I get asked a lot about my blog name. Mostly people get what the F stands for and are interested in how i came up with the name or why i chose it. Fashion is my first love. When i think about it, it is all i know and all I’ve ever done really. So with that being said i would hope the F would be a self explanatory play on words. There are others though who get deep about it and I suppose on a subconscious level there was more to it.
I have gone backwards and forwards with this one for the longest time. This has been a huge part of me and for a long time it was me. No i’m not talking about fashion, but the other F in my life. I have struggled with this one. I speak a lot about transparency and it dawned on me – I don’t want to appear to be making out i have one kind of life when in reality i live another. Those that know me will know where this is going. It is no secret really, just something i never addressed on the blog. I touched on my health briefly in a post on mental health but barely scrapped the surface. It is easy to appear to be living a fabulous life online, But it’s not real. I have this platform where i express myself , where i can be me… the problem is that it is the old me. I use blogging as a distraction and a means to keep me going. I never wanted the two to meet.There are so many amazing blogs dedicated to illness including A Paler Shade Of Beauty . Whereas Avril blogs about her illness for good i felt it would do the opposite for me. In the almost 3 years that i’ve been posting here and for some time before, i tried to write this. I really tried. It is what i do when i need to get something off my chest or out of my mind. When it came to this topic though things were different. Never one to be stuck for words, no matter when i tried to tackle this subject it never happened. The words just wouldn’t come. The ones that did, cut into me like a knife.
After two years of tests, doctors appointments, hospitals, frustration, pain, tears and my life savings i was finally diagnosed with Fibromyalgia. March marked 7 years as a fully paid up member of the club. Time flies when you have a chronic pain disorder aye. There is no definitive test to diagnose Fibro nor is there a cure. This is a disease which is still relatively unknown and hard to explain at times. Not many people have heard of it when i try to explain so it puts me off even trying sometimes. I write this in hope to possibly help others as i know i take great comfort in reading other peoples stories. They make me feel less alone in this and that i’m not completely mad. I will try my best though to outline some of the vast and varied range of symptoms sufferers face with fibro. This is going to be a long one cause there is so much more to this pain disorder than just pain.
First off the obvious one is pain and lots of it. Widespread stabbing, twisting, shooting, aching pain throughout the whole body. Muscles that throb, weaken, spasm and fail you. We process pain differently so the lightest touch can feel like a tonne of bricks on you. The feel of your clothes on your skin causing agony. A general feeling of un-wellness daily regardless. The tiredness is constant and chronic. Quite often sufferers will “look well” because this an invisible illness for the most part. You can’t see the pain and sufferers are very good at putting on a brave face.
We either don’t sleep or need to sleep a lot. This is one of the worst parts of fibro. Insomnia heightens everything and just makes it worse. Its something i thought i had accepted and am so used to but falling or taking a funny turn in front of people, is still really embarrassing. I am confident i could take home gold in the public vomiting Olympics at this stage though. I can go weeks without leaving the house. My body temperature can not regulate itself, i’m constantly frozen to the core or a sweaty mess with no rhyme or reason. Struggling to walk, grey in the face, soaked with sweat , i’m sure from a far it looks like i am just over weight and unfit. I am both, that is true but as a reaction to my body basically attacking itself. Raw itchy rashy skin, dry irritated eyes , constant mouth ulcers and blisters. I have stomach issues and multiple chemical sensitivity when lights , sounds , smells etc all become too much to process together leaving me feeling pained , irritated and nauseous. I am swollen pretty much all the time , mainly around my joints. This only just about scratches the surface and not to mention the other conditions that come under this umbrella. My immune system is compromised so i am open to picking up pretty much everything. This in turn plays havoc on the body. Imagine having all of this daily… sometimes all at once. Sometimes not for days or weeks then bang. 60 + symptoms that make no sense together and can make it hard to know if they are connected. Feeling 90 while your 20’s pass you by was a hard thing for me to grasp. Having to make excuses for why you can’t do things and the constant anxiety about being able to function daily is a killer. I am very lucky with the support i have but it’s not always the case.
- a rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localized tenderness at specific points on the body.
I have spoken out about my struggle with my mental health previously here. I hinted at the reasoning as to why i was suffering and that disease had lead me to that. Anxiety and depression is rife with Fibromyalgia, as a symptom but also because of how it alters your life. Being in such pain daily, you are not going to be happy really are you. Isolation plays a huge part in this. Spending long periods of time at home in bed , having to cancel plans , give up work all lead to a real sense of loneliness. I mourned the loss of my former life and developed a lot of anger about this. Maybe it was me feeling sorry for myself thinking about all of the things i couldn’t do anymore and all of the things that have just been taken from me. In the blink of an eye disease changed my life. The uncertainty about my future, the career i had studied and worked so hard for all gone. I cared about nothing because what was there to care about but on the flip side i worried constantly. Not only had i a battle in my body but now in my mind. The lack of sleep is detrimental too. Feeling so pained and tired makes you irritable. It can be really hard to have hope and be positive but you have to or else what is the point.
” But You Don’t look sick ” ,” You’re just tired “” I’m wrecked today maybe i have that too “” I know someone who has that and she is grand. She works “
The thing is that no two sufferers will ever be the same. This can be confusing i know but also brings with it further frustration. From the outside it is easy to compare though. There are some things that really get me and i will be totally honest with this one. I have heard them all by now but i still roll my eyes. You will hear people say ” But You Don’t look sick “ , ” You’re just tired “ , ” lucky you I’d love to stay in bed all day “ or my personal favourite – ” My Auntie has that and she is grand she works “. Well i am only delighted for your Auntie. No really i am. If she or anyone else has a mild version that is tolerable or controlled with their medication i am really happy for them. As the scale goes i’m not at the lather end. Since my diagnosis my form of FM has been degenerative. I have trialed various medications , been barred from a hospital but most importantly got to know how to listen to my body. This is daily for me. The sun is my best friend and heat helps my pain. The type of un-humid heat is the best medication going. Unfortunately we in Ireland live on a bog and the damp weather plays absolute havoc on me. I’m like that not so smart girl from Mean Girls in that my knees can predict when it is going to rain. Besides the weather , hormones , that time of the month , stress , illness and pain make my body hate itself , to dumb it down.
With regard to work i don’t think i will ever be able to do a regular 9-5 again nor would i find a job who understood that. Having zero control over your day to day health and well being unfortunately makes it very hard to commit to anything. I am a danger to myself most days if i’m honest. Lack of sleep and the distraction of pain makes concentrating near to impossible. Put in most workplaces i could then in turn become a hazard to those around me too. For example the weakness and spasms in hands turns pouring tea into a game of Russian Roulette. The tiredness is not your average i’ve had a long day and i’m wrecked. It is chronic like the worst flu of your life that you just cannot get over. Every once of energy and strength sucked out of you.