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Living with the Invisible F

It wasn’t easy – deciding to start this blog about the ups and downs of living with fibromyalgia, chronic illness and depression.

I feel very awkward talking about something so personal to me, but I want to believe ultimately it might be a good thing, not just for me but for other sufferers.

Fibromyalgia is a complicated illness. It carries a wide range of symptoms from extreme muscle and nerve pain, chronic exhaustion, dizziness, and chronic migraines, to insomnia, memory impairment, irritable bowel movement, cognitive difficulty and depression. It’s a lonnnnnggg list of symptoms and we get by on medication and with therapy.

No two sufferers are necessarily the same, but what we all have in common is we’re trying hard to live with an ‘invisible’ illness that impinges greatly on our everyday living. An illness that much of society doesn’t understand.  We’re constantly being judged.

Despite significant research that’s still ongoing, some people and doctors think it’s all in our heads. Some people think we’re all lazy just wanting to benefit from the state.

But we know how we suffer.

Everyday.

How we’re affected

Sometimes it’s hard to explain how debilitating fibromyalgia can be, without people thinking ‘yeah I feel like that all the time too.’

It’s not like that. But with help, I’ll try my best to explain.

We’re normal people like you trying to find ways of living an ordinary, happy life, but this ‘invisible illness’ makes that very, very difficult.

We don’t appear sick, but we are.

Most of us don’t work, not because we don’t want to, but because our bodies won’t permit.

We’re often in pain, sometimes stuck in bed, with the simplest of activities making us very exhausted.

Most of us do silly things (very often) like putting our cell phones in the fridge and the milk in the cupboards, not intentionally but because of fibro fog and cognitive difficulties.

Many of us are hypersensitive to pain, smell and sounds. Poke us meaning to tickle and it might hurt, some chemicals might send our systems crazy, and many of us can’t bear loud noises because they sound like they’re right next to our ears.

Sharing

It’s not easy living with fibromyalgia, and especially not when it is so misunderstood. But I’ve found that it helps to share with people. Not everyone is ignorant or uncaring like those who laugh at us or mock us. Some people want to know more and genuinely don’t know.

Some sufferers think they have to suffer alone. I was like that, until I started meeting other people who thought they were the only ones too.

That’s why I’ve started this blog. To share with all those who suffer with me, or who want to learn more about how fibromyalgia affects us day to day.

Feel free to contact me about any subjects you’d like me to talk about, or to share any experiences.

Gentle hugs 🙂

potofcallaloo
Alisha Nurse is a curry-loving writer & comms professional who holds a Master of Arts Degree in Journalism (International) from the University of Westminster, London. Get in touch with any feedback or questions via the contact form in the 'About' section.

15 thoughts on “Living with the Invisible F

  1. Wow Alisha, thanks for sharing what is obviously a personal side. It’s very enlightening and hopeful will change the way people view fibromyalgia. Perhaps in your next post you can tell ignoramuses like me what exactly fibromyalgia is? xxx

  2. well done in creating this blog hun,i am a fibromite too and everthing you have said is so very true.
    People do need to have more understanding of the condition,when im asked what fm is i find it exhausting telling them what we go through as we have too many symptoms etc with fm.

    looking forward to your next piece and thankyou

    from one fellow fibromite to another.

  3. Hello Alisha

    this is a great blog I have looked through and thought I would sign up for emails too…thanks for sharing this we us fellow FMS sufferers… xx 🙂

  4. I am very pleased you have put this blog on, like you say the invisible illness. I am looking forward to future posts, take care..hope your pain is quiet!! at the moment.

  5. I think the way you have described this illness is spot on…we are not asking to be treated special but want more awareness…this is a auto imune illness ..that is invisiable..but then so are a lot of other illness…a lot of the time people think we look well as many sufferers go that extra mile to appear well..maybe makeup ..doing thier hair more..maybe smiling trying to be posative…i personally think a lot of us are burnt out phyically or emotionally….or both..i remember thinking back to when i was a child and dropping things ..being called ‘scatty’ or in a dream world…and being told off at school because i was complaining getting worn out at school….does it ring a bell..??..anyway im one of the lucky ones at the moment…i went through years of pain..at mo im coping a bit better with good medication…a memory foam bed..8 hour sleep when pos…eating good ..not having much of a social life…pacing my self…taking medication etc etc….if i have to do all this to function i will…and if it means i can at least not complain too much around my family and hopefully be there for them..(and my gorgeous pupp) I will…pain is so so bad..like flu symptoms..and we have not got dementia…so please please ..just try to understand and not judge us…it can happen to anyone…and on a posative note…thanks alisha for your courage and time in doing this blog….lets all stick together in this world…love and gentle hugs michele xx

    1. Mich, I can relate to the childhood experience. I found it hard to process anything I learnt, and I was always called ‘spaced out’. Even as I got older I was teased at for looking like I was ‘always in a daze.’ I hope we can all get to the place you’re at where we can find ways of coping better with this illness. Lots of love:)

  6. Thanks friends, fellow fibromites for all your support and encouragement. It’s really overwhelming and I can’t wait to share more with you. Hope you’re all having a great day, pain free and smiling:) Gentle hugs:):) xxx

  7. Aw, I feel like you. People even dare to make it into a joke.
    Joke!
    If only it were. 😞
    Keep the fight.
    We must do so, or we will just give up & that will never do.
    Pain ,exhaustion & depression can’t win.
    Its already trying to take over.
    Cruel , relentless.
    Kind wishes, d x

    1. You are right D. We cannot let them win. I have been laughed at before as well, clearly by people who didnt understand and some who considered me lazy- which Ive been called too. I feel stronger just to know I am not alone in this fight. Thank you for sharing your experiences with me:) x

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