ME Awareness Day


Yesterday (May 12th) was ME awareness day. The regular readers among you will know that one of the conditions I suffer from is ME (also known as CFS), and I’m passionate about exposing what it is really like to live with that condition. On that note, one of my new projects while I’ve been going through a very bad patch of health lately (told you I end up with loads) has been to set up a new a blog about my life. It’s much more personal than this blog, because if it wasn’t  then I wouldn’t be telling the truth. It won’t consist of post after post of whining, I’m just writing about my life and in that (hopefully) it will become obvious to the reader, the way in which my chronic condition affects my life. I really hope you’ll check it out and read it as loyally as you do this blog. I’ve named it Chronically Katie, and there are currently three blog posts for you to have a gander at to get the flavour for the blog, as well as two pages explaining more about myself and why I decided to start the blog. Please feel free to share a link and help me get the word out and give some constructive feedback.

Happy Sunday!

Link- www.chronickatie.wordpress.com

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Wish you were here


In an earlier post I mentioned how I always take up lots of projects when I’m stuck in bed. As well as being surrounded by loads of books, papers, pens and my typewriter, I now have lots of postcards of Cardiff to add to the pile. What could be my new project? Well actually I’ve gotten involved with someone else’s project.

Like most people my age, I would love to travel, but at the moment I’d be lucky to make it to the cinema because of my health. And, of course, the hurdle to most people- cost. So when I read about the Postcrossing experiment, I was more than excited about it. As fast as my little achy hands could, I typed in the web address and signed up.

You must be wondering what sort of project could get me so keyed up (pardon the pun). Postcrossing members exchange postcards with each other. I would have been sold at that, I love postcards and handwritten letters. I always collect and send them wherever I go. More than that though, Postcrossing is international so members get postcards from all across the world. When you sign up, you are given the address of strangers to send postcards to, and in turn, strangers are given your address and send postcards to you.* My first postcard was from Malaysia. Members can also browse each others’ profiles and request direct swaps. I am feeling very popular because I have already had a few such requests.

As though it were made for me, Postcrossing combines so many of my favourite things. The founder, Paulo Magalhães, is bringing back the wonderful tradition of handwritten postcards. I can’t wait to learn about the lives of people all over the world. How can you have possibly finished this blog post without clicking onto the site to sign up?

As a special offer I will send a unique postcard about where I live for the first three people to request it.

Do you like sending postcards or are they redundant with texts, emails, Facebook, etc?

For more information on Postcrossing, visit the website www.postcrossing.com

*For those of you who would be concerned about posting your address on the internet (and you are right to be), your address is not published on your profile but only given to members who are selected to send postcards to you. Clearly it’s not full-proof but I feel ok about a few random people who lives hundreds of miles away being given my address and nothing else.

When the chips are down


In the last few weeks I have gone through a really bad patch with my illnesses. Whenever this happens, I try to keep my spirits high by forming habits like writing down three things everyday that I am thankful for, or a list of activities I can do when I get bored. At the moment I’m trying to think of easy one-day projects I could do.I love little projects, especially creative ones, but I often get bored before I complete them so I’m trying to stick to attempting do something which will only take one or two days, and not much energy. We all have little things we like to do when the chips are down, what are your favourite things to do when you’re sick? Any ideas for my one day projects?

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.

The next step on my journey


Although I didn’t expect to learn much through doing my fibro awareness posts, I have. It’s the first time I’ve ever been in contact and chatted to other sufferers and it’s been a bit of an eye opener. It’s made to realise and come to terms with the fact that part of the reason I always feel so rushed, panicked and like nothing is getting done properly is because I’m trying to live a life which would be very busy without any illnesses, let alone someone with CFS and fibromyalgia. It’s not giving up to admit that and neither is tailoring my life so I’m not stuck in a cycle of depravation- always over-doing it, paying the costs and then being frustrated because I can never sustain a schedule.

Things have got to change. Part of that was actually writing down my “ideal” schedule- exactly what I would want to achieve everyday or every week- it was ridiculous so I’ve put some stuff on the backburner for now instead of trying to do everything at once. In honesty, that wasn’t enough, even after I cut out as much as possible, it was still obvious that I would still be doing too much. I had to make some tough decisions in reducing my work load in EVERY area of my life, including this blog. I have never been able to post as much as I always planned to on this blog and by rushing posts, I have sometimes compromised quality (if I’m honest)- re-reading some of my earlier posts made that obvious to me. I am, therefore, cutting back the features on this blog to what I think are the best parts and you may be seeing a few less posts on here but I promise to make them really good. I really hope my readership doesn’t go down as a result of these choices, I love each and every comment and subscription. It is a great moment in every bloggers life when someone signs up to be notified when a new post is published. It’s even greater to look back over the first year of blogging and realise how much more successful your blog is than you’d hoped and how it has grown.

Part of being a good blogger/writer is knowing what works and what doesn’t so I won’t be posting any more film reviews or sports time posts regularly, I will, however, be leaving the pages up so you can access old posts and I won’t completely close the door on the possibility of the occasional post in these areas.

And, I will be adding a new feature- inspiration of the month. Every month I will be choosing a person who inspires me and I’ll write a post on them and why they inspire me. If you know someone inspirational who deserves to be honoured then please contact me on the email address below- I am open to all submissions.

As you read in an earlier post, I launched my own small business this summer (eek!) called Pandora’s Box. In brief, Pandora’s Box grew out of the home-made posts on this blog. More and more I’ve realised my passion for vintage/retro items and remaking old things into new is something I want to share. Vintage shops and markets can be really expensive and so can handmade products so part of what I do is making sure all my products are really affordable, meaning that my products are cheap but I don’t make a huge profit but I’m ok with that for now. I love individual things but my flat is small and I can’t fit it all in so I’m happy to pass on vintage finds and home-made treats to happy customers. You can find out more about it and view items on the page here. I will post updates here on my blog for you to see and if there is anything which you love in a home-made post but for whatever reason don’t make yourself, you can request me to make it for you in the comments section on the post or on the Pandora’s Box page.

Related to this, as part of the Etsy community, I come across other great and very talented sellers- look out for posts for my favourite Etsy finds.

Most of all, I’d really like to take on guest posts, I welcome any and every proposal so whatever you feel you might want to put on screen and have published here, you can get in touch with me by email: kate.bennett@live.com

Thank you loyal readers,

Katie x

Fibromyalgia awareness week


When I posted a link to my ME story I had no idea the huge amount of messages of support I would receive through various forms of social networking. This has really encouraged me to share a bit of my personal health issues and use this blog to raise awareness.For about the past year or so I have had to keep increasing my dosage of painkillers (particularly after my DLA medical examination), for a long time my muscle pain seemed to get worse and worse. Last year it became blatantly obvious to myself and my doctor that my symptoms, particularly my pain levels,seemed incredibly extreme for a ME/CFS patient. My doctor knew that even though it was doubtful I would find a cure, I needed a proper diagnosis. Various hospital appointments and tests revealed what I had suspected and feared, I had also developed fibromyalgia in addition to my pelvic pain and ME/CFS. Last Sunday was the beginning of fibromyalgia awareness week and I wanted to use my blog to raise awareness about this little known illness. I really hope that you, my readers, will be as welcoming and willing to learn about this condition as you were when I published my ME story. I’m going to publish a few different posts telling not just my story but those of other sufferers and the inspirational way in which they manage to cope with their condition. I was hoping to have started these posts on Sunday but in true Fibro-style I haven’t been able to manage getting any up until today so the posts will probably continue a little past Saturday. Please help raise awareness by sharing this post on Twitter, Facebook, Linked in or on your blog.

Like ME/CFS, fibromyalgia is an invisible illness and there are few physical symptoms, it isn’t necessarily easy to spot a sufferer (or fighter as most like to call themselves). In this post, I want to share what exactly fibromyalgia is. I’ve adapted this information from various patient leaflets, websites, etc.

What is fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment. If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.

Note: It is important to notice the distinction between the levels of suffering of Fibromyalgia patients and to recognise the different ways in which a patient can both suffer and manage their illness. Some are able to manage with a slower pace of life, others like me are confined to wheelchairs or worse still bed-bound. Put simply-everyone is different.

What causes fibromyalgia?

The actual cause of fibromyalgia has not yet been found. Over the past several years, however, research has produced some insights into this puzzling condition. For instance, it has been known that most people with fibromyalgia are deprived of deep restorative sleep. Although I sleep really deeply, no alarm can wake me up, research shows that my body never goes into deep sleep but is disturbed.

Research has identified a deficiency in Serotonin in the central nervous system coupled with a threefold increase in the neurotransmiter substance P, found in spinal fluid and which transmits pain signals.

The effect is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness. It is hoped that more research will discover the cause and result in more effective treatment.

Current Treatment

At the present time treatment for fibromyalgia aims at reducing pain and improving sleep. In other words, some of the symptoms are being treated, rather than the condition itself.

Pharmacological management

Over-the-counter medications may help relieve the pain of fibromyalgia but severe pain may require the expertise of a pain clinic.

Medications most often prescribed for fibromyalgia are tricyclic drugs also used to treat depression although doses for fibromyalgia are much lower than for depression. In some cases these drugs will help both sleep and pain.

However, many people find available medications either insufficient to control their symptoms or difficult to tolerate due to a high incidence of adverse effects.

Support from family, friends and other people who have fibromyalgia is extremely valuable to those who have fibromyalgia. Professional counselling may help some people to cope with this illness and to take an active part in their own treatment. For more information on medications please visit www.fmauk.org/medications

Learning to manage the condition seems, so far, to be the most successful way of dealing with fibromyalgia.

A combination of heat, rest, exercise and reducing stress can enable some people with fibromyalgia to maintain a productive life.

Managing Fibromyalgia

The best way to cope with fibromyalgia is to use a number of techniques that ease the symptoms as much as possible.

Relaxation is one technique that works really well for almost everybody with fibromyalgia. It reduces tension in the mind and body right away. The results are calming for all the symptoms, especially for the pain. Relaxation can be learned from books, tapes, videos or special courses.

Heat is important. A hot water bottle and hot baths or showers will help reduce pain and banish morning stiffness. Soaking hands and feet in hot water for a few minutes can ease their aching.

Although no particular diet has been shown to help fibromyalgia, a healthy, balanced diet is important to provide protein, vitamins and minerals. It is best to avoid or at least cut down on coffee, tea and alcohol. Some sufferers have a tendency to gain weight and this can be distressing in itself.

People with fibromyalgia can have good days and bad days. On a good day it is important to pace yourself; overdoing it may simply make matters worse. Rest is also important.

Other symptoms

Besides pain and fatigue, fibromyalgia symptoms often include:

  • unrefreshing sleep – waking up tired and stiff
  • headaches – ranging from ordinary types to migraine
  • irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
  • cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
  • clumsiness and dizziness
  • sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
  • allergies

If you’ve read this entire post, thank you so much! I know it’s pretty long and probably not very interesting but there is no easy way to describe fibromyalgia. Look out for more posts coming soon which will give you an insight into the lives of fibro-fighters including interviews with other sufferers and “the secret language” of auto-immune and neurological disorders including fibromyalgia, ME/CFS and lupus.