A note to the healthy.

On a good week, I can see someone – either at my house or somewhere nearby – once, maybe twice a week. Twice a week is pushing it.

Most weeks aren’t good weeks.

Check out my calendar sometime. I go out or see someone about twice a month. Quite often I go a month without seeing anyone at all. I just don’t get to see that many people, in the flesh. It’s how it is.

This is why social networking is so important to me. It’s why I keep up with people on Twitter or my blog, or via text. Unlike the telephone (which I usually don’t answer because I can’t), or being face to face, or responding to a long email, social networking formats are short, not time sensitive, and don’t require me to be alert and capable when someone else wants me to be. They allow me to respond WHEN I am alert and capable.

If I didn’t use social networking, I wouldn’t talk to anyone at all, most weeks.

It’s harder for me to see someone here, in my own home, because it means I have to have been feeling OK enough for the preceding days that the place isn’t a wreck and I’ve got washed hair etc. YOU might not think that matters. I do.

I don’t know until the day – sometimes until an hour before I’m due to see someone – whether I’m going to be ok. If it’s an arrangement where there are a few of us, and it isn’t at my house, that’s ideal, because I can drop out and the thing can carry on without me. Nobody’s day gets wrecked.

But if it’s one person coming to my house, the pressure to be ok is quite big, actually. On a good week, that’s fine.

But, get this: I’m signed off work. Have been for nearly four years now.

Most weeks aren’t good weeks.

Most weeks are very far from being good.

I focus on the positive, online. The things I’ve succeeded at today. The things I’ve enjoyed. The things I’ve seen that are beautiful. Because who the hell needs someone bleating on about their problems and limitations ad nauseam? I’m not doing that, fuck no. And yeah, I realise this makes it hard for people to judge how I’m doing. I won’t admit it when I am not doing ok, when I’m really lost and failing, I won’t tell you. I’m evasive. I’m inconveniently impossible to look after. I won’t ask for or accept help. I don’t want people seeing me be weak. I won’t have it. Fuck no.

This is who I am.

No, I don’t listen to voicemails. Try walking around with profound jetlag all the time, check out how well you function when it comes to anything more demanding than throwing lunch together or pulling some clothes on. Get back to me on that.

And really, if you’re going to be annoyed with me for being unable to do the things you’d like me to do, within the timescale you’d like me to do them in, maybe you’d be better off only making friends with people who are well.

I’m not.

This entry was posted in all about ME, this year and tagged , , . Bookmark the permalink.

16 Responses to A note to the healthy.

  1. elaine4queen says:

    “And really…”

    yep. that one hit home with me. one of the many people who disappeared from my life when i got ill was a previously longtime friend who i had often worked with – money jobs as well as creative projects. she blamed me for not making it to a dinner she apparently went out of her way to make for me, when i had said i probably wouldn’t come, and i don’t know how many times i have told people i don’t do evenings. anyway, i thought that i would rather apologize than lose her friendship. and yet, i just couldn’t. intractably hooked into my mind was the idea that even if i went to that trouble it would never be enough because she would only really want to be friends with me if i could CHANGE.

    thing about CHRONIC conditions? they don’t go away. you can change to accommodate them, you can have good days, but people will always have to work around your reality. i was sorry to lose friends, i was amazed at the people who hung around and accepted the new me, and i loved making new friends who never knew me any other way and wouldn’t badger me to be different. and i, too, am sooooo grateful that this all coincided with the rise and rise of social media.

    • chiller says:

      I appreciate that it’s very difficult, if you’ve always been healthy and able to make choices, to understand that other people may not be being annoying / awkward / selfish – they might just be unable to do what you’re asking them to do.

      I guess the bottom line is, I’ve been trying to be nice, and it doesn’t work. It works when you’ve got enough energy to waste. It doesn’t when you don’t. I’m a cranky, prickly fucker. I don’t have the energy to baby people along any more, so I’m just going to get on with being a cranky, prickly fucker, and the people who find me inconvenient can go and play somewhere else. 😉

      • elaine4queen says:


        i only even considered trying to make nice because we have friends in common and it hurts them, but on an everyday level? take me as you find me or there’s the door.

      • chiller says:

        It has taken nearly four years of being laid up with this to get me there. But I’m there. x

      • elaine4queen says:

        yeah, it takes time. but in this particular arena your weakness is your strength. once you honour your own boundaries it becomes easier to express them to other people.

        before i got ill i didn’t have much in the way of boundaries, but illness foisted them upon me, and then i had to learn how to respect them. it was a good thing. wish i had learned it some other way, though.

      • chiller says:

        Ditto this. Precisely.

        This is only partly about other people being unreasonable (although DEAR GOD, some people have been, recently). A lot of it is about the fact that I need to learn to say “no” and let people react to that in whatever way they deem fit.

      • elaine4queen says:

        it’s an interesting process, alright. and once you have a handle on it yourself then however someone else reacts or responds is on them.

  2. Marian says:

    when i had ME/CFS there was no social networking! I joined support email groups – got depressed and then did online dating instead. that was messy ;o)
    echo all the above – the surprises of who fell through the sieve and who stuck around and the need to be mostly a hermit, mostly, in order to manage day to day and eventually get well. the importance of nature, repose and not being told what to do by the well-meaning but basically ignorant, the relationship between weaknesses and strengths and how they relate – you’ve got to be strong/weak to get this and strong/weak to get better.
    thankyou ladies.

    • chiller says:

      This is a lovely comment – thank you for leaving it.

      The “sieve” experience you mention is one virtually everyone I know who has a fatigue condition goes through, and the people who stay and are kind are never the people you expect will be. These conditions are very tough to live with, but my goodness you learn things from them.

      • Marian says:

        thank you for thanking me ;o)
        yes, you learn a lot but those unwise people seem to be having so much more fun, don’t they? i remember someone telling me my illness was a gift. not appreciated at the time i’d have punched them if i’d had the energy. the adrenalin thing was the key for me.

      • chiller says:

        Do you mind if I ask what you did about the adrenaline thing? I know about it, but can’t seem to turn it off.

        I don’t compare my life to other people’s. I know other people have holidays and relationships and things, but that just seems to be something happening on some distant and probably fictional planet. x

      • Marian says:

        true – all comparisons are odious (think that was Oscar Wilde!). I don’t mind talking about what I did about the adrenaline thing because it’s my hypothesis that for a lot of people it is *THE* thing, but my understanding is stuck together of bits from all over the place combined with my own experience – I guess that’s my disclaimer! SO … I first worked out the adrenaline thing when I started giving + and – points to all my activities on a daily basis based on all that bank balance blah about managing your energy. basically almost everything in the whole of my day TOOK energy away – if my previous energy scale had been a ladder, the new one was a fine tooth comb – I remember trying to decide whether the one thing I would do in a day was watch a 20 minute episode of Pet Rescue or wash my hair, because that would be me done in either way. things that raised my adrenaline / stress levels took lots of points away quickly – this might include happy things like seeing friends, or having ideas, crazy stuff like that. the ONLY thing that accrued points for me was proper quality rest for the nervous system. i noticed this by doing relaxation tapes and especially yoga nidra. with trial and error (long trial and many errors) I noticed that I needed to do this EVERY day even when I didn’t feel bad or when I felt really bad in order to keep netting the benefit. i also had to make sure i didn’t rob my bank balance with energy sapping stuff – i stopped watching anything exciting or horrific on TV for instance, I disengaged from news, I lived as a hermit, I ate things that were easy to digest so that my body had all available resources freed up to do REPAIR. If I could do more than one session a day or stick in a 20 minute lie down (switch off) with the brain out of the way of the body (this is what yoga nidra is great for) I could net more points.
        One thing is for sure, whatever else the ME/CFS thing is the nervous system by the time you get ill is BROKEN.the system is oversensitised to all stimuli. while looking through my stuff I find notes I made in 2000 about rats subjected to prolonged stress. they have enlarged adrenals and their thymus and lymph nodes shrink. a prolonged state of alarm – for whatever reason – will overwork the adrenals. excess adrenalin slows down the repair of tissues and cells – relaxation supports the healing of cuts, wounds etc, tension retards the healing.
        in chinese medicine it’s FEAR prolonged fear that is the enemy of the kidneys (where the adrenals are situated) and GENTLENESS is the antidote – gentle things soothe the nervous system. also in TCM ( I’m not an expert) the amount of kidney energy you have is dictated at birth , broadly dependent on the quality of the relationship and sex your parents had when creating you (i know!). you can’t have more but you can protect it with qi gong – very very gentle qi gong (I think you need to learn it from a teacher not a DVD) – I have to stress that a little goes a long way, the thing with ME state that nobody who has not gone through it can conceive of is the change in the scale of sensitivity to EVERYTHING good stuff and bad – so that even the good stuff you need in teeny tiny doses.

        that’s long, sorry, but the tip of a really important iceberg – adrenals are part of the whole endocrine system, still poorly understood, but one lot of glands chucking out too many or not enough hormones can upset the whole applecart – if you start looking at what’s governed by this system you can account for a lot of ME symptoms and i think it’s a state of freeze – the other stress response other than fight or flight which is like a desert to be in with the adrenalin throttle jammed on. i’m not saying it’s mental causation – a virus is a stress as much as a bad boss.
        the other thing that it’s probably important for me to mention was that I also had cranial osteopathy (a long story) which revealed a problem with my spine in the area between the shoulder blades – the seat of the parasympathetic nervous system – that was stopping my nerve motorway from flowing freely. this was key for me to get sorted and totally unexpected i didn’t have back pain or problems but i had had headaches – found out afterwards about an osteopath called Raymond Perrin – if you google him, whose whole thing is treating people with ME, but anyone probably could! so long as they are GENTLE and only do a little bit at a time! I totally plateaued when I stopped having the osteopathy. that was me, my combo of factors – doesn’t follow it would work for anyone else!!
        This yoga nidra http://www.youtube.com/watch?v=yr3N-FtQzTk is similar to the one I used although this is only 15 minutes and the cassette I had was probably 40minutes.

      • chiller says:

        Thank you for such a full and helpful response – every word of this is also true for me, bar the fact that I haven’t specifically tried yoga nidra or osteopathy, though I do use yoga every day, and the constructive rest position / anything that undoes the psoas muscle is my friend. I will look into your recommendations.

        The reason I asked you about adrenaline is that I’ve recently become aware that this is the kingpin of the problem, myself. I did the online conference course with these guys (http://www.fatigueanswers.com/), and it’s fascinating stuff. The jury is still out on whether the techniques in it are lifechanging (I know someone whose life has been changed by it, though), but it’s changing something for sure. The theory behind that course is that the problem is all adrenal / HPA axis, and I have to say they identified it chapter and verse and identified the causes of the symptoms – even weird stuff, like prevarication/failing to make decisions (because an adrenalised system means you have a brain that avoids committing to courses of action which may have consequences you cannot metabolically afford: your brain is basically trying to save your life/health by provoking inaction).

        If you can afford it, it’s worth it.

        What you have written about avoiding stressful films/the news etc is so familiar. Sometimes I think the only thing I’m fit for any more is sitting in the garden, staring blankly at bees.

        Thank you again. x

      • Marian says:

        cool. i hope they are right because then I’d be right too – I like that ;o). Enjoy the bees say I, for me it was woodlice and birds. Nature time absolutely fundamental. x

  3. Marian says:

    blimey – i could have made my fortune, missed a trick there! – and he’s only down the road!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s