#flareup #spoonie #ChronicPain #Fibro #Fibromyalgia And so it goes on…..

You just know it don’t you, when life is busy, there’s not a chance to breathe and you’re not managing to give yourself a moments attention. Fibro decides when it’s going to give you a break, but it also decides to whack you on the head completely unexpectedly.  I always know when I’m nearing my Annual Leave from work.  Fibro seems to predict and wants to wind down before I’m actually ready to.  As always, the last few weeks before I go are very hectic for me, so if FlareUp Fibro would just give me a bit of a break that would be nice!

Flare Up’s remind you of the worst that Fibro has to throw at you.  My eyeballs feel like huge rusted ball bearings with eyelids turned inside out.  Thump, thump, thump of pulsing headaches which radiate from my neck, into my shoulders and once again the notion of wanting to do away with my left arm rise above.  The worst part is when the brain and mouth are not connected and don’t talk to each other resulting in lost language, thought and concentration  It’s crazy to think that the body/mind can be so fu*ked up with mixed messages, neurons and referred pain.  No rhyme or reason, but that’s Fibro for you.

I have been fortunate to have got involved in project called Work4Me

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The Base Project supports self-employment using on-line tools.  I use a huge amount of technology, apps and widgets to help me do what I do anyway.  Everything I use on-line very much makes life easier for me, from reminders, diary dates, notebooks, combined email accounts, finance, business, training and specific apps that help with all aspect of my working life.  As my ultimate goal is to be based at home, working in a much healthier way, with a routine I can control, this is exactly what I’ve been looking for.   

So, it’s times like this that remind me what my ultimate goal is and how much I need to get on get myself ready for it. I’m not doing myself any favours carrying on the way I am but I know I have to take it one step at a time. 

 

Fog has descended | #fibromylagia #spoonie

A fog descends, all encompassing,
Suffocating and overpowering.
Eyes fair heavy full of sand
Head falls forward, unplanned.

Lost in space
Thoughts are scrambled,
Speech is lost
Completely rambled.

What to do
You cannot know,
There is no place
For fog to go.

Memory loss and disorientation are two of the most challenging symptoms of fibromyalgia. Suddenly not knowing where you are can lead to embarrassment or even panic.  Even more embarrassing is when you try to have a conversation and you have to stop mid-sentence, like instead of a comma, a full-stop has arrived, followed by &%$$^&()+@.  If I could implant a dictionary and thesaurus in my brain I’d could route around finding exactly what I need.

This is what 3 days of Fibro Fog do to you, lets hope it eases…………

Fibro doesn’t like to be on its own! #fibromyalgia

I was just pondering after putting up the photos I’d taken to reflect what Fibro means to me.  Fibro likes to have friends, it doesn’t like to be on its own, I think it likes something to battle with.  Many of us with Fibro will have other conditions that make the battle with Fibro all the more harder to cope with.  Some are quite minor, some are very variable and others stick like best friends to Fibro.

After mentioning TMD in one of my posts, it was interesting to read others who also experience this.  For me TMD was one of the first symptoms I had.  I didn’t have any muscle, pain or discomfort at the time and I was also running a lot.  I know when I was running I was clenching my jaw quite a lot, so it came as no surprise.  It also didn’t faze me that much because at the time that was all I had to deal with.  I got one of the spongy teeth guards when it turned out I had cracked one of my molars.  That was ok.

But it wasn’t, because then other ‘things’ started to occur.  The next was swelling, pain and numbness in my left hand and arm.  Then neck pain, shoulder pain.  Dry mouth, eyes and skin problems occurred I was then diagnosed with Sjogren’s Syndrome, but not until I’d been to the dental hospital, eye clinic and lastly dermatology.

In the middle of all this Fibro/Chronic Pain was mentioned and due to sleep problems I experience Chronic Fatigue.

Lastly, I have one condition that is not associated with Fibro but for some reason is assumed to be connected and that is Lymphoedema.   Classically with this condition you are not meant to experience pain and yet in my left hand/arm/shoulder where the swelling is I have pain.  The clinic separated this and said that they couldn’t be connected.  So I am no further forward in understanding where this has come from, why it’s around and what I can do about it.  I initially tried some lymphoedema sleeves and although they brought down the swelling I couldn’t continue to wear them because of the pain.

At the moment with the heat, I go to bed with a cool pack from the freezer which I lie my left arm on, as the hotter it gets the more uncomfortable it feels. I paid £40 to have my rings resized, but at least I can now where them again.  I’d been wearing them on my necklace for a while.

So, Fibro, I know you don’t like to be on your own, but I do wish you’d sometimes leave me alone!   Wishful thinking.

Night x

#Fibromyalgia Captured Pictures

It’s been a busy time since I last posted.  I’ve a lot going on at work and as I’m going away to the Highlands to switch off for a fortnight, it’s even busier finishing everything I need to do before I go away.   I always panic that I’ve forgotten something to do.  Those with Fibro will understand that memory is a real problem and I have continual lists on the go, memory prompts, and notes all over the place.  But what I really wanted to do with this post is display in pictures what my Fibro life is like.   So here it is.