The people behind the illness


ME and fibromyalgia doesn’t mean gradually getting more tired and in pain throughout the day or having occasional days but it means pushing through the exhaustion and pain several times a day. I have to find something in myself to push through and get out bed, to answer the phone, to get to lectures. It means constantly making compromises and never being a good girlfriend, sister or daughter because you always end up not calling someone on their birthday or missing the party, not getting someone a card, never replying to the text or phone call, missing the presentation. Constantly, constantly, constantly apologising and canceling. Having a chonic illness means you’ll never be a woman of your word but always unreliable. You’re always trying to make the decision between being the person who never accepts an invitation or being the person who never turns up. I am so lucky to have a partner who loves me despite the birthday cards and parties he never got. I’m lucky enough to have a sister who loves me despite never getting to be the one who takes the lift instead of the train. A best friend who continues to be just that despite all the unanswered texts, emails, letters, calls, despite my absence when she needs me and despite my never having visited her once, although she travels hours to visit me. I am lucky enough to have parents who will look after me like a toddler when what they really need is for me to be strong for them.

Thank you.

SIMPLE PLEASURES: everyday life


Our normal routine, our everyday life is the very simplest of pleasures that most of us miss. It’s an awful irony that we only realize how blessed we were every single day, when something awful that puts those things into jeopardy. It’s only when someone has an accident that results in paralysis that they realize how lucky they were to live without a disability. It’s only once you get ill that you realize that you took a good night’s sleep for granted. For me, I’ve come to realize how lucky I am that I only have fibromyalgia and CFS/ME. This hit me one day on a hospital visit, I was looking for the right ward when I read ‘teenage cancer’ on the sign and right there and then I thanked God that wasn’t where I was going that day.

I found out recently that a family friend has been diagnosed with pancreatic cancer. Although I am not close to this person or his wife, they are my parents friends, this has caused me a lot of grief because I can’t imagine how painful it would be to lose Paul. I think about all the things they’ve already done for the last time without knowing- the last holiday they went on, the last birthday. My parents are going through an awful time in nearly every area of their life but they have each other. I know that I would take any suffering if I could have Paul with me. These friends have lived a good, comfortable life but I know all of that will feel empty when she looses her husband.

This is something Gretchen Rubin tackles in The Happiness Project. It seems too morbid a topic to have in such a book, but realizing that bad news is only ever a phone call away makes you realize how lucky you are. None of us are exempt from the call telling us a loved one has been in an accident or that the test results are not good news. In a twisted way it is other people’s tragedies that make us thankful for what we have. Nothing can bring us security, we can work all our lives for a retirement fund that disappears in a few days in a global banking crisis or loose all our possessions in a house fire or natural disaster. We tend to think that because we worked for something then we deserve it, and we do, but just because you bought it, because you’re a good wife or husband, because your parents love you unconditionally does not mean it will be there forever. In reality we never really own anything, it can be taken in an incident is what I’m trying to say.

In my Church, we have a saying- everything is a gift. Don’t take anything for granted. We can’t live everyday as if it were our last, I’d have no money for starters and I would spend a lot of time on tearful conversations and making funeral plans. But, we can live a fulfilling, satisfying life. In the Bible it says to live life in all its fullness, sometimes that means doing not very fun stuff like being good with your finances so you have a roof over your head, but I’ve learnt not to see these things as a drag, I am so thankful that I have money to pay my gas bill, unlike many people right here in the UK. Instead of seeing things as a drag, I turn it on its head and I see the blessing, instead of missing the blessing. It may sound saintly but I’m happy than I’ve ever been. The other morning, I woke up really early in pain, instead of moaning at how unfair this is and how tired it made me, I thanked God that being in pain meant I finally got around to doing some stuff. I have a really short attention span and a bad memory so it takes me so long to get around to doing stuff so being stuck in the bathroom made me do some internet shopping I needed to get around to. Later on, I feel asleep with my head in Paul’s lap, usually he can’t sit down for more than a couple of minutes but because he didn’t want to wake me, he chilled out on the sofa watching TV, something he barely ever does.

So, thank God or the universe or just be happy that you are so very blessed today, no matter how little you have.

SPORT TIME: what the Olympics can do for even sport haters


It’s been a while since we’ve had a sport post but the riots over the last few days have made Britain re-evaluate its society and what kind of picture of London this shows the world. In this guest post Paul looks at what the Olympics can do not only for our economy and sportsmen but also what it means for us personally, not matter where you were born.

“I always turn to the sport pages first, which records people’s accomplishments. The front page has nothing but man’s failures” -unknown

It’s been a week of turbulence and tragedy. The country has been left in shock from the rioting that has spread over the last five days. But, I’m not going to talk about that. I want to talk about something positive. I want to talk about the Olympic Games that’ll be taking place in Britain this time next year.

The Olympics isn't just for sport fans

The games have been a long time coming now. The expectation has been rising for years, and rightly so. This is a once in a generation event where the whole world will gather in the UK to see some of the most extraordinary people attempt the most amazing human accomplishments of strength, speed, endurance and skill.

As you can tell, I am very excited. I’m a massive sports fan; however, I’m absolutely convinced that the Olympics can appeal to everyone. I urge everybody to watch the opening ceremony, to see the pride on the faces of athletes representing their countries, whether they’re American or Nigerian or Russian or French or Tongan. I also urge you to attempt and watch some of the actual competition. Maybe it’s just me but I can’t imagine anything more inspirational than watching people from all walks of life push themselves to their very limits for an extra inch or for one less second. Whether you are athletic or not this is something you can’t help but admire.

The greatest thing about the games, however, is what it stands for. It isn’t just about people throwing sticks and running very fast. To me the Olympics is about peace, co-operation and equality. There are few things the whole world comes together for and the Olympics manages it every four years in the spirit of friendly competition. Competitors fight to beat each other, but when it’s all over you see them embrace each other as friends and are able to acknowledge the great performances by their competitors. It’s a spirit we should all come to respect and emulate.

Even after over a hundred years of the modern Olympic Games there is still so much that it can do to inspire the world.

It’s the little things: FAMILY


I just spent a happy afternoon with my family yesterday. We’ve all been going through a rough couple of years for a lot of different reasons, in fact things have gotten worse instead of better. My parents came to visit me and my sister, and our significant others. We went to a pub have a very British (and delicious) Sunday roast carvery. There was nothing especially luxury about our afternoon, we didn’t spend much money at all but we all had big smiles on our faces, we couldn’t stop chatting, and, most of all, we all felt happy. There’s never a better afternoon to be spent than among family, especially if they’re also your friends.

It was my mummy’s birthday this week so we were celebrating that a bit belated. The biggest present Paul and I gave to my mum was a family tree. I saw a similar project on a blog; I tweeked and changed what I needed to so it would be just right for my mum. My parents are notoriously hard to buy presents for, I wanted to give my mum something that would make her smile, something she might actually use. We decided to make her a family tree so that she can remember, every time she looks at it, that we are so lucky to have family (I’ve known a lot of people recently who have lost loved ones by sudden deaths, and divorces), and that these tough times have brought us closer together, and we will get through everything that life sends our way as a family, all of us together.

It’s a simple little thing, family, but your family are able to completely shatter your life or become your rock in tough times. It’s so easy to cut someone down when you know all the buttons to press. It’s sad to say but through my own experience, and my friends, I have found that rejection by a family member hurts so much more, and cuts so much deeper than any friend could do. This post may seem overly sentimental to some, but I couldn’t help but remark on the stark change in mood after yesterday. It really is the best thing in life. Having said all of this, I do also have some friends who feel like family, because they have been such a good friend to me, so loyal, so understanding, they have acted in ways I could have only expected from family. Hope this post reminds you too of friends and family you love dearly and always make you smile.

P.s. We also watched the Ireland vs. France rugby game together too, so expect some thoughts from Paul later this week.