Letter to a Friend

How are you this week?
Pretty simple question – but here’s the thing…
I am not ok. I may never be ok again. This does not mean I do not hope. This does not mean I do not have happy moments, joy is so present. God is so present.
Just that I need to deal with my reality, because hoping for change every day and being disappointed is leaving me broken.
You see, I have realised that there is a problem in pretending to be fine – that people don’t see my reality. So here goes… I may look fine, with a smile on my face even. I may be laughing and joking and look totally normal – but know that it takes me an inordinate amount of effort to look ok (plus pain & anxiety meds too) It takes me days to recover from whatever it was we were doing when you saw me.
What the dr says I have is a chronic vestibular disorder that effects my nervous system (the inner ear, brain, spinal cord and nerves) Chronic means that it cannot be cured by medication and it MAY NEVER go away. Chronic means that it is with me all the time – even when I am pretending to be fine.
I get migraine’s, dizziness, I lose my sense of balance at times and my ears feel blocked making it hard to hear. I have fatigue unlike anything I have experienced… even being a mom of two little ones with my own business. I can have weeks and months where I have to fight just to get out of bed to get the kids to school knowing my day is going to be nothing more than the disappointment of climbing back under the covers. My vestibular system betrays me making movement, light and noise impossible to deal with at times.
I have had the darkest, loneliest, most painful year of my life. My thoughts have turned against me on too many occasions – trying to convince my heart that everyone would be better off without me, which I can’t deal with these dreadful symptoms another day… but GOD HAS ME. He always has me, even in my darkest moments… There is a purpose for this and I know I have strength, resilience, empathy and compassion now that could literally move mountains for Him! (Ha, if only I could get out of bed!)
Please hear me when I say I love you for caring… I know in your heart when you ask about my health. But it is so incredibly hard having to say I am STILL not well (remember chronic – this is not
going away or changing – the difference in what you see is when I have done nothing all week so I have the strength to pretend I am ok)
I promise you if my miracle happens and I get well – I will be shouting it from the rooftops… you will not miss it!
But, until then can we please talk about other things? Can we take the focus off my health and laugh together when I am well enough? I need these moments, I need to share in your life when I can, see the joy! Can we ask each other what made us smile this week instead of how are you? I love that you have stuck by me and there is so much good in this beautiful life God has given us, so much we can do to make a difference for others – so please let’s focus on that instead.
I know you care, I can see it in your eyes, I can feel it when you hug me tight…. but please don’t ask me how I am. It is so nice to just forget for a little while. So smile, ask how the kids are (or my huge puppy, my cheeky cat or what my fav show was this week, which pj’s I rocked) I need you to know even when I am absent, or quiet that I cherish you and love you too.
Love & Blessings always Your Chronically Unwell friend x