bonnieash:

This is great – LISTEN!

Originally posted on Mostly Cloudy With Some Bright Spells:

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Mostly Cloudy, With Some Bright Spells

BBC Radio Sussex host Danny Pike kindly invited me on his show. We talked about what it’s like to live with a chronic, ‘invisible’ illness/disability as well as more cheery stuff to do with my mad career as a journalist before I was struck down with AS. He even let me nip to the loo half way through the interview – what a nice bloke! You can listen to that here – it’s in three parts:

BBC Radio Sussex interview: part one

BBC Radio Sussex interview: part two

BBC Radio Sussex interview: part three

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A Poem by Spike Milligan

I came across this poem today and it really hit a nerve. I’m not saying I’ve got manic depression but this poem really resonated with me especially as I’m a bit poorly at the moment and wondering when I’m going to catch a break. I think a lot of people feel like this when faced with chronic pain, at least I hope they do, else I’m alone!

MANIC DEPRESSION BY SPIKE MILLIGAN

The pain is too much

A thousand grim winters

               grow in my head.

In my ears

              the sound of the

              coming dead

All seasons, all same

              all living

              all pain

No opiate to lock still

              my senses.

Only left, the body locked tenser.

Day 7 – Health Activist Choice!

Write about what you want today.

Today I would like a day with no pain and a full night’s sleep. I’ve not had a full  night’s sleep for almost 14 days now. By a full night’s sleep I mean go to sleep at X and not wake up again until the morning. I’ve been failing to do this over the last two weeks as I’ve woken up in pain every night. I dream about days that are free from pain and I’m sad to say it’s been a very long time since this has happened. Keeping positive though :)

Day 5 – Ekphrasis Post

Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image!

Bald Eagle [Explored]

Lake Tohopekaliga
03/24/2012

 

As soon as I saw this image I loved it. To me it represents freedom and independence. The gift of flight means this Bald Eagle can go wherever he wants whenever he wants. I can easily link this to my situation. Having Ankylosing Spondylitis limits your freedom and independence. I often feel tied down by it as from day one when I was diagnosed with AS, I was told it is now all about commitment. This is a disease I will have for life, inevitably it will get worse over time and I have to commit myself to a life filled with medicines, doctors appointments, physiotherapy and exercise. I can’t make lots of plans as I never know from one day to the next how I’m going to feel. That’s how AS inhibits my freedom. Often when I’m experiencing a flare up I have to go home to my parents to be cared for. This is because I can’t make breakfast/lunch/dinner for myself. Sometimes I need help getting out of bed just to start my day. This is how AS inhibits my independence. I don’t think most able-bodied people realise how much they take freedom and independence for granted. I used to do it too before the symptoms of AS showed themself. I will never take it for granted now.

 

EEEEEK.

It dawned on me today that it is 3 weeks until my 29th birthday. This worries me. I’ve never really been one to go all out on my birthday and now I’m creeping towards 30, even less so. Of course my friends want me to celebrate it but I have to admit, I don’t really feel like I have a lot to celebrate at the moment. I’ve dug out this photo of me on my 1st birthday, spent in Seaview on the Isle of Wight with my family.. don’t laugh. I was right a baldy !!!

Note how grumpy I look though. This is a general birthday look that has stayed with me throughout the years.

Last year, I had a wonderful birthday with close friends in Camden. I can tell you now, it was wonderful not only because all of my closest friends were present but also because I was blind drunk and at home in bed by 11.30pm. Rock n roll! To be fair, I remember that as being the first time I had been able to go out in ages because my back had been so bad in the months leading up to it. Standard.

You’ll see from these photos I was quite away with the fairies, and I am thankful for the photos, else I wouldn’t have known what went on! I blame the Jägermeister!

Anyway, back to my original ramblings. The reason I am so fearful of my birthday this year is simply because I feel like I have achieved nothing. A lot of people say to me, ‘Oh but you’re only going to be 29!’ but sometimes that is hard to compute when I feel like I have the body of a 90-year-old. Even my rheumatologist comments  on how I carry myself like an OAP!

And naturally it’s stirring up feelings of being on my own. I always imagined I’d be married with babies by the time I was 25. Ok, admittedly this is when I was 10 years old. And I don’t particularly want to get married (ever) or have babies (not sure) but the older I get, the more I worry that I won’t have the choice. I have been single for a couple of years now. I’ve spent the last 3 years working on myself, chasing a diagnosis for my back and sitting in waiting rooms. I can assure you I’ll never find ‘the one’ in a waiting room as I don’t really fancy men over the age of 75. Such a shame! But then I also have this feeling of how can someone else want me when I don’t really want myself at the moment? I know I need to kick this attitude in the butt and I hope once I start the Anti-TNF treatment, things will start to look up.

In the meantime, if you have any single friends, preferably tall, dark and handsome (with tattoos!) then send them my way. Just please don’t tell them I have Ankylosing Spondylitis!