Reality Bites

My first fortnight of trying to be a freelance writer has gone something like this:

Week One

Spend hours on laptop, reading about how to be a freelance writer. First stop, read lots of magazine articles to get an idea of what editors want. Find most of the articles boring or overly sensationalist. Get cross. Next, try to think of articles to write. Read the news. Find stuff which annoys me. Have a few half-baked ideas of articles I can write about stuff in the news which annoys me.

Write a GCSE-level article about passive smoking. Send it to the Guardian Health section when I should have sent it to Britons Against Passive Smoking (BAPS)* or some such unheard-of publication who are desperate for anything, not one of the biggest broadsheets.

*This publication does not exist. In case that needs pointing out.

Email a few magazine contacts about the blog. One wants me to send a sample post. I send the one which made one of my friends cry. Don’t hear anything back. Perhaps it made the editor cry too. In a bad way.

Pitch my ME piece I’m working on to Good Housekeeping. They very nicely tell me they don’t want it. At least they bother to reply.

Brain goes into overload. Everything I think about becomes a potential piece of writing but I feel too wired to actually write anything. Feel the pressure to come up with something soon as I need to get published and paid. Read freelancers’ stories about how they got started. Most of them go something like “…and after a year of writing for free I got my first paycheck for £200!” Despair.

Send an unashamedly desperate Facebook message to someone I dated a few times before I became a hermit, asking if he has any writing contacts. He does but not in the relevant areas. His advice: you can’t service a mortgage on writing. He’s right.

Week Two

Decide to go back to work next month. Writing seems to be a heck of a lot of work for peanuts. I do enjoy it though. Maybe it’s the masochist in me. I just can’t afford to be a masochist right now.

Potter about. Wonder if I can do a surgery lying down.

Coming next: My return to work plan and whether I manage to stick to it.





Creativity and ME – from hobby to job

Due to being too unwell to fulfil my work commitments as a GP, I haven’t worked since the beginning of this month. I saw a nice Occupational Health doctor who agreed with me that I wasn’t well enough for general practice.

“So you’re self-employed?….What does your husband do?”

“I haven’t got a husband.”

“Ah…” A pause. “So you need some kind of income then. Have you thought of anything else you could do?”

“I’ve thought about…writing.”

A career in freelance writing, for someone with ME/CFS, and no experience of writing professionally? Am I nuts? Maybe. But these writers must have started somewhere. I just need to be organised, draw up a structured routine to my day with planned rest breaks and be very disciplined.

Simple as that, eh? The problem is, since I decided to give this writing thing a shot, my head won’t switch off. My neural circuits are buzzing with tenuous ideas for articles, magazines I might be able to pitch these ideas to, freelance job alerts I can sign up to. These flickers of positivity are interspersed with doubt-bombs of “My articles will be terrible”, “I have no clue what I’m doing”, “Editors will laugh at my pitches and block my email address” and “I will run out of money having got not a single word published and my house will be repossessed”.

For someone who is a tiny bit obsessive like me, pacing your thoughts is difficult. I often fall into the creative trap of thinking myself into inertia. Result: zero productivity, mental exhaustion and a flare of ME/CFS symptoms a couple of days later. I had to write this blog post to break the trance of sitting on the edge of my bed rocking and staring at the wall. My lovely friend, Leila, has given me some excellent advice on getting started in freelance writing. Now I just need to calm down and act on it.

I’m sure the mindfulness meditation will help settle my busy thoughts. I’ve made the mistake of not doing it for the last couple of days, as I thought I was in too much of a bad mood to be mindful. I think that attitude is missing the point a little. We live and learn.

So I need to take my foot off the pedal, stop compulsively Googling things like “How to be a good freelance writer and earn enough money to pay the mortgage” and start to pace my creativity. Then I should start to see results.

Either than, or I’ll have to find myself a rich husband.


It’s all ME, ME, ME

Can chronic illness make you selfish?

Those of us who are taking steps to manage an energy-limiting, chronic illness will know that this involves both making difficult changes in our lives and accepting that this is a necessity. When these changes can include taking a break from or giving up a career, downsizing property, foregoing a social life, giving up certain hobbies, having to make do with a lower income, considerable feelings of resentment can arise.

My strongest feelings of resentment spring from my dependence on my mother for so much help. I am certainly not the only adult who has been forced to live with parents. The usual scenario is of a graduate who cannot afford to get on the property ladder so moves back into the parental home. My initial reason for living with my mother as an adult was my status as a full-time working single parent. Now it is because I rely on my mother to do the shopping, housework, cooking, washing as well as educating my daughter at home. I know I am extremely lucky to have someone close to me whom I trust to do these things . I am very grateful. Nevertheless, I find myself feeling angry that I am not functioning as a “proper adult” and, nonsensically, this anger with myself is sometimes directed at my mother.

It can manifest as stroppiness, sarcastic retorts, snapping, retreating to my room to be on my own – in short, the kind of behaviour you would expect from a sullen teenager. I am not proud of this. My irritability was at a height a few years ago when I was suffering from depression – it is one of the symptoms. Thankfully, that irritability has gone since I have recovered from that particular disorder. I thought that I had returned to being the nice, reasonable person that I considered myself to be.

However, a few days ago when I was doing one of my regular mindfulness exercises, I had a damascene moment. The series of meditations had moved on to a new exercise. The question I was to ask myself in this exercise was, “Remember the last time you did something, said something or gave something pleasant for or to someone. How did they react? How did you feel?” I was asked to reflect on this feeling. Doing my best to remain focused on my breath and not let my thoughts run riot, I trawled through my mind looking for an appropriate example. I could not remember the last time I had done anything nice for anyone. Eventually, I recalled that last week I had held the car door open for a family friend and she had said, “Thanks.” That was it.

I could not remember the last  time I had done anything particularly nice for my family. The previous day I had played “Picking Up Pairs” with my daughter. Big whoop – I had played with my child. To quote Chris Rock, “you’re supposed to, you dumb motherf***er!” What did I want, a cookie?

I sat and reflected on this. Mindfulness tells you to avoid any judgemental thoughts but I could not help thinking that I’d been a horrible, selfish person for a long time and had not even realised. It seemed that other people were doing nice things for me all the time, yet I was not doing anything nice for them. Could I blame the illness? Not really. It was my response to being ill that was to blame.

Later that day, I did something that I hadn’t done in a long time. I gave my mum a hug. Spontaneously. She was almost moved to tears and told me how much it meant to her. I felt immensely glad that such a small gesture had comforted my mum, who has been beside herself with worry about me, but simultaneously sad that it was such a big deal to her. Her response highlighted how selfish and introspective I had allowed the illness to make me.

Now, I did a tiny thing and it made a big difference. If your illness places physical restrictions on you, which prevent you from doing things for others, you can at least tell someone that you appreciate them.

Of course, I am not saying that we ought to apologise for our illness or push ourselves to do things that we are not fit to do, out of guilt. All I mean is, it does not take much effort to show the important people in your life that you care about them, in what you might consider to be little ways. It will mean a great deal to them. And it starts by ending the anger with yourself.

If you have any thoughts on this post, your comments are most welcome. I will reply.



Fun by the spoonful

I blithely announced at the end of my last post that the next would be about creativity and fear and how to have fun when you are unwell. Then I had a think about this. Creativity and fear is an essay in itself, so I’m going to focus on fun today.

As I thought about how to have fun when one is chronically unwell, the question arose – what is fun? We each have our own ideas about what we consider to be fun. There is some contention about whether fun should involve being interactive, for example, playing a game, rather than being passively entertained, for example, watching a film. The general idea seems to be that having fun is doing, or being involved in something pleasurable.

Now, because I wasn’t quite sure if I’d got my definition of fun right, I typed “what is fun” into a well-known search engine.  Second down in the results was Brian Will’s blog post, which seeks to answer the question. I found it a good read. Take a look about half-way down the post, at his list of “anti-fun qualities”:

  • tedium
  • pain
  • frustration
  • pressure of consequence

Brian isn’t even talking about chronic illness but I let out a “Ha!” of recognition on reading this concise summary of my experience of living with ME/CFS. I suspect it will resonate with others too. Now, if this is “anti-fun”, I don’t think we even need to bother asking the question, “Why do we need to have fun?”

We do need to have fun, even if we are unwell. However, it may be necessary to find different sources of fun from those we used to enjoy pre-illness, especially for those who enjoyed particularly physically active pursuits. I can’t say that I ever did, which has probably made the adjustment easier for me than it has been for more sporty individuals. Nevertheless, I’ve had to give up various activities due to illness, including playing the violin, learning Tae Kwon-Do and the most difficult one to swallow, socialising with friends. If I had anything to add to the “anti-fun” list, it would be isolation.

So how do I get my fix of fun these days? Well, firstly, I wouldn’t say I’m having oodles of fun. It’s more a case of getting a small dose where I can. I’ve learned to find the fun in little things. I’m not ashamed to admit that my main regular source of fun is The Archers omnibus tweet-along (Sunday mornings on BBC Radio 4 and Twitter, #thearchers, be there or be…doing something else), although I’m more than aware that this isn’t for everyone! I rely on social media in a way that I never did pre-illness, chatting with friends online as I find it easier than holding the phone for long periods. I make funny doodles with my daughter and we make each other laugh. Today we had fun making fortune-tellers (remember those? The folded paper things you used to make at primary school, which said things like “you smell” or, if you were lucky, “you are going to marry Luke Goss” inside?) Ours had forfeits in. I had to have a lie-down after pretending to be a baboon. See, even fun has to be paced.

Let me know how you manage to have fun and how your version of fun has changed since you became unwell. Comments are very welcome and I will reply.

Coming next, can being chronically ill make you selfish? No, it’s not all ha-ha-hee-hee on Spooncast, you know.



Seeing red

As part of my attempts to cope better with living with ME/CFS, I practice mindfulness meditation. I use Headspace, which is a course of guided meditations. I seem to remember it was recommended by someone on Twitter. I don’t get anything for recommending them, in case you’re wondering, and there are many other mindfulness resources available. This is a good website for introducing mindfulness and finding courses near you. This University of California website also introduces the topic and outlines Jon Kabat-Zin’s work.

Anyway, I’ve come to a challenging part of the Headspace programme which is designed to help people accept change in their lives. As part of the meditation, the question is asked, “How would you feel if you knew that today was definitely your very last day?” Yes, cheerful stuff. I asked myself the question and got quite upset. Now, as it is, I’m not someone who deals well with the concept of death . When I asked myself this question, I felt really angry. A string of expletives shot through my head and my eyes pricked with tears as I thought of all the things that I want to do but have not yet done as I have felt too unwell. I’m not talking about climbing Kilimanjaro or swimming with dolphins but things that really matter to me, like being able to do fun, active things with my daughter, like having a successful relationship, like making the most of my talents. So if today was my very last day, to be quite honest, I would feel angry, cheated, extremely sad and as though I had generally failed.

Are you ok? Are you feeling utterly miserable? Or are you just annoyed with me because I’m moaning and feeling sorry for myself? Well, I’m getting to the good bit. Having a chronic condition forces one to make changes in order to adapt. This is frustrating, difficult, stressful, all those negative things but it allows us to discover what we are capable of, to discover new things that we may never have otherwise considered. My illness has been the impetus for starting to blog and for sharing my drawings online. Previously, I would have been too afraid of producing something of poor quality and inviting criticism to even bother at all. Now, my priority is looking after myself as best I can so that I can get well. Consequently, the fear of failure, rejection and criticism has dwindled as the reaction of others has become much less important than the satisfaction I get from creating something. I’m not going to lie – it’s still there, but it matters so much less.

I’d really welcome your thoughts so feel free to comment or to tweet or email me. The next post will talk more about creativity, fear and how to have fun when you are ill.


Pacing in practice

I’m the first to admit that I’m not a pacing expert. Over the years, I’ve ignored signals from my body that I need to slow down, until I’ve crashed and then been forced to rest. Then I’ve got better and doubted that I have ME/CFS at all, got back on the treadmill and started the cycle all over again.

Having trawled through some of the extensive online material on ME/CFS and reading about people’s experiences with the illness, it would seem that pacing, knowing your limitations and breaking the boom-bust cycle are key to improvement. Now that’s all very well but putting this into practice is easier said than done. Becoming aware of your ‘energy envelope’, that is, how long you can spend on particular activities without having an exacerbation of symptoms, is important. But what if staying within your energy envelope is going to mean changing or quitting your job, downsizing your property or handing over the responsibility of parenting and housekeeping to others? The good old ME/ CFS self-help advice, ‘minimise the amount of stress in your life’ seems like a bad joke.

So how can we allow ourselves to pace with all this going on? I don’t have all the answers but here are some starting points. If you have anything to add, let me know:

  • Be honest with yourself about whether you can work and, if so, how much you can do. If you have an employer, talk to them and negotiate your hours. You may need to get a note from your GP stating the number of hours you can work. Ask to be referred to your Occupational Health department if your work has one. If you don’t work, do make sure you are getting the benefits you are entitled to. This may also involve getting supporting paperwork from your GP.
  • Find a GP who believes in ME/CFS. They do exist. If you are not happy with the service from your GP, ask to see another one, or register at a different surgery if possible.
  • Accept help. It is difficult – I am 33 years old and my mum does my washing and cooking. I feel embarrassed because I feel I should be doing these things myself. But if you have people around who are willing to help you, let them. It will help you to get better.
  • Try mindfulness meditation. It helps you to become more aware of how your body is feeling, in an objective way, which you need to be able to do if you are going to pace successfully. It also helps the mind to slow down and think more clearly, keeping things in perspective.
  • Accept that you will be less well off. Live according to your means. Cut out unnecessary costs like expensive phone contracts, high-interest credit card bills etc. If you don’t have the energy to deal with this, get someone you trust to research it for you. lf you’ve having problems with debt, speak to the Citizen’s Advice Bureau.
  • Don’t skip meals. You need energy to get better. A ready-meal is better than nothing at all if you’re not well enough to cook. Obviously don’t eat stuff laden with salt, sugar and fat. Also, make sure you drink enough. Keep water by the bed. If you don’t drink enough fluid, this may exacerbate symptoms of postural hypotension (blood pressure dropping on standing), a common symptom in ME/CFS.
  • Remember to have a laugh. Even if it means watching You’ve Been Framed or cats who look like Hitler. Dealing with ME/CFS is a drag and can produce feelings of frustration, anger, worry and stress. But you are not just an ‘ME/ CFS patient’; you are a person, who has ME/CFS. It’s hard but try not to let it define you.

Pacing alert: My brain is tired so I am going to stop now. I’ll add some useful links at some stage. Your comments are welcome.

Stay Positive

I’ve spent a couple of days feeling generally sorry for myself. Anyone with ME/CFS or a similarly energy-sapping condition will probably recognise the feeling of frustration that your life is on hold, that attempts to do normal, everyday things, let alone things you enjoy, can result in an exacerbation of
symptoms. It is, in short, a huge bummer.

But then I remembered that I didn’t start this blog to wallow; I wanted to start a positive, helpful discussion about living with chronic illness. So here are some positive things I’ve experienced:

I found some other health professionals who have ME/CFS, one of whom, a fellow GP, has just set up a Facebook group for medics with the condition. It’s comforting to know that there are many others with the same condition and I’ve encountered many great people from various backgrounds on social media who have helpful things to say. I was especially relieved to find other doctors with ME/CFS as I was feeling really isolated in my field of work and felt my condition was something I had to hide from colleagues.

On another positive note, although I’m starting to get really fed up with resting, I can feel a little improvement because I’ve forced myself to rest. Patience and discipline really are key in managing ME/CFS. It’s all too tempting to try to return to ‘normal’ activity as soon as you start to feel better but I’ve learned from experience that this just leads to more setbacks. So I’m trying to view the rest as something positive and even pro-active that I’m doing towards my recovery, or at least remission.

A final positive for today is that I’m making tiny steps to being more assertive. I’m naturally not an assertive type so I have to make a real effort in this area. Nevertheless, I did tell a friend that I would have to end our phone call as I was getting tired. Usually, I would have ignored signals from my body that it was time to stop, because I miss my friends and want to talk for longer. But on the other hand, it felt good to take control and know that I was doing something to manage my illness better.

So I’ve managed to remind myself that I’m not going to be a hermit forever and I will have fun again. I just need to be sensible and patient. What do you do when you are feeling fed up with it all? It’s ok to be angry, it’s ok to be pissed off, but you don’t have to be angry and pissed off alone. Feel free to vent here, on Twitter, or in your own Facebook group. Or find a willing friend to moan at. Just remember to ask them nicely to go away when you’ve had enough.

Coming out

After struggling through three days at work this week, l couldn’t manage to haul my ass in again this morning, so I called in sick. I hate calling in sick. I always sound like I’m faking it and end up apologising profusely.

‘Er, hi, J___. I, er, I’m not going to make it in today… l’m really not well. It feels like the flu. I’m really sorry to let you down. l just, uh, don’t think I’m safe to make clinical decisions while I’m feeling like this.’

I’ve already had ‘the flu’ this winter so they must be wondering how, as a doctor, l believe that I’ve caught it again. But I’m not lying; l do feel like I’ve got the flu. I’ve just been too scared to tell colleagues that I’ve got ME/CFS.

Well, it can’t go on. I’m going to come out. We’ll see what happens.

Express yourself…

I make the same sort of new year’s resolutions every year – get more organised, try to get fit, start doing the things I enjoy again. It’s the last one that I care about most, although it needs the others to happen in order to make it possible. Being a (now only wannabe) creative type, I feel that something is missing when I’m not producing something of my own making just for fun. Unfortunately, when you have a chronic illness and all your energy goes on just doing the necessary things, hobbies come pretty far down the list of priorities. But we need more than just fulfilling the basics of everyday survival to make our lives whole. When I was a kid, I would take a sketchpad everywhere I went. I loved drawing and painting just for the sake of it. I hardly do it any more and when I do, the pain I get makes it quite difficult. I also used to love playing music but for a long time have been unable to hold my violin due to shoulder and back pain and muscle fatigue.

I hope that I will get well enough to enjoy my hobbies again. I aim to make a start this year on doing at least a few minutes a day or every few days of something I really enjoy. Get in touch and let me know if there’s anything you’ve been forced to give up through being ill. It would also be great to hear from those of you who have managed to get back into your hobbies again, or if there is something new that you’ve taken up since becoming unwell.

Festive but restive

Two days after helping Mum with a difficult Christmas tree installation (it fell over three times while we were trying to wedge it into the bucket) and a day after the effort of chopping up a few vegetables, I’m feeling rather weak and achey. Time for another emergency stop before return to work next Monday.

I hope your Christmases were as restful as possible and that the New Year brings better health. I’m hoping to get started on the podcast in early 2014 with Pete, a fantastic artist and fellow spoonie I’ve made friends with over Twitter (see, it has its uses). You can find him @petehindle

Will keep you posted. In the meantime, if anyone feels up to chatting for the podcast, get in touch here, or @sophabed or

Seasonal spoons to you all x

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