Flash Says…

Being a flake: Living with a fluctuating condition

Posted on: 2012-07-19

I roughed out this article from bed over a week ago. It’s taken this long for me to have both the physical energy and mental stamina to type it up. Ironic, then, that I was writing about how hard it can be to manage a fluctuating condition…

When I was a teen, my best mate had chronic fatigue syndrome. We would often make plans to meet up, but often I would receive a phonecall just as I was putting my shoes on or getting ready to go out, saying “I’m really sorry, but I can’t”. I stuck with it – I trusted and believed my friend – but I didn’t really get it.

Now I’m in that position. I get it, alright. So let me explain how it is, why I can be unreliable and prefer to say that I will let you know how I am on the day. Or perhaps we made plans, had fun on one of my “good” days, and now you’re wondering if I’m really ill at all?

Weeks 1-2: I was ill, with exhaustion and a nausea that stopped me from eating. I thought “Ok, I’ll cancel plans, and when I’m over this bug I will reschedule everything”. No problem, after all everyone gets ill now and again.

Weeks 3-4: Shit, I’m still ill. I’m spending more time in bed than out of it. What’s going on?

Month 2: Think “I’m clearly still ill… I’ll see the doctor.” Of course, I can only get to see the doctor when I’m relatively well, so I can think coherently enough to make the appointment, and drive myself over there. My GP says we will “watch and wait”. So I agree, thinking “this is inconvenient, I won’t reschedule things yet, I don’t want to let anyone down.”

Then I had a good week. “Hooray! I am cured! Reschedule everything!”

A few days later the fatigue hit me again. Oh, shit.

Eventually you look back over your diary. In my case I had the horrible realisation that not only was I still ill, but that I was still getting worse. But I couldn’t just cancel life. So I arranged to see a few good friends again, with the caveat that if I was ill, I could take a raincheck on the day. However, some places – medical departments, hairdressers etc. – require advance booking. So I made plans, in the hope that they would work out. However, it was time to write to my GP, to let him know why I cancelled an appointment two weeks in a row – I couldn’t get out of bed. He needed to know how bad things really are for me, even if he couldn’t do anything about it other than repeat that we “watch and wait”, a phrase I have grown to hate.

You come to realise that you have no control over your life. And aside from the depression of not being in control of your health or your capacity to do things, you think “how can I take the power back?” Nobody seems able to help. It is now month 9 for me and there is no sign of my illness easing.

As someone who (also) has a long term disability (a painful joint condition affecting my mobility) I already knew about pacing: the principle of working within your limits, knowing that if you overdo it – whatever that may mean to you – that the next day will inevitably be a day of pain, exhaustion and enforced rest. Infuriatingly, I can’t get this theory to work in reverse…

So if I have a medical appointment, or even if I want to go out with friends, I know that I must keep the following day clear for recovery. But even if I rest for the day before an appointment, it is no guarantee that I will be alert and ready to go on the day itself! I don’t know whether I will be well enough to get myself across town to the hospital department, despite all good intentions. And last minute taxis are expensive!

That’s why I’m unreliable, a flake, or whatever you’d like to call me. I’m at the mercy of my health, but if I’m unwell it’s not because I’ve been irresponsible, overdoing it or pushing myself too far – it’s just bad luck. When I say “I’ll come if I can” or “I’ll confirm on the day” then you know that I want to see you and I’ll do everything I can to be there, but sometimes my will is not enough.

It’s not all doom and gloom. As long as you don’t want to meet me before 3 in the afternoon, or to travel far from home, then chances are good that I will make it. This week I’ve hosted a friend (who had a 90 minute commute to see me, bless her), visited a local art exhibition cum party, and been out for dinner with family. I’ve also spent a lot of time in bed, in pain, or both, but at least that’s not been the whole story and I’ve made some happy memories along the way.

Chronic fatigue is one of those conditions that people don’t seem to believe in, until it happens to them… I see friends and acquaintances thinking this, not liking to say it until I do, whereupon they look relieved and agree. But whatever the cause of my symptoms, the illness has certainly struck me down, and all I can do is work with it. Fighting will just wear me out, and achieve nothing.

Whatever their diagnosis, if you have a friend with a fluctuating condition, please give them patience and understanding in the knowledge that it is probably frustrating them far more than you can imagine. And your continued friendship and support is probably one of the things which is keeping their hope going. 

13 Responses to "Being a flake: Living with a fluctuating condition"

I’ve lived every word of that. I’m curious: did any of the friends who you had to cancel plans with come to visit you instead?

It varies, depending on their own capacity of course. So I am lucky in that two different friends, each living a 90 minute journey away, have come to see me at my home. So have my in-laws, who live a 2 hour drive away. I really do appreciate the effort they have gone to (when Flash can’t come to the mountain…) But I haven’t seen my natal family (4 hours away) since Christmas.

Other friends have their own challenges and health issues, so I’ve seen them less than I would like. I’m just starting to use video Skype, and hope that will keep me in touch with others.

What I really miss, however, is the random “Fred and I are just going for a beer in town, who wants to join us?” as I’m much less able to do that nowadays. I used to turn up to parties, barbecues, geek meets and random beer gatherings, and to meet friends passing through London. Now I have to plan in advance, I’m generally unable to travel more than a couple of miles from my house unaided, and I feel that I’m out of the loop generally. I might not even wake up in time to see the invites! This also means that because I don’t turn up to these random beerings, I don’t get to make new friends… only to rely on existing ones.

Many of my friends are very kind in coming over, and I have tapped into arts and community groups and events in my local area so that I have activities and friends locally, but I still get cabin fever!

Just wanted to say that I hear you. It’s quite annoying when people measure productivity by non-disabled bodies. I have accepted that I will never completed on same level as others, I don’t even have cfs. I don’t even know what it like. I hope social media can bring a smile sometimes. Its help me.

Thanks. Yes, being able to use twitter (to discuss everything from politics to trivialities) is wonderful for me. It does mean I feel less alone when I’m stuck in bed, even though the view never changes. I think I’d have gone spare in the days before the internet, reading the same books over and over, listening to the radio, watching people pass by in the street below without a care… but then I wonder what is yet to be discovered, and smile to myself as I think that in 20 years time maybe people will say “I don’t know how disabled people managed back then, stuck at home with only twitter and email for company!”

I too suffered from debilitating “fatigue” and severe joint pain for years. Finally a new doctor discovered the underlying cause – undiagnosed celiac disease. Anyone suffering from unexplained chronic fatigue along with arthritis-like problems should consider gluten as the problem. Check out the 300+ symtoms of celiac disease and gluten intolerance at celiac.com.

Thank you for that suggestion. I have had lots of suggestions and am working through them, but I have been advised not to change too much in one go, or you won’t know what has made a difference. I think that’s good advice. So far I’ve tried vitamin D supplements and Co-Enzyme Q10 and I don’t think either of them have helped, so it’s time to try something else.

Could celiac symptoms come on suddenly, because this started fairly suddenly, when I have been eating e.g. pasta all my life?

Also, there is a cause to my joint pain and IBS (I have Ehlers Danlos Syndrome type 3) so it is possible the fatigue stems from the EDS and not from another cause. It is very hard to rule things in or out, and a slow process. I see a gastro specialist and he has not suggested celiac disease.I also notice food triggers, for example I have noticed that raw onion causes symptoms the following day, and I’ve not noticed that with pasta etc. But thank you for the suggestion, I will keep it on my list of things to consider, one at a time.

I hope your comment helps someone else, whether or not it helps me. Thank you for reading and commenting.

Well said – I have cfs too and resting up – if you can switch off- does not mean you will be ok later/next day, just as you said, esp if u can’t sleep either. wouldn’t it be nice to know when you will be ok, at what time you will be able to cope with seeing someone – if at all that day. the not knowing makes things so awkward and you never know when things will change. and also things can make me worse for weeks or months not a day,and these r the simplest things
Sophie (27, wiltshire uk) @Sophiesworld1 on twitter found your article via @kimbellybull

Hi Sophie, yes if only you knew when you would be well. I wish I could do a deal with my condition: it could have me for half the time, Mondays, Wednesdays and Fridays, say, if I could be myself on other days. Oh, I wish…

Oh, your comment about resting up IF you can switch off really strikes a chord. People probably wonder why I am active on twitter at 1am, but can’t get up before 2pm. Go to bed earlier? Yes, of course I thought of that. Sometimes I do. But if I sleep earlier, then I often wake in pain at 4am. Getting to sleep when you’re in pain is hard, even if you are really tired! I’m often on twitter as a distraction while I wait for the meds to kick in…

Yeah people don’t know what were going thru and gets annoying. Like of course her right side is numb if she doesn’t walk around was said to my mum. I very rarely sleep thru the night.

Very well said. Thanks! Look forward to more from you.

I have the same condition as you though if we got together and compared notes I’m sure our experiences would be quite different. Having said that, I can be a flake too and sometimes I’m flakes precisely because I’ve pushed myself too hard. I might have done too much at yoga or arranged to see a friend after a doctor’s appointment. Or I might have run with a day or two of having more energy knowing there will be that inevitable crash. I do my best for me, my family, my friends and the rest of those who rely on me to turn up for things.

Like you I often appear much better than I am even when I have to cancel things. I’m also struggling mentally and emotionally with fainting when I’m out which has really knocked my confidence and makes me less inclined to venture out alone. The last thing I expect is to be judged for this by those close to me but over the last 18 months I have slowly slipped off peoples’ radars. It’s a shame because I think I’m a better, more compassionate person because of my illness so they are really missing out.

I know what you mean about slipping off people’s radars; on the plus side those friends who have stuck by me, and particularly those who make long journeys to my end of town because I couldn’t manage the trip to theirs, have really shown themselves to be decent people and enriched my life.

Twitter is good for keeping in touch with other spoonies, sharing sympathy and solidarity or just knowing there is someone else who can’t sleep for the pain, or can’t stop throwing up, to reach out to (and support each other, it’s not a one-way thing). Might that work for you?

I bet if we compared notes we would of course have some differences, but probably a lot of “oh gosh yes! I recognise that…” moments. Which is why I like to be in touch with other disabled people – not to surround myself with misery, as outsiders and some doctors may think, but because it helps so much to know there is someone else who understands, and won’t judge.

*hugs*

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