Today marks the start of Migraine Awareness Week (MAW). Every year The Migraine Trust promotes Migraine Awareness Week (1-7 September 2013) to raise general awareness of migraine as a serious public health issue.
As you may know, I have suffered from migraine attacks for around 15 or so years with the latter two years as a chronic migraine sufferer. I occasionally blog about my migraine experiences in the hope it will help others. The Migraine Trust are campaigning to encourage understanding that migraine is ‘more than just a headache’.
I have found that my online migraine friends have offered a great deal of support, advice and understanding. In particular, Victoria of the Migraine Monologues is an advocate for migraine sufferers and I always learn something new from her posts.
So, whether you are a migraine sufferer or not, I urge you to take a look at the Migraine Monologues blog during MAW 2013 to learn something about the condition. Victoria will be posting each day throughout the week.
So far in 2013, I have lost 70 days to migraine. Knowing that others understand what I am going through is a great comfort.
You can find links to blogs and articles by using the hashtag #MigraineAW2013.
Apologies for those of you expecting a crafty post – just a quick update on my migraine month and a little about Parkinson’s today.
July treated me more kindly and I had slightly fewer migraines. What made me feel happier is that I didn’t have the mega 6 day long attack which usually visits once a month.
August is so far so good, although another increase in the dosage of my daily meds left me exhausted for about 2 weeks. It’s slowly wearing off now and I’m hoping the week long attacks stay away. We’ll see.
Despite this, I have felt pretty sorry for myself as the day to day is still a struggle.
For the Migraine Monologues Book Club this month, we decided to watch Love and Other Drugs, a film about a young woman with early on-set Parkinson’s disease. It has been very interesting to look at another neurological disorder.
Today I spent the afternoon with my Grandad and his local Parkinson’s group for an afternoon tea boat trip on the river. What suprised me at first, is how big the group was. Not all could attend and it shocked me to think this many people in his local area all suffered with the disease (although some people were partners and carers).
However, it also made me feel so grateful for my Grandad. He has a community, friends, people to offer support. My Nan sadly passed away earlier this year and used to accompany him on these trips and events. It was bittersweet for me to attend in her place.
But there was cake and she would have not wanted cake to be wasted 🙂
The people in the group were amazing. Mostly in the later year’s of their lives, but all positive and vibrant, despite their varying levels of condition. We talked about families, the village I grew up in (where some of them were from), medication – whether they can have a glass of wine or not and how they often forget when to take them.
What I noticed about each and every person, is they all cared about one another. Having such a magnificent support network kept them positive. They helped each other with tea, sandwiches and toilet trips and talked about their regular meetings and events with excitement. My Grandad is very fond of the movement to music classes having been a competition winning ballroom dancer in his earlier years.
It reminded me that I am SO grateful for my online support network of chronic migraine friends and made me wish that we could all meet for a boat trip of our very own.
I gave Grandad his belated birthday gift which he was delighted with and held up to the boat window when anyone waved from the river bank! His doctor had asked if he had thick bottomed whisky glasses so he wouldn’t spill it with his shakes!
I feel so lucky to have such wonderful family members who never fail to lift my spirits in difficult times, even when they are struggling too.
What a humbling day I’ve had.
For more information on Parkinson’s UK please visit their website and consider making a donation.
On Saturday I took the train to a small town in Suffolk to watch my sister do a charity sky dive for the Make A Wish Foundation which helps seriously ill children.
The only route I could take on the train was a lengthy, slow one through pretty towns and villages, so I took my crochet and craft magazines for the journey. Travelling usually triggers a migraine for me, so I spent the entire day on the edge, hoping I would feel OK (but that’s pretty much how I feel most days now!).
Emma wasn’t nervous AT ALL. Here we are before the jump.
There were plenty of people jumping whilst we were waiting for Emma’s turn, so we watched people land and applauded their bravery.
Emma’s cohort of jumpers consisted of her and about 12 blokes who were incredibly nervous and in awe of her calm composure.
She was followed by a stag dressed as Superman who only found out he was doing a sky dive about an hour beforehand!
My wonderful sister chose a neon suit so we could see her from the sky. Our necks hurt from looking up, but we managed to get some photos. My Mum said she had “lots of blank sky” though!
My niece and nephew were so excited! We cheered as she landed with her tandem sky diver and there were smiles all round. The men who had jumped looked relieved, whilst Emma was all smiles.
I feel so proud of Emma for raising almost £400 for the Make A Wish Foundation. Her sponsorship page is here should any of you feel you wish to support her!
I know I could never do anything as brave as this, so I had to share this with you today. I did end up with a migraine after I returned home, but couldn’t have missed such an awesome day and came home with this banner from my niece which made me well up.
I’ve been a bit quiet online this week due to the dreaded M.
In May, I mostly looked like this (although with less winter attire and a few more grey hairs!). It was nice and I felt some hope that new meds were working.
In June, I mostly looked like this. Unkempt with a droopy left eye and no make up. My migraine face.
Top right was this week (it’s been shocking) and bottom left was a 6 day epic, painful attack. During a migraine attack is usually the only time I will take a ‘selfie’.
Obviously, I didn’t look like the bottom right picture as I’m not a chalkboard. G had left me a message during one migraine attack where I couldn’t feel my face. I love him.
So it’s been up and down. I do find it cathartic to share my migraine experiences and to let people know that bloggers lives aren’t perfect. I was inspired by this post – What Does A Migraine Look Like? If you are a migraine sufferer please take a look at Victoria’s blog.
Sometimes it’s too much to put on a brave face. Sometimes it’s OK and I can function through a day of work in a haze, just doing enough to get by. Today I feel a bit silly for sharing myself looking my absolute worst, but part of me doesn’t care.
I hope you have all had a good month and you are happy, healthy and well.
Onwards and upwards eh! I’ll be back tomorrow with a cheerier post I promise. It includes pretty bracelets and news of a giveaway.
The last month has been utterly rubbish. Being a chronic migraine sufferer, I rarely have a day without intense pain or mental and physical exhaustion and as much as I enjoy the arrival of Spring, the sun is not welcome for my poor head. Each day is a massive struggle just to get up and out of bed and I wait to see if the horrid feeling will turn into an attack.
My migraines last from 3-6 days with the interim days filled with exhaustion. I usually have 2-3 days a month (if I am lucky) where I feel ‘normal’. Brave face comes into play a lot.
G has been marvellous, bringing me chocolate when I need it (some migraineurs find they crave it during an attack) and sending me to bed when I look like I need to rest. He even sits in the dark eating his meals with me, speaking in his quiet voice because I can’t bear the light or sound. On Wednesday I sat in my house with sunglasses on, not trying to be like a celeb of course, but trying to find some way to function without having to slap an eye mask on and lay down.
This week he sent me this video which made me giggle but also made me feel like Gizmo.
Right now I still trying to work full-time, run my Etsy store and keep up with the blog (thank goodness for scheduling), friends and family. In my office, I sit with the blinds shut and lights off attempting to get through a whole day at the computer. My employers are fantastic and have made many changes to my working environment, but I can’t help but feel a lengthy period away from work will help to break the cycle. Medication is frustrating as I have to try anything for a 3 month period to test it’s effectiveness.
I’m lucky to have a great group of fellow migraine sufferers online who offer me a great deal of support. Daisy in particular, has recently started a blog of her migraine experiences which echo mine in many ways. If you want to understand a little of what she and I go through each month, please take time to read it here.
The biggest thing I’ve learnt over the last year, is that every migraine sufferer is different, and what works for one person, may not work for you.
I haven’t written this post for sympathy, but to share with you all that despite what some bloggers portray, life isn’t perfect all the time! I wrote this post to share my experience and some resources that have helped me in my migraine journey. I have found great comfort in knowing there are other people who understand and experience the same things as me. The links are below for those of you who may suffer or wish to find out more.
Here’s to a healthy May. I’ll try not be miserable I promise!