Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people who suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.
Last week we heard from Tasha and how she lives her life with Colitis. This week I speak to Laura who’s story is the one that struck a cord with me more than any other because I completely understand her illness as it is so close to mine. Read on as she tells us what it is like living with Chronic crushing migraines
Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.
Hi my names Laura, I’m 28 from London. I’m a self confessed workaholic, if I’m not in the office at my 9-5 (I work in the Legal Sector) I’m working at home this is either on my blog or cooking, cleaning and spending time with my family. I live with my partner and we have joint custody of his two little boys.
What is your invisible illness?
I suffer with chronic crushing migraines. This is a daily condition. Like most invisible illnesses I have good and bad days.
Everyday I have a headache that’s never gone away. My condition affects almost all of my body.
I suffer with my eyes, they are constantly blurry, I can lose my sight for hours at a time. I often suffer with photophobia and you will often find me in a dark room still wearing sunglasses because any tiny amount of light hurts me.
I have hearing loss in one ear so will quite often say “pardon what did you say”. In a bad attack I run a high temperature and fever, I get a stiff neck and pain all in my body. I often vomit this will be a lot around 20-50 times. I also get confused and suffer with slurred speech.
On a day to day basis I suffer pins and needles in my feet, hands and face. Nose bleeds are quite common usually to do with the amount of pressure in my head.
When did you first notice your symptoms?
I first noticed that something wasn’t quite right back in 2010 when I suffered viral meningitis. I have had meningitis three times in my life and is the route cause of my condition. I first contracted bacterial meningitis at 16 followed by viral meningitis at 19 and more recently I contracted viral meningitis again at the age of 27.
In 2010, I kept having migraine attacks where I felt like my brain was going to explode. I couldn’t understand why as I never suffered before and all I did was worry that I had meningitis again despite being given the all clear.
The attacks became more and more frequent over a short period of 3 months where I was having a bad attack every other day.
I couldn’t cope with the pain so decided to see my GP who referred me to see a Neurologist at St Thomas’ and Guys.
What was it like getting diagnosed?
When I was first diagnosed it was two years later, but this time I was fed up and just wanted answers. I was told that it was Daily Chronic Crushing Migraines. I was told it is a life long condition and there is no cure for the time being.
I felt relieved that I actually had something in writing that confirmed I was sick. Mainly due to the fact no one believed me and I always got comments like “it’s only a headache take a paracetamol”. “Well you don’t look sick”.
These comments made me very angry until my Consultant told me a different way to look at it. He said people will never understand because it’s not happening to them and they can’t see it. He also told me that if anyone asks to compare my good days to a healthy person when they say they are having a migraine and my bad days as mimicking the pain of meningitis.
Ultimately now the chemical make up in my brain has changed and on my brain scans you can see the legions from the meningitis and the bad attacks.
How does it affect your day to day life?
No two days are the same for me. I have good days but more often than not I have bad days. I miss out on a hell of a lot not only in terms of work but my personal life too.
My work try to be sympathetic towards my condition but like most they do not understand and I get discriminated against for having an illness that I have zero control over.
In the mist of a bad attack I can’t do anything for myself it is completely disabling. It breaks my heart not being able to do everything I want with the. Children, missing out on days out with them or having to go home early from places because I’m too sick.
There are days where I can’t even get out of bed because the pain is too much.
I’m not the same person I was and it upsets me that I can’t live the life of a normal 27 year old. I hate watching the people I love look at me with worry and having to watch me suffer.
Unfortunately I’m off any medication because it wasn’t helping control my condition, there were some that made me violently sick, others that made me gain weight, and ones I couldn’t take due to allergies. So I have to suffer, I have Botox treatment every 12 weeks which does reduce the pain slightly and I have a nasal sumatriptan for the start of attack which makes me sleep for a few hours.
At my next appointment we will be discussing more invasive treatment.
Do people treat you differently because of your illness?
I get discriminated against by my employer because of my condition I don’t get any reasonable adjustments. I’m meant to have a break from my screen which was advised by occupational health. This isn’t allowed I have to be at my screen from the time I get in til the time I leave.
My friends now don’t ask me if I want to go anywhere because a majority of the time I leave early because I can’t cope.
Other than that most people don’t see me a sick person because they can’t see my illness they just think I’m lazy and/or boring.
What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?
My only advice is that you go and see your GP if your headache is out of character for you. Please do not leave it don’t suffer in silence like I did.
For those already suffering and have the same diagnosis as me I salute you. You are incredible and strong it’s not easy to carry the burden of an invisible illness. I guess it’s made me more aware that you don’t know everyone’s story. Someone I might think looks “normal” my have there own invisible demon.
Do you know of any good groups or organisations of support for people with your illness?
I get help and advise from the migraine trust, I have had contact with them about support and legal advice in regards to employment. Other than that I don’t feel like there are enough support groups in my area.
What are your goals for the future?
My goals are to raise a family of my own, I recently lost my baby at 10 weeks due to my condition. I’d love to be in the trials for the new migraine injection because I feel this could be the breakthrough that is needed. I’d love to support young children and young adults who have suffered with meningitis and suffer chronic migraines. I don’t want them to feel alone like I did.
If you would like to follow Laura she has a blog Working Mums Club
Thank you so much for sharing with us Laura, like I said in the beginning of the post, your story hit me the most as I too suffer from this and it is so hard to explain to people who really don’t understand. We look completely normal on the outside but the struggle we face is very real and the level of support is almost non-existant.
Thank you again for sharing