Advice I would have given me when I first got #MECFS. (#MECFSAwarenessDay)

There are about 250k people in the UK suffering from ME, MECFS, MECFSID, CFS.

The fact we don’t even have one name to call this condition (Myalgic encephalomyelitis / Chronic Fatigue Syndrome / Immune deficiency) says it all.

250k is two and a half times the number of people who have Multiple Sclerosis. I bet if you asked a hundred people if they’d heard of Multiple Sclerosis, most would have, and most would have some idea what it is. But nobody who isn’t directly affected by it / has a close relative with it seems to know what MECFS is, and sadly that includes most GPs (who think it is psychological, when it’s defined by the WHO as neurological); and the UK’s research community is likewise disposed to look into how we can make people think themselves better from this condition. Which is like telling someone with a broken leg to think themselves upright (it isn’t just stupid, it’s cruel).

This is a pretty good defintion.

It affects every system of the body: brain, digestion, hormones, muscles, connective tissue, heart, vascular system, immune response, balance, sight, hearing, temperature regulation. It’s generally very painful. It is variable and a few good hours will be paid for by a few bad hours – or a few bad weeks, depending on how severely you have the condition. Many are completely bed bound by this condition. I spend months each year housebound and too unwell to have visitors. Some people find it worse at certain times of the year (I can do nothing from August to March, but for a few weeks around May I feel almost normal). Some find some supplements helpful, but what helps one person probably won’t help you, because your body and theirs are subject to different stressors. Some get a bit of relief from changes to their diet (I’m less hellish since I went gluten free). There’s no cure. No golden bullet to make you feel better when it’s at its worst. Some people are cured. Most who’ve had it for 2 years or longer won’t be. Over time, most people will learn to live around it – tiny lives with little activity mean no relapses. These people report that they’re improved. What they mean is, they’ve found a level of activity low enough that it doesn’t trigger relapses.

This is how I live.

I love my tiny life. All the fake friends peeled away when I got sick, the people I have in my life now are incredible, solid, kind human beings. I don’t have enough energy to waste on people who aren’t. All the things I thought were important in life peeled away when I got sick, and now the things in my life are just the necessary and the wonderful. You do actually get used to pain, both suffering it and knowing when to manage it with painkillers (a painkiller will require your body to do some work metabolising it. Sometimes therefore taking a painkiller will knock you out for 15 hours because your body just doesn’t have that energy spare. You learn when this will happen and make your choices accordingly. Pain is usually preferable to being asleep, for me). I walk with a stick about half the time now. It’s not as big a deal as I thought it was, before. I’ve found my level. I potter to my allotment plot and do 5 minutes’ watering every few days during a good month. On a good day I can do 10 minutes’ actual work, and the sense of achievement I get from that is incredible. I take my wheelbarrow down with the tools because it’s easier trundling that than carrying tools. I often use my spade as a stick. It is astonishing what you can achieve with five minutes’ work, provided you come back and do the next five and the next … when you can.

I try to see friends maybe twice a month. On a good month. More is a mistake.

When you first get this you think you’ll get out of it somehow. You try all the supplements. You try all the snake oil. You deny how bad it is. You’re scared. You’re increasingly isolated, and that’s scary (but the peace of isolation is also what you need). You’re in pain. You’ll have all this to deal with AND you have to deal with your relatives’ reactions, which can be anything from trying to force you to buy 3000 supplements (don’t. They won’t cure you, they’re just for the benefit of your worried relative, and as gently as you can, you need to say this to them). Sometimes a relative won’t believe there’s anything wrong with you, and will act as if you’re “just lazy” or “just” (JUST!) depressed. Again, as gently as possible, explain this is balls. Gently, but firmly. Your GP will try to make you do Graded Exercise Therapy, or attend CBT sessions. GET has been shown to make most MECFS sufferers worse.

It is very, very hard to police your boundaries when you’re too weak to wash your own hair. You will be short tempered and hard to be around, because you haven’t the energy for discussion or disagreement.

Lots of people DO get better in the early stages. Stay calm. Wait it out.

Some don’t. At some point if you’re one of the ones who stay ill for longer than a couple of years, you will definitely have to deal with depression, because the realisation that your old life has got up and gone is devastating, and it’s not a realisation that arrives quickly, nor is it a realisation that you will get over in a day or two. It’s a grieving process like any other. It keeps coming at you. This is why your GP probably thinks MECFS is caused by depression or anxiety: almost everyone who has this condition badly will suffer from depression and anxiety at some stage. Hang in there. It will be with you for a while, but it wears off. Talk to kind people. Listen to them, too. Don’t wallow in sadness, but do let yourself feel it. Don’t be afraid of that feeling. Don’t be afraid of getting help from your doctor for depression. It’s ok. The depression will pass in the end.

And somehow over the first few years you learn to cope with this, and what emerges is that all of the above can be true and you can still have a great life. I’ve gone through that period of adjustment and come out the other side, and I haven’t ever been as happy about being me, as I am now.

The company (virtual, mostly) of other people with this and similar conditions is lovely. They get it. And talking to them teaches you you’re not a weirdo, you’re not malingering (you will believe you are for a long time, every time you have a good hour or a good day you’ll think “but there’s nothing wrong with me!” – and then the next day it all comes back). You will find strength in their company. You will enjoy your achievements more than you ever did, when they were easy. Your life will contain more wins than it did, when you did a thousand things a day without noticing any of them.

Hang in there. You are stronger than you know, more determined than you know, and cleverer at finding solutions than you know. Life is beautiful.

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About chiller

Rachel Coldbreath spent 20 years working internationally as a technical specialist on large data collections for law firms, before becoming disabled. She blogs on a variety of topics from the news and politics to gardening and how very annoying it is, being disabled. Habits include drilling holes about 1mm away from where they ought to be, and embarking with great enthusiasm on tasks for which she is neither physically nor intellectually equipped.
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6 Responses to Advice I would have given me when I first got #MECFS. (#MECFSAwarenessDay)

  1. Lebeautemps says:

    Bravo. (And I’m so glad you mentioned fear of malingering as well…)

    • chiller says:

      It’s a terrible one, isn’t it? It really gnaws into your self esteem, although I must admit I think I’ve finally realised that no, if I CAN do things I DO. But most of the time I can’t.

  2. Johnny B. says:

    Love this, darling. It’s exactly what so many need to hear, even if they’re not ready to hear it yet. <3

  3. sherrielowe says:

    Very well written and described. I can totally relate to everything you say, especially the August to March. Winter for me is a complete write off. Also the hair washing. I’ve had a short style so that I can do it in the morning and then sit in bed for another hour to get my energy back enough to get up. Unlike you though I can’t say I’m happy with my life. I don’t even know if I accept it, I just get on with it. Like you spring is my best time although not so much this year I’ve had a lot of pain. Lovely to hear of your achievements on your allotment. I can understand why you find that uplifting. Thank you for sharing :) x

  4. themislovcom says:

    I grinned at the snake oil because that’s (well almost, it’s a homoeopathic dilution) one of the things I’ve been on lately and my advice to “newcomers” would be, no matter what/how, get the bugs out ASAP

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