“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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Oh Tanya
Welcome back, dear fiend! How I know that again of this illness. Pain again, depression again, exhaustion again, etc. again!! Praying for you!
Much love
Mia
I know that you know – feeling it with you… Xx
Dear Tanya, how very wearying and discouraging for you to not only find yourself in the same place health-wise that you keep returning to time and time again, but to be faced with the incompetent heartlessness of the medical system too. It is just heartbreaking. I am so sorry for this relapse in your symptoms and the distress it must be causing you. My own pattern used to include much of the same. Now there is no specific rhyme or reason about it cyclically. I really feel for you and the sheer mental weariness of facing it again as well as the weakness in your body. Praying for healing and restoration for you, my sweet friend, and for our Lord to draw close and just hold you safe until this storm subsides. Cling to those words He has spoken, His mercy new every morning. May you be comforted by His Presence, sustained by his grace and encompassed by His love always. Much love to you and yours
xx
Thank you so much for this prayer-soaked comment xx
Oh wow, what a terrible conversation! I so know the feeling – though this one is above and beyond… 18 months just to learn you’ve been lost in the system?! (I won’t be telling this story to those friends of mine who are just looking for a reason to scrap the whole NHS…). But on my own small scale, I know the feeling and am afraid my response is more inclined towards anger than the grace you express here. May God’s spirit stay with you…
Thank you! And yes, NHS… I have a bit of a love:hate relationship with it. On the one hand, the opaque administrative systems can be infuriating. On the other hand, it was very freeing when ringing for an ambulance to know that I only had to worry about whether I felt ill enough to go to hospital, not whether I had enough money, or if my insurance would cover it…
Blessings, love, hugs, and prayers dear one.
Thanks, Denise!
Oh POOS. That is so disheartening.
I rarely manage a call about medical stuff without crying – and that’s when I’m dealing with Mikey! Even when I rang to ask for help to deal with his verruca I CRIED! It’s just so charged with every worry and fear and even worse when your fears are confirmed and you realise you’re back to square one.
I have just prayed for patience for you, that knowing God knows you and your body perfectly and he hasn’t forgotten you or information about you might be a source of strength and I have prayed that God will intervene and get things speeding on. xxx
You know what? For some reason, you telling me you cry at medical stuff is SO comforting. Thank you! – for this and much else xx
Powerful post. “There is a familiarity and a weariness about the ‘again’s that make up so much of life.” I feel like that is where I am right now and I don’t know if it is just the beginning of a new year in a place I didn’t think I would be or the fact that I feel like God is being silent…again, but this resonated with me so much. Thank you for encouraging me and I am sorry for the battle that you are going through. I guess I would just say that God is going through it with you, if that offers any comfort.
Thanks for this post.
Thank you so much for standing with me…
This, on top of the exhaustion, seems too much. My prayers are with you, my friend! I hope they straighten things out without you having to go through the rigamorale of getting another referral!
Thank you, sweet lady!
Oh, Tanya. My heart just broke a bit for you. How frustrating! Yes, God’s mercies will see you through this but for now I join you in commiserating.
Thank you SO much, Leigh – I always feel so uplifted and supported by your words. Much love x
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.
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.
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.
so sorry!
Visiting from FMF… Love, Traci Michele @ Ordinary Inspirations
http://www.ordinaryinspirations.blogspot.com
Thanks traci. 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!!
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, 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
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.
ME specialist … What about Tanya Marlow?
God…. A special soul she is
ME specialist…. how will she deal with me losing her records
God… Oh She will want to kick your butt with her new boots but
ME specialist….. But what
God…. She won’t… She is classy and she will just cling
ME specialist….. Cling?
God….. Yes cling… to me… for I will see her through… with steadfast love that never ceases but may be hard to feel…. steadfast trust that I am with her always… even in the darkness… where she can not see me ….. I am there…. for she knows its true and she honors me with that faith… Yes she does
Reading this felt like a hug and a mug of hot chocolate. Thank you.
And Once Again,
I look
Upon the cross
where You died,
I’m humbled by your mercy and I’m
broken
inside.
Tanya, I hope that doesn’t sound twee/sanctimonious/self-righteous, etc.
Nor is it true that if we just focus on His cross our problems stop (2 Corinthians 11 would be shorter, for starters!)
But there is hope in our brokenness because of His brokenness.
And it’s got the word ‘again’ in it, which made me think of it
Love to you all.
Hey – I’m glad you rest this post – I was thinking about you and your many ‘agains’ of sleepless nights.
This once again song made me think of another once again song –
Here I am, once again
I pour out my heart for I know that you hear every cry
You are listening
No matter what shape my heart is in… Etc
Do you know it? It’s a good’un?