one form or another. 

I would never have known the depths of my love for my children and the effort and ‘spoons’ I willingly give to them.

I would never have known the kindness and generosity of friends and family.  Always willing to lend a helping hand or a sympathetic ear.

I would never have known the courage and strength I have!


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