May is a strange month, especially in the current climate. For me, it also marks a year since my formal diagnosis of Fibromyalgia and hyper-mobility, National Fibromyalgia Awareness Day (May 12th), as well as a year of starting my blog. So, if you’re here, happy anniversary to you too! I’ve been popping into your inbox for about a year now and I’m so grateful that you came along for the ride. In my blogging journey, I’ve interviewed friends and family, met people on my travels that I now consider friends and family, reviewed products and places, highlighted some of my favourite causes, and I’m not done yet! Alongside my writing, I have been learning how to live with my diagnoses, both physically and mentally. It can be hard sometimes to see the reminders that pop up saying ‘2 years ago today’ where I might have been out for a run, or walking along a beach. It can be difficult when I spiral into thinking that I’ll never be able to do lots of those things again, but at the same time, I have spent this time being proud of what I can do. I have spent a lot of time hating my body and trying to punish it for what I felt were its failings. Now I am trying to teach myself to feel differently towards it. My dark purple stretch marks, a by-product of the hyper-mobility, show where I have moved and grown. My arms and legs have carried me through every day, even when they were aching, burning and weakened. My hands, although they shake and drop things, cramp and curl up, allowed me to write and express myself. My brain, although sometimes depressed or anxious, forgetting words or how to shape them with my mouth, also is filled with the incredible things that I have learned throughout my studies and the plans I have for my future.
This isn’t a pity post or some sort of inspirational ‘you don’t know when your life is going to change so don’t take anything for granted’ type message. It’s an anniversary card, letting my body know that I love it and thank it for all that it does for me, despite what society may encourage me to think about it failing. It’s a letter to you too, thanking you for supporting me with your readership. It’s a thank you to the medical staff who have tried their best to help me, even when there wasn’t a lot that they could do, and even a thank you to the physicians that told me I was ridiculous for thinking I might have Fibromyalgia, because I was far too young. Their disbelief of my pain did not discourage me from knowing my own body and seeking help.
If you’re in a position where you know something isn’t right, don’t let a singular opinion stop you from exploring all avenues. When one GP might not understand, another may. If a family member or friend doesn’t believe what you feel, another one will. I ended up using some of my student loan to see a private rheumatologist for a diagnosis as the NHS waiting list was understandably very long (however, I was fairly certain of my diagnosis prior to booking that appointment, so it was a sensible investment). Most of all, do not be discouraged when you know that something is wrong. My friends and family have all undergone disbelief from medical staff or relatives due to the invisible nature of some disorders. Often, if you’re not missing several limbs and bleeding profusely, it can be difficult for outsiders to appreciate what’s going on internally. I would just advise to be patient and persistent, because no one knows your body like you do.
For those with Fibromyalgia, symptoms can include (but are not limited to) :
- increased sensitivity to pain
- widespread pain (this could be described as dull/sharp/throbbing/aching/stinging/etc)
- extreme tiredness (fatigue)
- muscle stiffness
- difficulty sleeping
- problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
- irritable bowel syndrome, a digestive condition that causes stomach pain and bloating
For those with hyper-mobility (also referred to as hyper mobile EDS), symptoms and indicators can be:
- joint hypermobility
- loose, unstable joints that dislocate easily
- joint pain and clicking joints
- extreme tiredness (fatigue)
- skin that bruises easily
- digestive problems
- dizziness and an increased heart rate after standing up
- problems with internal organs, such as mitral valve prolapse or organ prolapse
- problems with bladder control
Please speak to you GP if you’re experiencing these symptoms. Although there isn’t a ‘cure’ a mix of medication and holistic therapies can really improve your life. I’m looking forward to getting into the NHS pain clinic to find out some more about the holistic options!
So once again, happy anniversary, everyone. Thank you for being a part of my story and we’ll speak soon.
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