“Can you please tell me how to get in touch with my local ME specialist? I know the files were being transferred to a new system last year, but I was meant to see him last March, and haven’t heard anything and…”
I stop before the emotion catches up with me: pause, concentrate on my breathing, the rest of the words, unsaid, flowing through my mind.
That I can’t breathe properly when I try and walk, that again my heart is again being peculiar, that again I am needing to be almost completely bedbound, that again I feel helpless and abandoned by the medical profession.
It is becoming a familiar pattern, around January-March each year. I was hoping it might be different this year. You tell yourself – maybe the Vitamin D tablets I’ve been taking, they might be the thing that will avoid the relapse this year. I’m doing better this year, maybe I’ll escape it. Maybe it’s a temporary blip rather than a major crash.
“Um…” Her voice sounds hesitant and apologetic. “I’m really sorry about this. We’ve lost your notes. The only way to access your specialist is to start over again and re-register as a new patient. You’ll have to ask your GP to fill in the forms and send off for the blood tests.”
I hold the phone, trying to process this information.
“But I’ve been in the system for 7 years. I’ve been waiting for a follow-up appointment for 18 months. I’ve been waiting for you to get in touch with me… I haven’t seen my specialist for 18 months.”
“I’m very sorry,” she repeats.
******
There is a familiarity and a weariness about the ‘again’s that make up so much of life. The early morning commute or the middle-of-the-night wakings or the pain of family arguments – these things are a part of the everyday.
******
The steadfast love of the Lord never ceases; His mercies never come to an end, they are new every morning. (Lam 3:23, paraphrased).
I cling to the words; the love that endures, the mercies that flow again and again.
In case you missed my latest updates on my health they are here and here.
This was my best five minutes on ‘again’.
Over to you:
- What are your ‘agains’ at the moment? In which areas of life are you reaching for God’s mercy?
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Lots of agains. One psychologist I read said that to be fed up at relapse is normal, to just be passive and not care is a sign of something being seriously wrong. Somehow we learn to surf the waves not be crushed by them. xx
Surfing the waves and not crushed by them – I love this.thank you.
oh, Tanya, I am so sorry…it must be hard…praying right now that you will get an appt with a specialist asap.
Thanks so much for such a specific prayer – much appreciated xx
Wow, God bless you and your journey. Being sick and bedbound is really hard. I have been there. You are a true warrior. Cheers. Click here to check out my 5 Minute Friday
Thank you! Lovely to connect with you x
Oh, Tanya, how heartbreaking! You’ve been in my thoughts often lately. It was so nice to see a post by you. But I’m so sorry for what you are going through.
I don’t think I’ll get around to writing a post today, but I was thinking about my agains and how drainingly repetitive it can be at home with young kids. But I was also thinking about being intentional about noticing all the good agains. The hundred hugs I get every day from the youngest, how the middle loves to smile sweetly at me and say, “Mom, you’re the best.” and how the oldest will stop everything he’s doing many times each day just to run and tell me what’s going on.
Hopefully I can start to focus on the good agains that I have daily since I know i’m good at focusing on the tedious one.s
Thank you so much for stopping by – your words always cheer me! And you MUST turn that into a five-minute post – I so loved that thought – the happy agains. It’s made me think of my happy agains, my boy announcing ‘it’s MORNING time!’ whenever he wakes up from a sleep (either morning or afternoon). Love your perspective on things! Get writing, girl – you have things to say, and they’re good! Xx
Alright, I wasn’t going to, but I can hardly keep encouraging you to write and then ignore you if you do it back. Here ya go – except it’s basically the comment I already wrote, so you may feel a bit of deja vu.
http://inthetangles.blogspot.com/2013/01/five-minute-friday-um-saturday-again.html
And SO glad you did!!
so sorry!
Visiting from FMF… Love, Traci Michele @ Ordinary Inspirations
http://www.ordinaryinspirations.blogspot.com
Thanks traci. X
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
So frustrating…
I’ve had a rough patch ‘again’ since the begininning of the new year. And I’ve have my muscle twitches for the first time in several months. My first thoughts were – not ‘again’…
Thankfully I’ve had a better week this week and only one bout of twitches.
Do you have a lightbox for these dark days? My one helps me have a boost in the mornings.
I’ve been thinking of you as you go through this rough patch. Really frustrating – yes to the ‘not again!’ A friend of mine has had a bad relapse after six years of being much better – and that’s hard, really hard.
I’m really glad you’re getting there – will pray it continues!
Thanks for the prayers 🙂 Praying for you too.
Thank you.
I so know that feeling… although I appreciate it doesn’t help to know that there are other people trying to access ME support also being lost in the system. I’m sorry you have to endure this alongside the limitations of your own health, praying for you.
Ach. Yes, it’s gutting hearing similar (and worse) stories. I think in a way it’s more frustrating to hear stories about others than to go through it yourself – you can feel so powerless. Thank you for praying – we have one who advocates for us.
I am so sorry, friend. For all of it. I’m glad you bought the boots, I’m glad you are ministering so very deep to the heart of me and so many others, but today I know this just aches in an infuriating hopeless way. I have no words, just love and prayers I’m sending your way.
I felt a little tearful reading this, in a good and healing way. Thank you, dear Alia.