Mrs Overdone overdoing it again! Know when enough's enough?

Sorry if this post sounds a bit disjointed! (Or maybe that's a blessing!)

Today I'm rather sick to sit for long. My stomach is nauseous; ears ringing; can't tolerate much light or sound; wrists, arms, chest sore; stabbing pains in my hips; palpitations; burning and shivering; tender glands; voice weak and absent at times. Can't concentrate to remember what I'm supposed to be doing from one minute to the next.

Slept until almost lunch time today. Slept a lot of yesterday too. Mum called in with lunch to make sure I got something to eat and to check I was OK blood sugar wise.

No wonder really. This is real payback time after the weekend.

I managed to finish filling in my ESA50 and sent it off last Friday. I had intended pacing myself to get it fully completed without need for haste, ready for the stated deadline 8th December. That's what the letter accompanying the form said. Then last Thursday another bullying letter from ATOS. Yes, I know it's routine, but it nearly imploded me from the shock. Thursday's "form" reminder to say they hadn't yet received the form stated I risked losing benefits if I didn't return the form by 1st December!! 1st December! Was this a mistake? A trick? My mind was racing. Thank goodness I'd made a good start already, but it still meant some rushing to finish.

I used the blank section of the ESA50 intended for you to explain if you are returning the form late. Only I said it wasn't late. I fully explained the effect on someone with a chronic illness where rest and pacing is essential, of having this sudden change of deadline in mid claim. I said if they didn't move the goalposts without explanation a second time, the form should be with them by the 1st. That may disqualify me immediately for being "non compliant" to their nonsense. At least I'll be going down fighting! I did add a "thank you," more in keeping with my normal courtesy at the end of this section. I know I'm not alone in finding their duplicity utterly infuriating.

That left less than the planned period of rest leading up to Sunday's long-established commitment to take the Advent service at my local church. I had a lift there and kneelers stacked on the pulpit seat to help support me to sit at times and still be seen from the back. I had members of the congregation doing all the readings and lighting the first Advent candle in the Advent Crown. I had my stick with me to balance for the prayer of dedication over the collection plates (even then, the stewards said they were worried I looked wobbly enough to drop them!) and for coming forward to the altar rail to share the words of blessing at the end of the service. I'd had all my words written down in case of brain fog meltdown and losing my train of thought. Even with all these props in place, plus a powerful radio mic, as soon as the service was over, I hadn't much voice left for greeting people on the door afterwards. I had to slump against the wall and then sit again to make it through.

As I've said before, although it seems frustrating to be able to do so little and so seldom, I'm just so thankful to do this at least, no matter what the cost in relapsing afterwards. I always seem to have just enough resources (not from my own strength, for sure!) to do what I believe I'm called to fulfil. People here know me and most understand a little more about M.E. now, so I'm very thankful for their support, love and help.

New friends, the daughter and granddaughter of a dear couple of friends in this congregation, were visiting from Scotland and came to the service. It was wonderful to meet them, if only briefly, after the service. My friends' lovely granddaughter is a young teenager who has also had M.E. since 2008. Now she is able to attend school part-time, even though I know it must be such a struggle for her at times. She must make her family so proud! It felt good for us to meet, with her lovely mum, after long comparing notes of our situations through M.E. via her grandparents. Like me, I think she finds writing a great outlet and a joy that can be enjoyed on days when more energetic pursuits are ruled out.

I had also been invited later to other friends' Golden wedding celebrations. Ideally it would have been on a day when I wasn't doing another huge challenge, but life doesn't come with pacing built in, does it? Anniversaries come when they come, don't they? All my friends at this beautiful event completely understood my health problems, and helped to make the day as easy as possible for me, including lifts, rests etc. After lunch we had a time of photos, laughter and reminiscences back at the home of my friends' daughter. I enjoyed every minute and treasure every second.

No wonder, though, that post-exertional malaise and all the attendant symptoms are now catching up on me with a vengeance. I feel like I've been running up Mount Everest while being run over by a steam roller! More than worth it, though. I'm just very thankful I've no other major commitments this week as I try to recover! Winter may be playing its part with wind and wetness, cold and chilliness making it more of a struggle to keep well. I'm constantly fighting viral symptoms at the moment. But there are happy memories to enjoy and so much to be grateful for!

On a world scale, there's more good news from Norway. After the encouraging trials of Rituximab in the treatment of CFS (however they are actually defining it), and their Government's apology to M.E. patients for the lack of awareness and treatment in the past, comes real positive action. The Norwegian Health Minister Anne-Grete Strom-Erichsen pledges 2 million krone to the two doctors involved for further research, as well as promising a national M.E. centre in Oslo!

If only sorry wasn't such a dirty word to the UK powers-that-be. Please catch up, UK! We're still here, struggling. Advent is a time of hopeful preparation. That makes my spirit sing with joy and celebrate everything around me as miracle and gift.  But medically, bodily, even pacing shouldn't justify the medical profession and politicians  keeping us waiting  for ever, if it's in their power and possibility to be faithful to those they care for!

Something for the Weekend! (But Monday's a non-starter!)

 On Sunday I was planned to lead worship at a church where the congregation understands more than most about M.E.


Not only have they lost a full-time minister in their circuit to the disease, i.e. me, but one of their own beloved local worship leaders in the congregation also has M.E.


She and I discussed how we were both doing at the moment, comparing the muscle pain that makes even wearing a bra uncomfortable when the chest, diaphragm and stomach feel swollen with poison.

 We talked as only those who really undestand can, about those IBS-like symptoms and those days when even though you can get up, appetite is nil. Contemplating the complex processes of fancying food, preparing it, cooking it and having the strength left to lift fork to lips to eat it, is just one step too far!

 Overdoing things, plus passing viruses always end up flooring us both, in spite of our positive attitudes. People know us both too well in our church communities to imagine it's all in our minds, thank goodness! (Though we've both had more than enough of that attitude from elsewhere including medics!)


It was a "relatively" better day for us both. Relatively better, of course, or I couldn't have been there to take the service, nor she to be in the congregration! I was leading my one brief hour of worship per month at her church. I still can't manage any more. 

 Being there for Sunday meant I couldn't be at the circuit preachers' meeting for fellowship the following day. I can't do things day after day, still, or my body can't recoup what it loses with each effort. Since then I've been virtually housebound and sleeping for England, trying to recover. My throat's now sore and glands swollen with that brief hour of projecting, laughing, sharing, chatting, concentrating. My muscles are spasming now at the slightest move and I feel like I've just swum a polluted Thames with David Walliams this weekend! (I wish! Well done, that man!)

 My aim is now to gradually recover enough to manage something similar (preach not swim, silly!) at another church some time next month, and if all goes to plan, the month after too. We talked about how this itself was a fantastic thing to be thankful for, compared to early days when I could hardly stand and speak at the same time at all, let alone every so often on a good day. 


She had had a particularly bad time the previous week and still looked as washed out and doddery as me! (We are both in our middle years, rather than the pensioners our bodies take us for!).

When I talked to friends in the congregation that I hadn't seen for over a year, how I'm planning to raise funds for Invest in ME for my 50th birthday next month, a few asked if I had thought of talking to the Circuit Admin Assistant about it? Why not publicise this more widely, considering how many people know me from my ministry in the area in past years?


I hadn't actually thouught of that. I always feel very reluctant to push any cause related to myself, but it all fell into place as a possibility when several folks enthusiastically went on to remind about the Circuit newsletter which has regular circulation round all the different Methodist Churches in our area and has a readership beyond the pews.

 So that's next. When strength returns a bit! I'll contact the editors soon so it can be mentioned (warmly!) there, with links to the charity and to my fundraising page

Joyce's 50th Birthday Gift 4 M.E.


I really think this will help many people who know people with M.E. like myself and the worship leader, to have a chance to do something positive.


In spite of being completely wiped out by going to church this weekend, even with a door to door lift and wonderful support all the way, it was a true blessing as always. I usually don't even have the health to walk to my own local church round the corner! Many were touched and reached by my message, they said, and being in the right place at the right time, for me, the congregation's suggestions might just have unseen ripples into the future for everyone with this devastating disease.

Fair Warning: Coping With Unexpected Visitors

I really appreciate all my lovely friends and followers online, who make every day brighter with communication that can be paced as needed, since most of us really understand M.E. and are in a similar boat.

Real friends love us for who we really are

I really appreciate other IRL (In Real Life) friends and people, too. The closest of these usually understand that ideally I need fair warning of visits, calls, etc so I can save up some "spoonie" energy to make the most of them, if at all possible.


Not everyone does make allowances, of course.  It's so difficult for the energy-rich to get their heads round the idea of "pacing". Heaven knows, it's hard enough for us to get our heads round, isn't it? Newly diagnosed or old soldiers in the field of M.E. or other challenging illnesses alike, we can find this "pacing" lark a stumbling block when faced with chaotic old "real life". (My spellchecking just discovered that I'd originally typed "fiend of M.E." instead of "field" there - a Freudian slip, eh, guys?)

Eaten by the monster of M.E.?

I can't blame friends who want to do things with me "on spec". I don't blame them. How could I? I love them and would never want to snub or hurt them! They make life worth living, even at the toughest times when I can't see them at all.

Friends - something to celebrate and treasure! But that does mean energy outlay!

When they see me, it's because I'm strong enough to see them. I guess it's harder for them to picture me after they've gone, or I'm back indoors etc, exhausted and nigh-on catatonic with post-exertional malaise and sickening pain and nausea.

They're off again, by then, getting on with their own busy lives, unaware what it's cost me to spend some time being "my old normal self" for a bit! I would rather it was this way round than them never coming or contacting or doing something off the cuff for fear of making me ill! That wouldn't be living at all, like times when I'm housebound altogether through illness. 

Real life doesn't always support "pacing". It's full of spontaneity and serendipity. Just like me at my best!

A mate of my Mum's gave a sticker to all the lasses in their little prayer and fellowship group that I'm sometimes physically a part of, when I'm well enough to make the two bus journeys that lie between our villages. It's one of those yellow stickers sponsored by the South Yorkshire Police (and no doubt other forces round the country) that warns door-knockers:

"DOORSTOPPERS: SAY NO TO DOORSTEP CALLERS.
We will NOT buy at this doorstep from doorstep callers...
...if you don't have an appointment THEN DON'T BOTHER KNOCKING"

I'd had it stuck on the door less than a day when two separate doorstep hawkers knocked as usual. Nobody reads it. I still struggle to the door if I can (usually if I ignore it it'll turn out to be a colleague or friend, by sod's law, a bit like phone calls!)


Being an accommodating sunny soul, I usually find myself having the conversation about unwanted double glazing or the unwelcome switch of utility company anyway, when I'm well enough to stand and talk at the same time. The only time I respectfully pointed out the yellow notice, the young guy outside in the rain looked so crushed, it was me who felt bad for hours after! 

It's afterwards, frazzled and slumped that I'll passive-aggressively remember why many would just have grumpily gesticulated at the notice and slammed the door. (If you knew me in real life, you'd realise that is just NEVER going to happen!). So I end up looking like this instead:

The only folks who seem to read the warning are visiting friends or colleagues from church who laugh and say, as I let them in:


"Hahaha - should I go away again? I haven't got an appointment!"


I guess the hint's never taken by the people who actually DO rob and bankrupt energy like a vacuum sucking up crumbs! This notice says nothing about illness on it, of course. Maybe there are so many stickers about from "Beware of the Dog" to "Wet Paint" that door-to-door workers simply filter them all out?

OK. Maybe not...

I'd rather NOT put anything about my illness on the outside of my house, apart from 'M.E. Awareness' posters that don't identify me as an M.E. sufferer. Believe me, that's not because I'm ashamed. Simply because I don't want to make myself more vulnerable to opportunists. 

Well, this morning's energy is already accounted for in blogging (and all the checking, rechecking, blurred vision, rests, false starts, rechecking, rechecking, correcting, losing it all by accident etc that entails!). I had to save a thimbleful of energy "spoons" today, as it's Thursday, to put out the recycling bin. Then the box. Then the bag for newspapers. Not all at once! Mercifully I don't have much in any of them this week. But summer's going fast, and I can't afford not to have the green bin emptied, ready for any moment between raindrops when my Mum can help with the mowing and I happen to have the strength to dead-head a rose!

Somebody else with the same idea!

So that's me spent for now. People think my doorbell is disconnected as a joke. As if! We need to keep our energy recycled too!


Fair warning. Can't say fairer than that?

 Please can I recycle my energy and cells while we're at it?

Always something to be thankful for

This past fortnight or so, just typing at the laptop, sometimes just reaching the keyboard has made me so sick and weak I can't keep up. Let alone cooking. Cleaning out the fish. Answering door/phone to perky dead-eyed salespeople hired not to tell you what they're actually flogging. Standing and speaking at the same time. Remembering what I'm supposed to have just got ready to do. (Living, we often call it!)

My ears are ringing, my eyes feel blow-torched. Muscles jerky and painful. Breaths in and out exhausting as my chest muscles/diaphragm (3 tries to spell that by stages!) are so painful, weak, burning. Yet can't get warm even with heating on (while I can still afford to put it on!). Spirit willing? Tick. Concentration/ co-ordination? Nil.

I try to read to research and plot my novel I so want to motor on with during November's NaNoWriMo mentioned in my last post. I can't make sense of anything, even simple stuff, most of the time at the mo. Thank the Lord for the times I can get on a bit.


I try to birdwatch. My forearms quickly grow too shaky and sick to raise the binoculars. Eyes won't focus or bear the beautiful autumn sunshine. Thanks the Lord I can hear them singing though, sweet as symphonies!

My fault. Agreed to take service I promised months ago and determined to carry through with my resolve. Went to friend's funeral the same week and after a disoreintating busride, was cuddled and chatted to death by dear friends I hadn't seen since I collapsed 5 years ago, from one of my old churches. They'd missed me. I'd missed them. I made it to the afternoon and have been crashed most days since. Silly enough to have my birthday this month too. Overkill!


Doing stuff when I can. Having to put the lights out and curl up to catch up on frazzled sleep when I can't.

"Pacing!" the whispered reminder comes from the few who understand. I know, I croak. It's just that life doesn't....

Blood sugars all over place. Hypo or hyper 90% of time. (Just took me a second try to spot where the "%" was hiding on my supposedly familiar keyboard.). Sugars erratic from stressed-out immune system fighting unseen infections. Not doughnuts.

That's enough for today.

But it's something!