Raising awareness of migraine disease

by Judith Guilford in Chester, England, United Kingdom

Raising awareness of migraine disease

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Flexible funding – this project will receive all pledges made by 28th January 2021 at 10:21am

My aim is to raise awareness of the effects of migraine disease, pay off my debts, and kickstart my business raising awareness.

by Judith Guilford in Chester, England, United Kingdom

Every morning for the last twenty-two years my first thought every morning is "please don't let my head hurt". I slowly open my eyes, one at a time testing them against the light in the room, and gradually lift my head up off the pillow. On average, for five out of seven days I have a headache. My next thought is "Bollocks", trying to assess how bad it is, can I function? Can I stand up? Have I drunk enough? What did I eat last night? Am I going to be sick?

It's exhausting.

Although my friends and family know I suffer from migraine disease, they don't know the full extent. I have hidden so much of it from them so they don't feel sorry for me, but it has got to the point in my life I can't hide it anymore and I'm tired of being told that migraine isn't a chronic illness.

Having kept a migraine diary for my amazing consultant for the last 18 months I have finally seen how frequently they actually affect me. On average I have 25 migraine days a month...

Imagine only being able to do a full days work for only 5 or 6 days a month, but worry that staring at the computer or not sitting correctly would kick off the searing pain in my head.

The thing is, the pain isn't the only part of the migraine, there is so much that isn't talked about in general society.

List of migraine signs and hangovers:

  • slurred speech
  • confusing words
  • forgetting things
  • blurred vision
  • temporary blindness
  • being unable to process what you are seeing
  • anxiety attacks
  • depression
  • lack of concentration
  • nausea
  • vomiting
  • sensitivity to light
  • sensitivity to noise
  • sensitivity to smell
  • abdominal pain
  • diarrhoea
  • seeing flashing lights or zigzag patterns
  • hallucinations
  • watery eyes
  • itchy nose
  • hot ears
  • tooth pain
  • metallic taste - almost like blood
  • excessive yawning
  • swollen lymph nodes
  • excessive hunger
  • excessive urination
  • energy bursts followed for extreme fatigue
  • shaking
  • anger or mood swings
  • tingling scalp
  • pins and needles in hands and feet
  • eye pain
  • hearing loss
  • hair actually hurts
  • eyelashes actually hurt
  • vertigo
  • runny nose
  • hearing things that aren't there
  • stiff neck
  • painful, tight jaw
  • sweats
  • freezing
  • sneezing
  • euphoria
  • sore, itchy skin
  • vibrations in arm
  • feeling drunk
  • electric shocks
  • restless legs
  • numbness
  • lower back pain
  • Alice in Wonderland Syndrome

Individually they all seem pretty harmless don't they?

Put 3 or 4 of them together and it's a rough day. Put 10+ of them together and it's a living nightmare. Some of the prodrome (the but that comes before the headache) can last hours and even days in some cases. 

The resolution stage can last up to a week after the pain has subsided. 

My brain is constantly on overdrive with them. My senses are heightened at all times, I watch TV with the volume on 4 and have to open windows whenever I cook so the smell doesn't linger in the slightest. I have to be careful what perfume, if any, I wear. Same with shampoo and body products, anything that smells too strongly can kick start the pain. Walking past Lush is a huge no no for me. I can't stand lamps being on at eye level as it's like the sun is burning a hole in my retina, even when I'm not looking at them, car headlights have the same effect and I struggle to drive in the dark now.

When you suffer with chronic migraines you are more or less constantly in 2 stages of migraine and it really takes its toll on the body. Feeling wrung out daily no matter how much you sleep, and either in pain or suffering from the most random symptoms on the planet.

The most frustrating thing is that migraines are actually fairly common but most people only get 1 or 2 in their lifetime so it is not researched or even taught as much as other areas. In the 7 years a doctor spends training only 4 hours are given to migraine disease.

Chronic migraine has stopped me living a normal life, I was ridiculed growing up for getting confused, or forgetting things, I always laughed when it was pointed out at school and put it down to being a "dumb blonde". Anyone who knows me knows I'm not dumb at all but it was easier to go with that than tell everyone the truth. 

It seems ridiculous to e embarrassed by a medical condition and until recently I was. I didn't want pity or special treatment, all I have ever wanted is to live a "normal" life. 

Over the next few months I am going to go into detail about how migraines have affected me over the years and how I've ended up living with my parents at 35 and unable to hold a job down due to them. 

My aim for 2021 is to help raise awareness of the effects of migraine disease and raise money towards research with my blogs and merchandise sales.

Overall I want to raise enough awareness that the Government take the seriousness of chronic migraine and give us equal rights among other disabled people.

Let's make 'Raising awareness of migraine disease' happen

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