Tuesday 13 November 2012

A totally unrelated post


Living with an invisible illness should be something I am well used to by now. I have had at least three of them in my life time. Each just as debilitating as the last. But realistically I don't think it is something I will ever get used to and hopefully something that I don't have to.
Mid September I was diagnosed with having "Fibromyalgia" however it looks like it is something I was battling against for around a year without a clue.
I finished my 10th big theatre dance show in June 2012. It had been one of the most difficult shows I had ever taken part in. I was plagued with back ache, jarring knee pain and exhaustion. I simply put all these things down to being unfit and slightly over weight. Midway through the shows I developed shin splits and was unable to walk backwards and forwards to my dressing room without help, "It's just the stairs" I told myself and battled through dance number after dance number for 5 days. Come the end of the show I was totally unable to walk and took a week off of dance class to heal but a week later I was back to lessons and finding even the simplest of movements agonising. After half an hour of nothing more than warm up exercises I disappeared out the back door and sat down to compose myself. A quick sip of water and I was back in to the studio and carried on my lesson. This incident repeated for 3 weeks until it was the school holidays. By this point I wasn't leaving my bed at all during the day. Exhaustion washed over me with the slightest of movements and even the simplest of tasks were becoming too much.
I had felt this feeling before, it was all too scarily familiar. Back in 2001 I was diagnosed as having M.E, Otherwise known as Chronic Fatigue Syndrome. I left school when I was 13 and was known as the girl who "Just gets really tired" (if only it was that simple)
Although the familiarity of the tiredness was ringing through my head I had never felt pain quite like this before. The pain seemed to be spreading. The arch of my foot would swell up, the side of my foot would often feel like a sprained ankle. My knees would crack with every movement and the pain would be so intense I felt sick. My hips stung like a knife being drive in to my side. My lower back pain would consistently drive me to tears and my arms would ache so badly I just hung them by my side as if they weren't even attached to my body.
After many tears, sleepless nights and doctors visits I was finally diagnosed with Fibromyalgia. As with M.E, Fibro is characterised by many many MANY different symptoms and no two people will ever have the same ones, but for me everything was suddenly falling in to place.
Those chronic stomach pains and the extreme sickness I was getting from suspected IBS was linked with Fibromyalgia.
The constant sniffing, runny nose and sinus related problems were Rhinitis caused by the Fibromyalgia.
The return of my panic attacks which have plagued me since I was 7 were also caused by the Fibro.

Sadly you can not have a blood test to see if you have Fibromyaliga. You can't simply pee in to a bottle to get your diagnosis and no amount of x-rays will show anything. It is a long, lonely, frustrating road of trial and error to get to the desired conclusion.

Fibromyalgia, M.E, and Depression are just three of the many invisible illnesses that cripple thousands of people every day. Just because someone looks perfectly healthy doesn't mean they aren't suffering on the inside.

25 comments:

  1. Well done for trying to raise awareness babe.


    I know a couple of people with these and they say that almost daily they have people say to them,
    "but you don't LOOK sick"


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    1. The words "You look fine" have literally haunted me for 11 years.

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  2. Really glad you wrote a post like this. More people really need to know about it and understand.

    Fee xxxx

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  3. I love that you put this post up! Like you I suffer with 2 very exhausting, time consuming illnesses and I hate the fact that I'm always looked upon as not being ill especially by say for instance co-workers. Its about time that people need to realise that you don't have to look sick to actually be sick.

    If you ever need a chat with someone who knows where you're coming from I always have an open ear and I hope you stay strong and just take each day as it comes and don't let anyone rush you or make you feel bad about who you are!

    xxx

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    1. Thanks Charli. There are so many people with an invisible illness and you don't even realise until they tell you. We must be amazing actors to hide all the sadness and pain.

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  4. This is a great post lovely xx If I hear the phrase but you don't look sick once more I will literally throttle someone - So many of us suffer from the three invisible illnesses you describe, I possibly have lupus as well which throws another one into the mix :( Everyday is a struggle to a lesser or greater degree - huge hugs to you my lovely and remember your not alone xxx

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    1. Thanks Lou.
      I really didn't know where I was going with this post. I feel like I could of written for days.

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  5. I hope now that you have a diagnosis they can do something to help you it sounds utterly miserable, poor you. x

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    1. I have started some new tablets for the pain so fingers crossed. Thanks for your support.

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  6. This is why I want to specialize in phsychiatry after I graduate from med school.It struck me how much suffering comes from invisible illnesses and how much ignorance there is about mental illnesses in general!I wish you the very best!

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    1. Thank you so much.
      Good luck at med school, thank you for helping make a difference.

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  7. Oww, what a fabulous post! I have ME as well and it's so difficult when well meaning people say, "well at least you don't look sick", if only I felt as good as I look some days! Hope you're keeping as well as you can! Love your blog BTW! xx

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  8. Well done for you in writing this post. I get this ALL the time. I have at what best my doctor can diagnose as "severe IBS" it makes me so angry how people react to it. Most people think its just tummy ache. Last year I missed 90% of uni because I couldn't travel in the morning for nausea, pain and unpleasant side affects. People also assume I'm just a fat lazy person when actually I've put on 3 stone since it started just over a year ago. Sad state of affairs and awareness must be raised!
    Sorry for the "rant" lol. Well done again :)
    Lots of love xxx

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    1. I have put on loads of weight too and the best my doctor can do is tell me to exercise more. Which is slightly difficult with the body of a 90 year old lol.

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  9. What a beautifully written piece Maxi, well done for raising awareness and sharing with us.xxxx

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  10. My mum also suffers with M.E. (and has had depression in the past) and she has constant battles at work with people who just don't understand why she can't work longer hours or has to take the occasional day off.

    Well done for speaking out and raising awareness of these invisible illnesses - if more people understand the damage they cause, it would help so many.

    xo

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    1. Employers really don't get it. I used to constantly get called slow when really I was just battling exhaustion and pain, I used to go home in tears. Eventually I lost my dream job because I was 'too slow' and was absolutely gutted.
      I got another job and started getting shouted at for being slow so I simply picked up my bag and walked out.

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  11. I know of a few people with fibromyalgia and they are constantly dealing with comments that they're hypochondriacs and stuff like that. It really annoys me that, just because an illness isn't visible, that means it doesn't exist. Such narrow minded nonsense really gets my goat.

    Thank you for writing this great post & helping gain awareness for these illnesses

    xo

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  12. 'I have put on loads of weight too and the best my doctor can do is tell me to exercise more. Which is slightly difficult with the body of a 90 year old lol.' Is the story of my life!!!! I'll be visiting this page tomorrow as I have more to say. Take care x

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  13. Thank you writing this.
    I am currently sitting in bed next to my hubby waiting for the next seizure to hit him. As with FM, Epilepsy is one of those invisible diseases that can't be easily diagnosed and isn't understood :-(

    I really hope the new meds help you xo

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  14. Just passed by your blog by chance, but this post was really touching. I can't imagine the pain you must've gone through. I read in the above comments that you're starting a new course of tablets - I hope they help you through this! Great awareness on invisible illnesses xx

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  15. oh babe :( my mum has a chronic pain syndrome and fibromyalgia, and a friend has ME so i can almost understand how you are feeling.... it must be so rubbish :( sending lots of hugs and feel better soon thoughts, and if you are well enough to pop round for a cocktail for my birthday please do it would be lovely to see you [if you want non alcoholic thats ok as my lil sis is pregnant hehe] xx

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  16. I've just found your blog and this was the first post I read. I can't imagine what it's like to live with something like this, especially when employers don't understand something they can't see. A family member suffered from an invisible illness and I know it really upsets her when people are constantly telling her that she looks fine so she can't be ill. I hope your new medication helps and I really hope more people learn about these kinds of illnesses. Perhaps there would be more support and less suspicion then. This is such a brave post, thank you for sharing and raising awareness. xx

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