M.E. myself and I

When I have visitors, they do not get an accurate representation of my life with M.E.

This is because:

a) I am ‘well enough’ to have a visitor. (The stimulus that comes with being in the presence of another human being, the following of a conversation, potential smells from perfume, etc – one has to be ‘well enough’ for all of that.)

b) I get excited! So I become more animated than is normal (or sensible!) at being in close contact with a real life human being!

c) Adrenaline kicks in and fools me into thinking I’m actually doing okay.

d) I have no desire to show the whole world and his aunt my reality face-to-face. I shouldn’t have to. Seeing shouldn’t have to be believing. Of course I share quite honestly and openly behind the safety of a screen. But I am under no obligation to do this in Real Life all of the time.

e) I want an escape; a chance to chat with my family or friends that doesn’t centre around my restrictions. So, often I will appear more chatty than normal. (This is partly because I’m really don’t want my visitor to get a chance to ask me how I am.)

f) When I am in bed, I feel incredibly vulnerable. I don’t want people coming to sit on the end of my bed. Whoever you are! So I mask the vulnerability will false bravado. I put on a performance and I cannot help it.

Any others that I’ve forgotten that you’d add?

It’s been pointed out to me several times that it’s not ideal that this happens. As a result of visitors seeing me “better than [they] imagined [I’d] be” those around me have a harder time convincing said visitors that I’m a lot sicker than I seem. I care less about how people might misinterpret things now, but I understand that for my husband and my parents it can be hard to constantly face the “Well she seemed okay when I saw her!” from those a little further removed. You saw me for exactly 5 minutes, but okay!

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Visitors aren’t really a thing at the moment. I’m still shielding and really not well enough for contact or conversation. Just something I’ve been thinking about over the years.

CW Graded Exercise Therapy

The 2011 relapse came as a result of trying to increase my activity levels through graded exercise. (And as a result of attending the CFS/ME group sessions themselves – weekly sessions from January-March 2011 that were two hours long, with a mindfulness meditation half way through and a 15 minute break. An absurd undertaking for how severely affected I was but I was obviously desperate and an A CFS/ME patient wanting to learn. Spoiler alert, what they teach you is mostly common sense.)

It wasn’t a specific GET programme, more advice from the clinic to gently build up my activity levels.

So I started to try to use the stairs (a few steps at a time) or walk the 2 metres to the front gate on the days that I could. I was never really able to increase things beyond that. I couldn’t do it every day. I was so ill at the time I don’t remember feeling anymore dreadful after each exercise. Not initially anyway.

It worked so ‘well’ between February – August 2011, that I was able to move back up to my bedroom and leave my temporary dining room bed. I’d only been ill since the previous September remember so it was still early days.

I was doing what they were claiming would see me recover to full health; an incredibly, incredibly gentle graded activity increase that suited my specific restitutions.

And it caused me to relapse*. Infact I was worse at the end of August 2011 than I was when I was diagnosed in the previous November.

I was sold false hope but luckily I’ve always had quite a good bullshit detector. I never did anymore than I felt was sensible to ask of my body. But even that was too much.

So yes I feel quite strongly and am incredibly vary of graded activity of any kind, be it bonafide Graded Exercise Therapy itself or otherwise.

CFS/ME clinics still tell members of our community that they simply need to increase their activity level to build up resistance. I don’t deny that there’s likely an element of that; that deconditioning may play a part.

But is it not obvious by now that if exercise and activity programmes worked then there would be no long-term M.E. sufferers…

What I hate most is that those who see GET as some saviour imply that those for whom GET didn’t work (or made them irreparably worse) were at fault in some way. Those people can go in the bin, along with those who still sell the Lightning Process (cough witchcraft) to desperate and vulnerable people as a cure for M.E.

Good advice from over the years that has stayed with me?

• Rest
• Do 50% of what I feel well enough to do
• Cognitive rest is vital
• Acceptance is important
• Rest some more
• Seriously, go rest!

*God help anyone who tries to tell me I clearly pushed my body too hard.

Me: “What if what they see doesn’t equate to what I’ve been telling them I’ve been experiencing?”

Also me: “Pfft. I know my truth. Anyone who thinks the version of Anna they see for the next half an hour is the normal and standard version is…”

Me: “But waaaaaaah. What if they suggest I could get a part-time office job again because I look fine.”

Also me: “Take it as a compliment when people say “Well you LOOK okay!” I have no desire to look as ill as I feel! And even my parents and husband won’t employ me so good luck getting that part-time office job!”

Me: “But I posted a photo of me standing on the garden again! I should go back and edit in a ‘Disclaimer’ because otherwise everyone will think…”

Also me: rolls eyes at self “Give. Me. A. Break!”

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Anyone else the same?

It’s a constant process. I care far less now than I once did but like most things, it comes and goes. On the days I’m not feeling so sure of myself, it can feel like people are implying I’m not as unwell as I claim to be when they state “You look okay though.” But in my experience, so few people over the past decade have said those words in a way that wasn’t meant as a compliment.

The way my M.E. so often presents itself is not invisible at all. My legs buckle a lot, my eyes seem to actually change colour, there are blotchy rashes on my skin, my hands curl in on themselves as there’s no energy/strength to stretch out my fingers, my speech slurs, my face looks grey/pasty, my breathing is laboured, my posture changes…

But there are times when it is invisible, particularly to the very few new people I might be introduced to.

It’s hardest when it comes to medical professionals and benefit assessments. But let’s not even go there!

Just two little babes super hyped to have found each other.

I never thought I’d get married. I was single when I became unwell, and the ex-boyfriend who was keen to win me back suddenly wasn’t so keen when I became ill. Dodged a bullet my friends!

You’ll likely know by now that I was single for the first four years of having M.E. That being mostly-housebound meant I was highly unlikely to meet anyone. Rarer still were people who weren’t put off by my unreliable and ill health. I needed a carer far more than I needed a boyfriend! And I was good and happy by myself.

A spur of the moment ‘experiment’ on an online dating site introduced me to the man who would ask me to marry him just two years later. It remains the best and bravest (and most out of character!) thing I’ve ever done.

I’m not the type to tell you to never give up hope. I can’t tell you how much I hated that. I could talk all day about that kind of “You never know what the future might hold” hashtag inspirational chatter. It makes me roll my eyes so hard that they hurt.

I know there a lot of you who doubt or wonder whether you will ever get married. I am sorry, particularly because society places so much emphasis on marriage being the ultimate goal of any adult. I vote for parties where you get to wear a white dress and have people congratulate you simply for being you! It’s kinda the same!

Marriage is awesome, but only if you’ve married the right person. (Nailed it!) I know people who thought more about the wedding day than the compatibility of themselves and their partner. In spite of my health, or perhaps because of it, each and every one of our days contains happiness.

Happy 3rd Wedding Anniversary Mr Tree Surgeon. Thanks for changing my life as much as I’ve changed yours. Go Team! 14/10/17

(I’m still looking into cloning Mr Tree Surgeon FYI. But you should all know he is absolutely dreadful at putting his clothes away. Nobody’s perfect I guess.)

It’s time to call a spade a spade. I’m experiencing a relapse. My first relapse since 2011.

There have been countless Flares and Crashes and Setbacks. Hours. Days. Weeks. Months.

But relapses, as I define them (and as my CFS/ME clinic defined them) are where there is a dramatic decline and a return to the most severe and restricted time that does not ease after several weeks. It’s a return to the most severe and restricted time that differs from a bad patch lasting a few weeks. I’m almost two months in with minimal change.

This is a relapse.

That bastard clinic (sorry Mum!) told me I’d only ever have one relapse, and for some reason I half believed them and clung on to that – I’d already had my relapse in 2011, perhaps the only way was up and to plateau…

Along with the physical and cognitive restrictions placed upon me, this is incredibly distressing. For my family to see this happening again, for my husband to witness it for more than a week or two, is very hard on them. My spirits remain mostly okay. But to be back in the depths of this when those were the very worst and hardest years of my life is not ideal.

So my new ‘buzz words’ are Acknowledge, Accept, Adapt.

Acknowledge that this is really happening. It’s not just a dodgy few weeks. It’s apparent that it’s the real deal. Admitting that helps me to stop kidding myself that perhaps, just perhaps, I’ll wake up back to ‘my normal’ tomorrow.

Accept that things aren’t going to be as easy or how I’d like them to be for awhile yet.

Adapt by asking for and accepting more help than usual. Dig out all the old survival tools (the bowl to brush my teeth in from bed, cut off a good 5 inches of my lovely hair to manage the weight of it better, eat out of bowls rather than off plates, remove as much external pressure and stress as possible, share the load of care between my husband and my parents…)

So here I start again, from the beginning. Only this time I have 10 years of experience under my belt. And depending on what day it is that’s either a huge comfort or no comfort whatsoever.