Category Archives: ME

The Fault in Our Stars

What it’s like to live with an illness

The Fault in Our Stars and misconceptions about people living with a chronic illness.While I was enjoying my time off last week, I decided to treat myself to some of the books and movies I haven’t had the time to read/watch. One book that I have had on my list for quite some time is The Fault in Our Stars by John Green. Apart from being an author of young adult fiction, John Green also has a YouTube channel with his brother Hank, and I love their videos. They’re both such intelligent and proud nerds. They also promote and raise awareness about a variety of causes from political situations in the world, to environmental issues and do so with humour and kindness. I happened to already have TFiOS, so I decided I would give it a go and I was not disappointed.

The story is told from the perspective of Hazel, a teenage cancer patient and begins when she is urged by her mother to attend a cancer support group. I have to admit that I am not a huge fan of young adult novels because…well…the stupid teenagers annoy me. There, I said it. I have been a teenager and I was never that idiotic, and even if my memory fails me, I know plenty of teenagers who are so much more than their literary counterparts. I found the characters in this book to be a complete breath of fresh air. They’re witty, intelligent, while still retaining the innocence and naivety of teenagers. The fact that they’re also dealing with cancer, adds complexity and depth. I fell in love with the characters, was totally drawn into their adventure and was heartbroken for them too.

After I read the book, I went to Goodreads to rate it and to browse through the comments and reviews. I’m never interested in why people feel the same way about a book as I do, I want to know why people feel differently about a book. I came across a very long rambling rant about how The Fault in Our Stars was the worst book the reviewer had ever read and she had a number of people who agreed with her. Just because a book is popular, it does not mean that everyone will like it. For example, I loathe and detest the extremely popular Fifty Shades of Crap Grey and Hamlet, Romeo and Katniss Everdeen are just some of the characters that annoy me. We won’t all connect with or even understand the characters in different stories, but what I found remarkable in this girl’s rant was that she accused the author of having no idea what teenagers with cancer would feel like and she didn’t think teenagers would be that witty or intelligent. This is what she had to say: “One thing I don’t buy is that teens with cancer suddenly become magically wise. They become terrified, confused, depressed and angry. They DON’T magically gain great insight in life and go around puking long monologues about the meaning of life.” The author, John Green, did actually work with cancer patients and their families as a chaplain, but even if I did not know that, I do know plenty of teenagers who have ME, and they do not spend their time terrified, confused, depressed and angry. My friend Peter has had ME since he was 14 years old, and he is one of the most well-read people I know because of all the time he had to read so many books, much like Hazel in TFiOS. Also, when you’re faced with a situation not only where you could die, but where you are dealing with a massive disruption to what people perceive as a normal life, you find meaning in your own life. I not only found that to be totally plausible, but know it to be so. I’ve been ill for over 13 years and I can assure you that I find meaning in so many things that other people just take for granted.

I find it ridiculous that we think so little of teenagers and this is what John Green had to say on his website: “Teenagers are plenty smart. I don’t sit around and worry whether teenagers are smart. I mean, most of the people currently reading ‘The Scarlet Letter’ and ‘The Great Gatsby’…are teenagers.” This was evident when I last met up with my cousin and her 15 year old son. He’s a teenager, and loves computer games and has a new trendy hairstyle, BUT just in those few hours I spent with him, he discussed the art in the National Gallery in a very thoughtful and intelligent manner and talked about The Tale of Two Cities which he was reading.

The Fault in Our Stars is a wonderful, touching story and I would recommend it as suitable for everyone. Check out some teens talking about the trailer for the movie and what they thought of the book below.

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Paying For Christmas

Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE)

When you mention paying for Christmas, most people will immediately think of the credit card bills that are soon to show up. However, for people suffering from ME, there is an entirely different payment due. When a person with ME partakes in any kind of activity, they suffer from something called Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE). Some people end up paying weeks later, as the exertion credits accumulate, but for me I usually pay the price 24-72hrs later. In that time frame, I just feel worse and worse, and find myself being able to do very little if anything.

PEM or PENE is probably one of the hardest things for non-ME sufferers to understand. You may have seen your ME sufferer friend or loved one look fine on Christmas day, but when you ask to pop around the next day, or invite them out for lunch the day after that, not only do they refuse, but you can’t even get them on the phone to speak to them.

This is because most ME sufferers spend each day performing a careful balancing act of not exceeding their physical limits and making sure they get adequate rest. Spending Christmas day with family members blows that balancing act out of the water. The exertion is not just the physical activity, although that in itself can have a huge effect, here’s a list of other factors that may have overloaded the ME sufferer:

  • Speaking: Maintaining a conversation or even multiple conversations can take a lot out of an ME sufferer, and it is one of the reasons I rarely, if ever, speak on the phone. It’s just not worth the effort it takes.
  • Thinking: Continuing on the conversation path, when you speak to someone, you also have to think of what you want to say, and this takes up energy. ME sufferers often experience cognitive problems, so our brains can get a little foggy when called upon to even do something as simple as talking.
  • Noise: I spent one Christmas with only four adults, one child and a dog and I was so overwhelmed by the noise. I just couldn’t relax and for most of the day I felt like all my muscles were clenched as if I was in a real state of stress. They were not particularly loud by normal standards, but I found the noise extremely jarring.

The video below is a vlog entry by documentingme in the midst of a post exertional period. As she explains, she did not go out or even do anything physically, but had a friend come and visit for a few hours with her dog while she rested on the sofa.

After a period of activity it is really important for the ME sufferer to get adequate rest. This means proper rest. Here’s what Dr Myhill says about proper rest: ”By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All these count as activities which have to be carefully rationed through the day.”

If you’re an ME sufferer who is paying for your Christmas activities, firstly I hope you had the best time, if you didn’t, don’t worry, just spend time resting now. I know it’s not always easy to do, especially if you have children or have family staying over. But take advantage of whatever time you can and REST! If you have a complete relapse it can take you weeks, months or even years to recover from that. I had my last big crash in 2011, when, after over-doing it at work, I then REALLY over did it with my sister’s wedding. I should have rested but I didn’t. Here, at the tail end of 2014, I have yet to get back to my pre-crash level of energy and health.

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Letting Life Get in the Way

Letting life get in the way when you have a chronic illness...

I’ve had to take a break this week from my pledge to post every day. I’m going to be alone for two weeks, so I’ve needed to prepare for that time, in case I’m not well enough to go out and buy food or run errands. I love writing and I spend much of my time working on my sites, but I’ve decided to use my meagre energy reserves on spending time with loved ones. I hardly get to see friends and family, and at this time of the year, as people have time off work, there are more opportunities to socialise.

So this weekend I’ve planned to meet my cousin and her teenage son. They’ve invited me to go to a gallery with them. I’m not so great with the walking about, but I am still looking forward to it. I may have to pull out my trusty walking stick. Then I have time to rest before Christmas Eve, when I will be joining my whole family for the day as that will be our Christmas. In the week after Christmas I hope to be well enough to visit extended family. Another cousin had a baby back in September and I’ve wanted to go and see her for a while now. My two dearest friends also want to meet me at some point, but I have yet to work that in.

I’ve hit my stride now with gluten free food at home, so I hope that eating out won’t present much of a challenge. My family are aware of my restrictions and my dad, who will be cooking, even called me to discuss what I could and could not eat. The problem will be with restaurants. The cousin I am seeing this weekend also has things that she can’t eat, so it’ll be interesting finding somewhere that suits both of us! But this is London, if we can’t find something here, then we won’t find it anywhere.

Anyway, I just wanted to let you know that I’m OK, and have not had a huge relapse, I’m just letting life get in the way for once! In case I don’t post again before Christmas – I hope you all have a great one, no matter what you end up doing. Please remember to rest when you can and don’t over-schedule! I will also practice what I preach…promise!

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Christmas Shopping Aftermath

Christmas Shopping Aftermath

This weekend I proved that even when we know something will be bad for us, we go ahead and do it anyway. Two weeks ago I wrote a series of posts about how to get through Christmas planning and buying. The advice in them was sound, except I didn’t practice what I had preached. On Saturday I ventured out to do some Christmas shopping. In my own defence, I needed some items that I really couldn’t order as the store I visited doesn’t have an online store, also the reason I chose to go on Saturday (a day I usually avoid the shops) is because it was the only day I could get someone to go with me to carry my shopping.

I was really lucky because I went out early and it wasn’t as busy as I was expecting it to be. But the post-exertional malaise has kicked in full force. Yesterday I was achy and fatigued, but as is usual, today I feel even worse. So as soon as I have this written and posted I’ll be heading back to bed.

The lesson of this story is that no matter how good your intentions are, this is the time of the year where you may be forced to do more than your body can handle. Try to get as much help as you can and leave yourself some time for rest and recuperation afterwards. I would be feeling much worse if I hadn’t had someone help me with my shopping trip and I rested all day yesterday and I plan to do the same for the rest of today.

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Is There Something Easier Than Writing?

Is there something easier than writing when feeling more ill than usual?

This is just going to be a quick and most likely short one today because my energy levels are really low. I woke up feeling like I had been hit by a truck. I should have had a bed day today, but I didn’t. Instead I started thinking that there has to be something easier that I can do on days like this than writing. After yesterday’s post I was thinking about ill people who can’t even get up the energy to read a post and that combined with my own fatigue and sick feeling and I thought “I know, I should vlog on days like this!”

Yeah, well you know what I discovered? Vlogging is even more time, energy and health consuming than writing a post. First you need an idea of what you want to talk about, and I found that I was too tired to even remember what I wanted to say, so I had to make a few notes to keep me on track when I was recording. Then you have to edit the bloody thing. So no, vlogging is not easier than writing. I think my videos will have to wait. I realise that on those days where I have to wonder if there is something easier than writing, I need to take the day off and just rest.

Before I go I just want to share a piece of music with you! It’s what I have playing while I write this – I often find that an uplifting or energetic song will give me a nudge when I’m really feeling too knackered to get the job done. This did it for me today! I found it while I was looking for some royalty free music for any future videos I decide to make. It sounds like something else, but I can’t figure out what. Any ideas? Ciao for now!

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Adventures with Nettie

How Imagination and Friendship Helps Chronic Illness

The joys of an imagination when you have chronic illness

My friend Nettie is struggling with her health at the moment so I don’t really hear from her as often as I used to. She’s the friend who sent me the Christmas card I mentioned the other day. Although her partner keeps me updated on how she is doing, I miss her a lot as she seems to have always been there these last few years. Nettie is also an ME sufferer and has been an amazing friend to me, even though we have never met or even spoken. Nettie and I began our friendship after I was so moved by something she wrote that I e-mailed her to express how her words had made me feel. That was almost 8 years ago and I’m very proud to say that we’ve been friends ever since.

Most of our chatting has been done over text and for a considerable length of time I was unable to make it out of bed for much of the day. But Nettie and I would go on amazing adventures together. We are both Harry Potter fans, and like me, she’d listen to the audio books on repeat. Stephen Fry has a very soothing voice. From there our imaginations would take off and we’d message each other asking if the other would like to meet up at the Leaky Cauldron for a butterbeer. Or we’d head over to Hogwarts to join the students for dinner. Whichever one of us had extended the invitation would go and pick up the other one. So we’d make our way on the back of Hagrid’s bike, or riding a dragon. Even if we had to go on our own broomsticks, a baby dragon perched on the back was a great way to stay warm.

Some people reading this might be thinking “These two are insane!”, and yes, maybe we are a little, but in the best possible way! In fact, this insanity is what helped to keep me sane. It’s very difficult to imagine the effects an extended period of immobility and illness can have on a person, especially when you’ve always been healthy. When your head hurts too much to read or to watch a movie, you don’t have the energy to sit up and go online, and you can’t sustain a conversation to be able to physically talk to another person, it can get very depressing. I was able to stave off the worst by exploring a rich imaginary world (thank you Ms Rowling) with my friend Nettie, the wonder witch.

We would also send each other music we liked, and on the rare occasions one of us managed to make it out of the house, we’d take the other with us via text. So today, when I’m thinking about Nettie, I’m remembering all the adventures we had together and I want her to know I’m still always ready to go for a butterbeer! I miss my witchy friend and I hope she’s feeling better soon.

Before you readers ask, no, Nettie is not a figment of my imagination. I could never have imagined someone as fabulously quirky and wonderful as her.

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Always the Wrong Side-Effects!

Always the Wrong Side-Effects!

Like most people with a chronic illness I take a load of medicines. I can’t believe that before ME I was one of those people that did not believe in taking pills. I’m cringing as I write this, but I even remember lecturing friends for taking over the counter meds for headaches! What a pompous, judgemental, ignorant fool I was. Now I have piles of medicines everywhere. I started off keeping them in a box, then in a bag, then in a bigger bag where I would just take out a week’s worth at a time and keep them by my bedside table. But then even a week’s amount didn’t fit there anymore. I know I’m not alone, because I see so many other people with ME talking about how they have a pharmacy in their homes and I can tell you that my local pharmacy has several different pharmacists and they all know me personally because of how often I am in there.

I have meds for everything from stopping the nerves in my arms and legs spasming uncontrollably to pain meds to blood pressure stabilisers. I need these to keep me functioning even at the level that I am. I regularly get positive thinker’s telling me I shouldn’t take the pills; karma’s a bitch, especially when you’ve been one. But sometimes I do wonder if they’re right if only for the side-effects each tablet has. For example I recently had to stop taking cholesterol meds because of the joint and muscle pain they caused. Then I have pain meds that cause insomnia. In fact it seems that all of these medicines exacerbate some symptom I’m taking another medicine for. It’s a real juggling act and I seem to spend an inordinate amount of time discussing the pros and cons of taking different meds with my doctor. After having been ill for so long and having taken so many medicines I now know better about different medicines and am better able to judge which ones to persevere with and which ones to find an alternative for.

But back to the side effects, I’m having a fat day today and I find myself thinking “if I have to suffer through side effects then why can’t they be more perk than punishment?” I see people that take meds and they lose so much weight; I never have! In fact it’s always been quite the opposite for me. I was recently lamenting this with a friend. She’s a skinny girl who lost even more weight and she wanted to be able to put on weight. Then there are those hormone surges that leave some people radiant and glowing, and others looking like the wolf man, and this was pointed out to me from someone who was losing her hair from her cancer treatment. I guess someone could read this and say “These are really shallow complaints – who cares as long as you get better?!” I won’t lie, it’s not something I think about every day or even every week, but I am a human being and I have days where I feel down about something totally inconsequential and shallow, and on some of those days I do ask, “If I have to have side effects, then why is it always the wrong ones?”

Before I sign out for the day, I just want to say that the absolute worst side effect I ever experienced was something I was taking for my ears and it gave me dry eyeballs and night terrors. Now, individually those sound bad, but consider waking up in the middle of the night, terrified, with your arms up in the air like you’re trying to fight something off, and you’re having problems opening your eyes! Not fun by any stretch of the imagination.

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My First Gluten Free Christmas

Gluten Free Christmas

I went gluten free back in October and you can read about my reasons for doing that in Coeliac Disease, ME and me. I have actually had gluten free Christmases in the past, but I don’t remember anything about them and this is probably because I was cooking and able to make the changes very easily. This year however, I may be spending Christmas where others will be cooking and there are certain problems that arise with that scenario.

Early on, when I first became ill, I experienced a lot of guilt associated with being a burden on others or not being there for others and this is something I’ve mostly dealt with and come to terms with. But then today I felt a twinge of that guilt again, and it really took me by surprise. I know what a huge job cooking a lavish meal for a group of people is, and I realise it is because I don’t want to be ‘that person’ who makes the cook’s job even more difficult. This is totally ridiculous, of course. I can’t help that I have to eat gluten free, and if people still invite me when they know about my dietary requirements, then obviously they’re more than prepared to cook for me. Also, I’m known for always ending up in the kitchen wherever I go, so I can also help rustle up some gluten free alternatives.

I’ve been thinking about the different components of Christmas dinner and my main problems will be with sauces and if they’ve coated things like the roast potatoes in flour. It’ll also be a good idea to take some brand new wooden spoons and maybe a cutting board along, to avoid contamination.

The worst case scenario will be if they tell me something is gluten free, but it isn’t. It sounds like a mean thing to do, but the motivation for such a lie is usually the opposite. They want to avoid any awkwardness about the fact that you can’t eat something everyone else is. Seriously though, if someone just told me to avoid certain dishes, I wouldn’t feel bad and appreciate being told so much. There are a few people who don’t believe you have a real allergy, intolerance or dietary need and will just serve you something you specifically can’t eat. That is just not cool and can actually be very dangerous with people ending up in hospital.

Do you have any tips or advice for people like me facing their first gluten free Christmas?

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Socialising at Christmas: Things to Consider When You Have ME

Socialising at Christmas: Things to Consider When You Have ME

As I mentioned in my first post in this series, one of the things that most people love about this time of the year is spending time with friends and families. But that’s not always easy to do when you have a chronic illness like ME. Two years ago I decided to spend Christmas day alone, and that was the first time ever I had been alone at Christmas. I really wanted to do it as I just didn’t think I could physically handle Christmas that year. I’m glad I made that decision, but even then, I felt lonely on the day because I felt like I should be with my loved ones. Last year I was with my parents for Christmas and honestly, it was so difficult.

For many people going home for the holidays is something they really look forward to, but when you’re ill it can be so trying. I’ll use last my Christmas trip home as an example. I may live in central London, but my building and my street are very quiet and I spend a lot of time alone. I don’t watch television, so it’s not a constant noise in the background and I don’t spend much of my time talking or listening to others talking. For the first few days I was at my parents’ house, I was just overwhelmed with the noise. My dad has the television on from morning until night, and then everyone is talking to me and I could feel myself phasing out and just not tracking what was being said because it was too much. Also they live in a very busy area, so I could hear the neighbours and their kids. I remember after a couple of days I was just collapsed on the sofa.

Then there are the family dynamics that can be trying. I honestly want to spend as much time with each family member as I can while I am there and they all want to do the same with me. But when some family members are not talking to others or don’t want to be around other people, it really puts me in a difficult position. Eating Christmas dinner separately in two different rooms just makes me feel so horrible and anxious and defeats the whole purpose of spending Christmas with the family. I think this year I may make it a condition that unless everyone can be civil to each other, I’m not going to bother going, but that’s if I decide to go.

On a less personal note, if you happen to be working, there can be the temptation to join in with office drinks and Christmas parties. I was working in 2010 and I did go to the Christmas party, but I left long before everyone else did. Even though I was relatively well at that time, I was very aware of the fact that I’d have to pay for my exertions. The same goes for drinking alcohol; alcohol can have such a horrible effect on ME sufferers, that most of us abstain, but it can be easy to indulge at this time of the year.

What are the problems you have experienced socialising at Christmas?

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Don’t Get Bamboozled by Gift Buying At Christmas

Don't Get Bamboozled by Gift Buying At Christmas

Gift buying at Christmas hasn’t been a real issue in my family for many years now. We’re all fortunate enough to be able to buy ourselves whatever we want throughout the year, so not only is buying gifts for one another a complete nightmare at Christmas, but an exercise in futility much of the time. What we decided to do was save that money we’d spend on gifts and just spend it all on food and drinks that we could all enjoy together. This idea works great when you’re all adults, but for kids it’s a different story. I’m not so sure they’d appreciate the real Italian panettone one aunt brought over, and especially not the aged single malt whiskey grandpa treated everyone to. So there will always be some gifts that need to be bought at Christmas.

For people that are chronically ill, this is also the time of the year where we’re able to show our appreciation for those that have supported us and our illness throughout the year, be they carers or friends and family members. Here is what I would suggest:

  • It can be easy to be overwhelmed with wanting to buy the perfect gift that reflects just how much the receiver means to you. This is especially true if you want to thank someone for the way they have cared and supported you through your illness. Don’t worry too much; they obviously understand how ill you are and will appreciate the very fact that you got them anything and you can also include a note with the gift with just a few words expressing your gratitude. This will elevate the value of any gift card or bottle of wine you buy them.
  • Don’t wait until the last minute to do your Christmas shopping! That’s good advice for everyone, but when health and energy are not something that can be relied upon, you probably won’t be able to rush out on Christmas Eve and pick up something last minute. Write out your gift giving plan well in advance and buy what you can early.
  • I don’t know about you, but I cannot handle crowds. Braving the shops at weekends let alone during the peak of Christmas shopping is just not something that I can even contemplate. This is where the internet is your friend! You can buy just about anything online and many places even offer free delivery and returns, so do your shopping from the comfort of your own home. I’ve had my nephew’s Christmas gift in the cupboard since October.
  • While some people are just hopeless when it comes to wrapping Christmas presents, the chronically ill can have real problems with the required dexterity and energy to get the job done. Take advantage of any offers to gift wrap items before they are sent out. If you don’t want to do this, because you’d like to inspect them first, skip the usual wrapping paper route, and just loosely wrap in coloured tissue paper and give in a festive gift bag or box.

Good luck with the gift buying – hopefully you’ll be more or less done by now and won’t have broken the bank or your body with the spending and effort!

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