Chronic Illness Awareness

posted in: Migraine, Words | 4

Something just a little different for today’s post…

First off, I want to say thankyou so much and welcome to everyone who has come to visit me. Gelli Arts, the amazing company behind the Gelli Printing Plate, has kindly sent oh so many new friends to meet me over the last few days. It’s been fantastic to hear from you and to see your own amazing new creations.

Migraine start
The start of the last migraine chain, last Wednesday.

You may have noticed that posting around here gets pretty sporadic. I hardly get out into the garden anymore, and my photography has had to take a bit of a back seat as well. I have been diagnosed this year with Chronic Migraines, and I just wanted to share a bit about it here with you. I know that I didn’t know much about them, and there is a lot that many people don’t know.

Fact 1 – a migraine is not just a bad headache. Yes, my head does hurt, but the actual process is different. A migraine is now believed to involve your neurons inside your brain being overly sensitized to otherwise “normal” stimulus…. your trigger. My triggers are light and noise. We haven’t been able to identify any others. Some people react to perfume, red wine, caffeine or even certain food additives. A migraine attack makes me dizzy, weak, photophobic, with intense pain in my head and behind my eyes. If you make any loud noises around me, I will physically wince. I will wear my sunglasses everywhere because shopping centre lights trigger the most horrific attacks.

Fact 2 – you don’t have to have the full-blown aura and vomiting to have a migraine. Actually only about 25% of migraines have those symptoms. Which is why for a long time, I never dreamed that I had migraines. However, that being said, each migraine attack can be different and I have had nausea and flashing lights over my latest attack.

Fact 3 – there is no magic pill to make it go away. I haven’t been able to find a pain relief medication to make the pain stop during an attack, and I am currently on my 6th preventative medication. Each time we are hoping that this is the one, this will work. Every person, every case is different and it takes time to work through all the possible combinations and eliminate all the other options, including MS, Brain tumors and Aneurysms.

Fact 4 – migraines, like CF, Fibromyalgia, Arthritis, Depression, are “Invisible Illnesses”. Just because I’m still standing and pretending to smile, doesn’t mean that I’m not in constant pain. I just stopped telling people about the pain because no-one can make it go away. It’s really easy to forget about people with Invisible Illnesses, because there is no visible reminder about the torture their bodies are putting them through. I am also fighting a losing battle with my brain, because the pain makes me very foggy and I struggle to find words for everyday conversations.

Fact 5 – migraines are much more common in adult women than men, and are also genetically linked. I have strong reason to believe both my mother and grandmother suffered from them, although at the time, they put them down as “sinus” headaches, which is a common misdiagnosis. If you genuinely have a “sinus” headache, you will have an infection, with the corresponding fever. If you just have sinus pain, that’s not a sinus headache.

Fact 6 – migraine attacks last between 4 and 72 hours. I have had a full-blown migraine, on and off, since last Wednesday (9 days). I have had a few hours with low pain, where I have scurried out to do some shopping or hang some washing out, but within 4 or 5 hours, the attack has returned and I am being beaten into submission again. I assume it is a string of attacks and not just one super long one, however I have to admit to being fed up with it. That’s where the chronic migraine part comes from. I have not had a week without pain in months. I can barely remember a day without pain!

I was overjoyed that this morning I woke up and the pain was back down in the manageable range – the height of my luxury being having a shower, which is really hard to do when you have a full-blown migraine attack. Despite DH and the children’s best efforts, there is some housework to be done, some shopping that can’t be put off, and hopefully leaving the house won’t trigger the next attack.

One of the hardest things of all is accepting my new limitations. I am used to being able to do what I want, when I want. Having mountains of ideas, and the energy to carry them out. Having words, and conversations, and being able to make sense. Now I feel like I’m turning into a shadow of myself. Some former Cassie, who is just some lame joke compared to the old one, who looks a bit like her, but that’s about all.

I hate being told I can’t do anything. I terrified my Dad when I was 5, by climbing up the ladder to see what he was doing on the roof. At age 8 I climbed Ayers Rock (Uluru), without my parents. I got so sick of people asking where my family was that I adopted a nice American couple along the way, who we stayed in touch with for many years, but I just wouldn’t accept NO. And now, I haven’t got any choices. My body is the one saying no, and it’s quite violently at times. But I keep pushing those boundaries, every day that I can, because, I won’t accept them. Maybe today, possibly tomorrow. But not forever…..

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Meanwhile, please share your experiences with invisible or otherwise illnesses. We can be great support to each other if we try. Happy Crafting - Cassie.

4 Responses

  1. Merryl Chantrell

    I sympathise totally because I have been a chronic migraine sufferer in the past. They only improved as I got older and I have them sporadically now. I used to hate what a friend of mine termed ‘my bright days’ when even going out into the bright sunshine triggered a migraine. I discovered I am sensitive to chocolate over Easter about 30 years ago 🙁

  2. Merryl Chantrell

    You’re right about ‘invisible illnesses’. I suffer with Inflammatory Osteo-Arthritis which makes all the joints of my fingers swell especially the spaces between my knuckles until I cannot close my hands especially my right hand and yep I’m right-handed. I have had Crohn’s Disease since I was 25 which is chronic inflammation of the full thickness of the bowel wall or anywhere along the digestive tract causing bleeds into the stomach or bowel. This leads to major toileting problems especially when or should I say if you go anywhere. Anaemia goes hand in hand with Crohn’s.
    I had a permanent Ileostomy created when I was 40 because more than half my large bowel had become so ulcerated it was unable to work properly. The drainable pouch which fits over my stoma to collect waste is invisible to the outside world. I still have Crohn’s Disease which manifests itself now as Stomach Ulcers but these are not as debilitating. Don’t feel sorry for me though because on the outside I look like anyone else and I’m forever grateful to have my Ileostomy because without it I would not be here to watch my 6 grand-daughters grow up.

    • Cassandra

      Thanks for sharing Merryl – I’ve got some second hand experience with Ostomies, as my Dad had one for the last 30 years of his life – he was in a very similar situation to you with having his colon completely ulcerated. He had his operation when I was a baby/toddler, so it became just a normal part of our lives. Without it, I hate to think what I would have missed out on without that very special man.

      Sounds like you’ve had your share of battles to fight over the years, which I why I value your kind words of support! 🙂

      There is a lot we all have to be grateful for, 6 grand-daughters sounds like a lot of fun! I know it’s a bit crazy, but I’m really looking forward to being a Grandma one day.

  3. I feel for you-my husband is a migraine sufferer. Thankfully, he now only usually suffers one major attack every 12 months-but he has to be hospitalised when he has them.

    Dee XX

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