A Change of Plan

I hate having to change plans. I hate it, I hate it, I hate it.

Don’t get me wrong, I’m as flexible and spontaneous as the next (chronically ill) person. But when I have to change plans because of my illness I hate it. It doesn’t feel like a fair choice. It feels like my hand is being forced.

And that’s where I am this weekend. I have had to change our plans for the weekend because my stupid stupid body is not playing ball.

It is Mr B’s birthday on Friday and his Mum and Grandad are making the trip from Shropshire to London tomorrow for a family Sunday lunch to celebrate his birthday. The plan already revolved around me and my stupid body even though it is not my occasion. Mr B’s brother and sister both live in London too, and we were all to meet at our place and then go for Sunday lunch at our local pub. We were doing it local to us so that I didn’t have to provoke my beastly body by travelling too far. Even when it was Mr B’s sister’s birthday earlier in the year we met at our place and went to our local pub to accommodate my limited energy needs. I hate that it always has to be about me because of my ME/CFS.

And now I have been forced to change the plan; to bow out from the Sunday lunch at the pub thanks to my body’s decision to inflict flaring fatigue, heavy pain, burning achiness, dizziness and headaches of higher proportions than is my bearable ‘usual’ level. So yes, I will not be going to lunch with Mr B and his family. Instead I will be staying at home resting on the sofa.

Mr B’s Mum is so understanding and suggested we just have take away at our place to save me the effort of going out. But Mr B and I fear even that will be too much for me right now. After an hour of chatting and socialising I wilt at the best of times never mind when I am mid flare. So we have compromised with my body and everyone is going to come here for coffee before heading out for lunch. This is hopefully enough to pacify my body and quell any retaliation from ME/CFS. I will not play hostess (have well and truly given up on that by this point, my friends are well used to making their own cups of tea when they visit). I will merely sit and chat for a little bit so I get to see Mr B’s family and then I will rest.

I’m telling myself that this is better for everyone all round. Eating out with my long list of food intolerances is a little (haha, understatement of the year, massively, gigantically) tricky and requires energy enough to decipher the menu and discuss my requirements persistently with the wait staff. Nothing like spoiling a meal out with a barrage of 20 questions about traces of ingredients, checking this, checking that, all for just one roast lunch.

But I hate having to change plans. I feel bad and guilty for having messed up the plan. I feel sad that I’m missing out. But more I am annoyed. Annoyed with myself. I feel like I’ve failed at managing this illness. After 3 years I thought I’d got the hang of it. But no, still there are curve balls that throw me out of whack.

I totally underestimated the impact of the mini break away in Sussex last week. Even though I didn’t push myself and do too much whilst there, or so I thought,; even though I stuck to my diet; even though I used my wheelchair when out and about; even though…..the list goes on. And now there is no point dwelling on it. That is a waste of energy. And as you know energy is in limited supply around here. Learn the lesson, rest lots and move on. The flu jab shenanigans at the start of this week have just compounded things. Two outings in two days was never going to end well. And on the back of last week’s trip away, I am now forced to admit, ‘what was I thinking’?!

I naively thought, despite my consultant’s firm warnings, the flu vaccination itself wouldn’t affect my poor body. I thought if I did have any side effects from it, they would be full blown flu or nothing at all. But of course that’s silly. There are fifty shades of grey after all. And thank God, touch wood three times, throw salt over my shoulder etc, I do not have full blown flu as a result of the jab. But I do have something. The achiness and sore throat is not ‘just’ ME/CFS. But lets hope that my shade of grey does not getting any darker. And by taking it easy and not going for lunch I quell the tide.

But no point stressing or dwelling about it. I am where I am. Learn the lesson; file it way ready for next time and move on. There were reasons for getting the flu jab this week, which I won’t bore you with right now. Suffice it to say it had to be done this week.

Sometimes that’s just the way it is. I haven’t mismanaged anything. I have just tried to make the best and do the best in a precarious situation.

No point stressing about it. Learn the lesson so you avoid future repetition and rest so that in the not too distant future you are well enough to move on; to pick up the pieces and start again.

I think I need this mantra on audio loop or plastered all over the white walls of our apartment, maybe then I’ll stop and believe it.

A Little Holiday Update From The Pool Side

Cooling off with a dip in the pool. Photo by Jess B.

Hello from La Dordogne in France! I’m writing this from my sun lounger by the pool side 🙂

Photo by Jess B.

We have been here just over a week and are having an utterly blissful time. Our days are made up of laying by the pool, me in the shade of a big umbrella whilst Mr B bakes himself in the sun, delicious simple food cooked on the BBQ and lots of meditation rest breaks for me back in the coolness of the house. My only other activity is little dips in the cool refreshing water of our swimming pool and the odd bit of yoga outside on the grass every so often so my body doesn’t completely forget how to down dog.

We’ve gone with my family to the local market town Martel a couple of times for a little wander around the market stocking up on fresh olives and fruits, walnuts and saucisson (regional specialities) and plenty of smelly cheese and super fresh crunchy French baguettes. Oh how I do love a good French market! Mr B has done a sterling job of pushing me in my wheelchair across the cobbles and up the slopes of the winding streets, very nearly expiring in the 35 degree + heat!

But most of the time we are content just to rest and relax by the pool in the tranquil gardens of our holiday home.

Photo by Jess B.

Little miss ME/CFS is being moderately well behaved. The travel didn’t catch up with me straight away. The little minx lulled me into a bit of a false sense of security and the post travel fatigue didn’t kick in for a few days. I’m definitely more tired than my usual and myalgia pain has spiked a couple of times leaving me feeling really crappy. But with nothing more to do than to lay in the shade and rest, things could be a lot worse.

Other than eating more meat than usual – barbecued vegetables just aren’t the same – I am being very, in fact amazingly, good food wise. Not a single crusty bread crumb or morsel of cheese has passed my lips. Tho at breakfast today I did hold Mr B’s pain au chocolat up to my nose and inhale deeply the rich gorgeous chocolate buttery smell of freshly baked French goodness! He didn’t seem too keen on eating it after that, can’t imagine why!

Right time for me to sign off and get back to my snoozing by the pool.

Happy summer holidays everyone.

What Do You Do All Day??

No time or energy for clock watching. Photo source Crass via Morgue File

People often ask me “what do you do all day?”

This is a perfectly valid question. People don’t always grasp what it’s like to be at home all day everyday and not well enough to go out to work or in fact to go out much at all. And why would they? Until you live through this chronic illness at home existence, it is pretty alien to understand.

To me it seems the “what do you do all day” question generally implies one of two things:
– do you not get bored? It must be so boring being at home all the time…
– you’re so lucky (yes really) it must be great to be able to watch day time telly / do lots of things round the house…

I’ll deal with the second one first as that’s the more idiotic and deserves nothing short of a thorough stamping out. Firstly day time TV is the pits (save for when Wimbledon or the Tour De France is on wall to wall) Spend a few days watching endless chat shows, Location Location and Come Dine reruns and then you’ll reach boredom levels like never before. You’ll want to poke your eye out rather than turn on the TV. Trust me. I’ve been there. It makes you (well it makes me feel) depressed and desperate, two feelings I do my utmost to avoid.

That said day time TV has its place. For me it was the only thing I was capable of ‘doing’ in the first months of my illness. I literally didn’t have the energy to read a book so day time tv was on essentially as company and just washed over me (see I’m not contradicting myself, I wasn’t well enough to actively engage with the TV at that time). But once my head started to come back to life wall to wall day time TV was more than I could bare. Besides which too much screen / TV time gives me a very fuggy and tired head, that’s on a good day, on a bad day it can cause a full blown migraine headache. So yes, day time TV is not my first choice way of spending my time.

Day time TV rant over…moving on…

As for being able to do lots of things round the house. My answer to this is basically I WISH. I can barely unload the dishwasher without needing to have a rest. Washing my hair is a high energy activity. So doing lots of stuff around the house? Mmm not so much.

Now onto the boredom factor. Well my answer is simple. I don’t really have the time or energy to feel bored. When you have to break up your day with as many rests (lying down, blindfold on, noise cancellation headphones, meditation track filtering into my ears for 15 – 60 minutes at a time) as I need to get through the day in one piece, you honestly don’t have time to be bored. My days don’t drag. Time flies. It literally disappears.

So back to the question that sparked all this: what do I do all day?

Well folks, I have a daily routine that I follow day in day out on the days when I am just at home, which lets face it is most days.

If I do go out I bend and fit the routine around the outing. The outing becomes the only ‘activity’ that I do that day i.e. if at all possible I wouldn’t wash my hair or shave my legs (yes even shaving is tiring and no, I do not have super hairy legs) on a day I was going out. I’d have a really quick shower. Food prep would be at an absolute minimum with dinner being something from the freezer and simply reheated. I wouldn’t go out for a walk. I would rest more and take it as easy as possible. I’d have a bath before bed to relax my muscles. I would go to bed even earlier than I do usually. Depending on what the outing was, this reduced routine would be the case for the the day before, day of and at least one day after.

My specialist and his team of therapists devised my daily routine. It is not a random timetable. Different types (physical or mental) and levels (high energy, medium, low energy etc) of activities are spread throughout the day to not over tire me either physically or mentally. This structure is based on my stamina, energy and pacing levels as well as my main crash points in the day.

Where rest is concerned the idea is that rest is used primarily to prevent crashes rather than to soak up the after effects of doing too much; though of course it plays a role there too. And rest has to be proper rest. TV watching is not rest and neither is surprisingly is sleep. Proper rest is real neurological rest where you slow the thoughts in your mind through meditation – yes really! Don’t laugh or knock it until you’ve tried it. Before I got sick with ME/CFS I was anything but your meditating yogi. As a corporate lawyer I thought meditation was only for ‘hippies’. How wrong was I! Meditation is now recognized as part of modern medicine and a crucial tool in calming your mind and thus calming your autonomic nervous system which is vital for real restorative rest so necessary to those of us with ME / CFS.

Enough about rest for now. I’ll do a full post on that some time very soon.

Back to my daily routine. Although it is my daily schedule and I follow it closely, it is not set in stone. It has room to flex and flow as and when my symptoms demand it. It allows for paced time increases in the ‘activity slots’. It allows for good days (more higher energy activities) and it allows for bad days (fewer high and medium high energy activities and more medium and low energy activities).

I have some modicum of control over my ME/CFS thanks to this routine. With its daily structure and the all important rests positioned at the times I need, I can prevent crashes and flare ups more than I can without this routine. As with everything with ME/CFS the routine isn’t a cure, it is merely symptom management but I can safely say that without it I would be in a much worse state.

As I seem to have waffled for longer than I intended, I think I’ll leave setting out my routine for my next post. Can you handle the suspense?!! Hope so 🙂