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  • throughthefibrofog
    Claire, London UK
    @throughthefibrofog

Images by throughthefibrofog

So first of all I want to say that I don’t mean to exclude anyone by saying ‘Christmas’ in the post.
Of course some people don’t celebrate Christmas or celebrate other religious days.
I just couldn’t put that in as it went over the character count.
Please don’t think I’m being offensive in any way - I promise I’m not trying to be.
Back to the topic of the post . . .
Does the holiday period make you nervous?
All the activities of shopping, cooking, having friends and family around?
I feel better able to deal with it this year (if it wasn’t for the mcas facial pain that will not go away).
And have started early on getting gifts for family 🎁.
But still a bit nervous about cooking and the hectic nature of the day.
What are your thoughts?
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#fibromyalgia #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #hypermobility #migraine #headache #vertigo #vestibularmigraine #mcas #mcad #mastcellactivation #raynauds #smallfiberneuropathy #chronicillness #christmas
So first of all I want to say that I don’t mean to exclude anyone by saying ‘Christmas’ in the post. Of course some people don’t celebrate Christmas or celebrate other religious days. I just couldn’t put that in as it went over the character count. Please don’t think I’m being offensive in any way - I promise I’m not trying to be. Back to the topic of the post . . . Does the holiday period make you nervous? All the activities of shopping, cooking, having friends and family around? I feel better able to deal with it this year (if it wasn’t for the mcas facial pain that will not go away). And have started early on getting gifts for family 🎁. But still a bit nervous about cooking and the hectic nature of the day. What are your thoughts? . #fibromyalgia  #posturalorthostatictachycardiasyndrome  #ehlersdanlossyndrome  #hypermobility  #migraine  #headache  #vertigo  #vestibularmigraine  #mcas  #mcad  #mastcellactivation  #raynauds  #smallfiberneuropathy  #chronicillness  #christmas 
So today I made it to Kew Gardens again.
In fact I’m still there having a cup of tea before braving the tube home.
Love it here.
Here’s some photos for some light relief.
Lunch time - sitting by the Japanese Gardens.
Peacock appears.
Oh, so beautiful I think.
He comes over and I take the first picture.
Then he realises I have food . . .
He comes even closer, so close that I have to shoo him away because he was literally at my feet.
He walks off.
Or so I think.
I turn around and, as per picture 3, he sneakily tries to grab my roll.
Made me laugh.
And it’s important to have a nice day and a laugh as much as you can.
I can’t afford to come here that often because tube fares etc etc add up.
But we have a family ticket so I don’t have to pay to come in each time.
I plan to take advantage of this next spring and summer.
Because a bit of tree and plant and peacock related rest is always good in my book!
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#fibromyalgia #pots #migraine #eds #ehlersdanlossyndrome #vertigo #headache #mcas #mcad #kewgardens #london #peacock
So today I made it to Kew Gardens again. In fact I’m still there having a cup of tea before braving the tube home. Love it here. Here’s some photos for some light relief. Lunch time - sitting by the Japanese Gardens. Peacock appears. Oh, so beautiful I think. He comes over and I take the first picture. Then he realises I have food . . . He comes even closer, so close that I have to shoo him away because he was literally at my feet. He walks off. Or so I think. I turn around and, as per picture 3, he sneakily tries to grab my roll. Made me laugh. And it’s important to have a nice day and a laugh as much as you can. I can’t afford to come here that often because tube fares etc etc add up. But we have a family ticket so I don’t have to pay to come in each time. I plan to take advantage of this next spring and summer. Because a bit of tree and plant and peacock related rest is always good in my book! . #fibromyalgia  #pots  #migraine  #eds  #ehlersdanlossyndrome  #vertigo  #headache  #mcas  #mcad  #kewgardens  #london  #peacock 
AF awareness week is next week (20-26 November).
AF is a heart rhythm disorder so check your pulse or ask a doctor to do so!
I haven’t got a heart rhythm disorder but it’s still important to check ourselves for these kinds of things and it only takes a few minutes to do!
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #hypermobility #migraine #headache #vertigo #mcas #mcad #mastcellactivation #dizzy #pain #fatigue #raynauds #smallfiberneuropathy #checkyourpulse #afawarenessweek #afawareness
AF awareness week is next week (20-26 November). AF is a heart rhythm disorder so check your pulse or ask a doctor to do so! I haven’t got a heart rhythm disorder but it’s still important to check ourselves for these kinds of things and it only takes a few minutes to do! . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlossyndrome  #hypermobility  #migraine  #headache  #vertigo  #mcas  #mcad  #mastcellactivation  #dizzy  #pain  #fatigue  #raynauds  #smallfiberneuropathy  #checkyourpulse  #afawarenessweek  #afawareness 
Still some flowers out there despite the cold!
It’s been a funny few days.
Diagnosed with small-fibre neuropathy end of last week.
It wasn’t a surprise - I have tingly toes a lot of the time and there’s an association with fibromyalgia.
So now I’m waiting for some skin biopsies and I had some blood tests at the hospital.
It feels as though the tests just keep coming . . .
Also waiting for another appointment for a HIDA scan and a cardiac MRI.
Anyone else feel dominated by medical tests?
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #hypermobility #migraine #headache #vertigo #vestibular #mcas #mcad #mastcellactivation #smallfiberneuropathy #raynauds #dizzy #pain #fatigue #flowers
Still some flowers out there despite the cold! It’s been a funny few days. Diagnosed with small-fibre neuropathy end of last week. It wasn’t a surprise - I have tingly toes a lot of the time and there’s an association with fibromyalgia. So now I’m waiting for some skin biopsies and I had some blood tests at the hospital. It feels as though the tests just keep coming . . . Also waiting for another appointment for a HIDA scan and a cardiac MRI. Anyone else feel dominated by medical tests? . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlossyndrome  #hypermobility  #migraine  #headache  #vertigo  #vestibular  #mcas  #mcad  #mastcellactivation  #smallfiberneuropathy  #raynauds  #dizzy  #pain  #fatigue  #flowers 
So it looks as though I’m about to be diagnosed with small-fibre neuropathy as my nerves have been shown to do ‘strange things’ during a test.
However, my neurologist wasn’t too helpful on what that actually means.
I have some numbness in my feet and tingling in them and my hands as well.
Does it cause you any other symptoms of you suffer from this?
Any tips that help with symptoms?
Thanks for any advice!
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #dysautonomiaawareness #dysautonomia #eds #ehlersdanlossyndrome #smallfiberneuropathy #migraine #headache #mcas #mcad #mastcellactivation #vertigo #vestibularmigraine #raynauds #chronicillness #chronicpain #chronicfatigue #dizzy #pain #fatigue
So it looks as though I’m about to be diagnosed with small-fibre neuropathy as my nerves have been shown to do ‘strange things’ during a test. However, my neurologist wasn’t too helpful on what that actually means. I have some numbness in my feet and tingling in them and my hands as well. Does it cause you any other symptoms of you suffer from this? Any tips that help with symptoms? Thanks for any advice! . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #dysautonomiaawareness  #dysautonomia  #eds  #ehlersdanlossyndrome  #smallfiberneuropathy  #migraine  #headache  #mcas  #mcad  #mastcellactivation  #vertigo  #vestibularmigraine  #raynauds  #chronicillness  #chronicpain  #chronicfatigue  #dizzy  #pain  #fatigue 
My new gym!
Only four weights machines but it’s free, it’s in the fresh air and it rarely has anyone else there so no queues!
Been told to increase my exercise even more.
Apparently walking for about 40 mins isn’t enough.
So got to look into getting an exercise bike - although don’t really have the space for it at home . . .
At least my weights machines are just at the local park!
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #hypermobility #migraine #headache #vertigo #vestibular #mcas #mcad #mastcellactivationsyndrome #chronicillness #exercise #gym #outdoorgym
My new gym! Only four weights machines but it’s free, it’s in the fresh air and it rarely has anyone else there so no queues! Been told to increase my exercise even more. Apparently walking for about 40 mins isn’t enough. So got to look into getting an exercise bike - although don’t really have the space for it at home . . . At least my weights machines are just at the local park! . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #dysautonomia  #eds  #ehlersdanlossyndrome  #hypermobility  #migraine  #headache  #vertigo  #vestibular  #mcas  #mcad  #mastcellactivationsyndrome  #chronicillness  #exercise  #gym  #outdoorgym 
I often slip into feelings of hopelessness and sadness for how much my life has changed over the past six to seven years.
And it is easy to have a negative view of yourself.
I’m not perfect and do slip into that mindset - right now for example during a flare up of symptoms.
But my logical mind also knows that thinking badly about myself isn’t going help and will actually make me more stressed which will in turn make the symptoms worse.
So try and believe in yourself a little more - I’m trying too as well!
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #hypermobility #migraine #headache #vertigo #vestibular #dizzy #balance #mcas #mcad #mastcellactivation #mastcellactivationdisorder #raynauds #chronicillness #chronicpain #chronicfatigue #pain #fatigue
I often slip into feelings of hopelessness and sadness for how much my life has changed over the past six to seven years. And it is easy to have a negative view of yourself. I’m not perfect and do slip into that mindset - right now for example during a flare up of symptoms. But my logical mind also knows that thinking badly about myself isn’t going help and will actually make me more stressed which will in turn make the symptoms worse. So try and believe in yourself a little more - I’m trying too as well! . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #dysautonomia  #eds  #ehlersdanlossyndrome  #hypermobility  #migraine  #headache  #vertigo  #vestibular  #dizzy  #balance  #mcas  #mcad  #mastcellactivation  #mastcellactivationdisorder  #raynauds  #chronicillness  #chronicpain  #chronicfatigue  #pain  #fatigue 
Today was supposed to be HIDA scan day.
I followed all the guidelines.
Got up at 6.30am.
Didn’t drink or eat (so hard with a sore throat!).
Packed my bag and got there on time.
But, as has happened before, they wouldn’t do the scan . . . 
As I have MCAS I can’t have certain medications and as the staff didn’t know the ingredients of the medication they were going to give me they wanted to check before I had the scan with the doctor.
Who of course wasn’t there.
So now waiting for another appointment.
Rather frustrating to say the least.
Do my fellow MCAS sufferers have the same problem?
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #migraine #headache #chronicheadache #mcas #mcad #mastcellactivation #mastcellactivationdisorder #mastcellactivationsyndrome #vertigo #vestibularmigraine #raynauds #chronicillness #chronicpain #chronicfatigue #invisibleillness
Today was supposed to be HIDA scan day. I followed all the guidelines. Got up at 6.30am. Didn’t drink or eat (so hard with a sore throat!). Packed my bag and got there on time. But, as has happened before, they wouldn’t do the scan . . . As I have MCAS I can’t have certain medications and as the staff didn’t know the ingredients of the medication they were going to give me they wanted to check before I had the scan with the doctor. Who of course wasn’t there. So now waiting for another appointment. Rather frustrating to say the least. Do my fellow MCAS sufferers have the same problem? . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #dysautonomia  #eds  #ehlersdanlossyndrome  #migraine  #headache  #chronicheadache  #mcas  #mcad  #mastcellactivation  #mastcellactivationdisorder  #mastcellactivationsyndrome  #vertigo  #vestibularmigraine  #raynauds  #chronicillness  #chronicpain  #chronicfatigue  #invisibleillness 
New blog post over on throughthefibrofog.com talking about new initiatives that - hopefully - will draw awareness to the fact that not every disability is visible and help those with all forms of disability or health condition.
Hope you like it!
.
P.S. sorry about the small type on the blog - I’ve tried to increase the size but it doesn’t seem possible using the template that I have (and I’m just not tech knowledgeable enough to change the template!).
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#fibromyalgia #posturalorthostatictachycardiasyndrome #pots #eds #ehlersdanlossyndrome #dysautonomia #migraine #headache #vertigo #vestibular #mcas #mcad #mastcellactivation #mastcellactivationsyndrome #raynauds #invisibleillness #noteverydisabilityisvisible #chronicillness #chronicpain #chronicfatigue
New blog post over on throughthefibrofog.com talking about new initiatives that - hopefully - will draw awareness to the fact that not every disability is visible and help those with all forms of disability or health condition. Hope you like it! . P.S. sorry about the small type on the blog - I’ve tried to increase the size but it doesn’t seem possible using the template that I have (and I’m just not tech knowledgeable enough to change the template!). . #fibromyalgia  #posturalorthostatictachycardiasyndrome  #pots  #eds  #ehlersdanlossyndrome  #dysautonomia  #migraine  #headache  #vertigo  #vestibular  #mcas  #mcad  #mastcellactivation  #mastcellactivationsyndrome  #raynauds  #invisibleillness  #noteverydisabilityisvisible  #chronicillness  #chronicpain  #chronicfatigue 
Starting to get some nerve about having a HIDA scan at the end of the week.
Anyone else had one?
It says I have to drink a milkshake (lactose intolerant- eek! How’s that going to work?), have an injection (mast cell issue?) and then have a 60 minute scan.
Not sure which of those three issues to be most concerned about!
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#fibromyalgia #pots #eds #migraine #headache #vertigo #mcas #mcad #hidascan #dysautonomia #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #vestibularmigraine #mastcellactivation #hypermobility #chronicillness #chronicfatigue #chronicpain #invisibleillness
Starting to get some nerve about having a HIDA scan at the end of the week. Anyone else had one? It says I have to drink a milkshake (lactose intolerant- eek! How’s that going to work?), have an injection (mast cell issue?) and then have a 60 minute scan. Not sure which of those three issues to be most concerned about! . #fibromyalgia  #pots  #eds  #migraine  #headache  #vertigo  #mcas  #mcad  #hidascan  #dysautonomia  #posturalorthostatictachycardiasyndrome  #ehlersdanlossyndrome  #vestibularmigraine  #mastcellactivation  #hypermobility  #chronicillness  #chronicfatigue  #chronicpain  #invisibleillness 
No caption or discussion needed for this I think.
There are a whole list of medical conditions that can’t be ‘seen’ by looking at a person.
It doesn’t mean that a person isn’t having health issues, that they may be in pain or suffering other discomfort.
We all deserve recognition for health issues whether they can be seen or not.
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #migraine #headache #dysautonomia #vertigo #vestibular #raynauds #mcas #mcad #mastcellactivationdisorder #chronicpain #chronicillness #invisibleillness
No caption or discussion needed for this I think. There are a whole list of medical conditions that can’t be ‘seen’ by looking at a person. It doesn’t mean that a person isn’t having health issues, that they may be in pain or suffering other discomfort. We all deserve recognition for health issues whether they can be seen or not. . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlossyndrome  #migraine  #headache  #dysautonomia  #vertigo  #vestibular  #raynauds  #mcas  #mcad  #mastcellactivationdisorder  #chronicpain  #chronicillness  #invisibleillness 
Just finalising a blog post on new measures in the UK 🇬🇧 that *hopefully* will draw attention to different forms of disability and the need to assist people with non-visible disabilities. Will post when it’s up on the blog!
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Meanwhile, more autumnal colours from Kew Gardens!
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#fibromyalgia #pots #dysautonomia #eds #ehlersdanlossyndrome #migraine #headache #mcas #mcad #vertigo #vestibularmigraine #raynauds #chronicillness #chronicpain #chronicfatigue #invisibleillness #invisibleillnessawareness #autumn #kewgardens #london
Just finalising a blog post on new measures in the UK 🇬🇧 that *hopefully* will draw attention to different forms of disability and the need to assist people with non-visible disabilities. Will post when it’s up on the blog! . Meanwhile, more autumnal colours from Kew Gardens! . #fibromyalgia  #pots  #dysautonomia  #eds  #ehlersdanlossyndrome  #migraine  #headache  #mcas  #mcad  #vertigo  #vestibularmigraine  #raynauds  #chronicillness  #chronicpain  #chronicfatigue  #invisibleillness  #invisibleillnessawareness  #autumn  #kewgardens  #london 
Do you get ocular migraines?
I’ve just had one this morning, which is rather rare for me.
Only had about four or five ever.
I didn’t have too much head pain; in fact it was a very low pain day.
Which made it more confusing!
Do you notice if anything triggers the visual type of migraines rather than ‘regular’ migraines (so to speak - there’s nothing regular or irregular when it comes to migraines it seems!).
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#fibromyalgia #pots #eds #migraine #headache #chronicheadache #ocularmigranes #vertigo #vestibularmigraine #mcas #mcad
Do you get ocular migraines? I’ve just had one this morning, which is rather rare for me. Only had about four or five ever. I didn’t have too much head pain; in fact it was a very low pain day. Which made it more confusing! Do you notice if anything triggers the visual type of migraines rather than ‘regular’ migraines (so to speak - there’s nothing regular or irregular when it comes to migraines it seems!). . #fibromyalgia  #pots  #eds  #migraine  #headache  #chronicheadache  #ocularmigranes  #vertigo  #vestibularmigraine  #mcas  #mcad 
Up at 6.30am to have enough time for my vestibular and autonomic systems to sort themselves out 😂before getting a train to a medical appointment at 9am. Also full of cold and a lovely cough that I’m sure the other commuters will appreciate. . .
Feels like it’s going to be one of those days . . .
So here’s another picture of some hanging flowers 💐 🌷 🌹 as they are so pretty.
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#fibromyalgia #pots #eds #ehlersdanlossyndrome #dysautonomia #migraine #headache #mcas #mcad #vertigo #vestibular #raynauds #cold #flowers
Up at 6.30am to have enough time for my vestibular and autonomic systems to sort themselves out 😂before getting a train to a medical appointment at 9am. Also full of cold and a lovely cough that I’m sure the other commuters will appreciate. . . Feels like it’s going to be one of those days . . . So here’s another picture of some hanging flowers 💐 🌷 🌹 as they are so pretty. . #fibromyalgia  #pots  #eds  #ehlersdanlossyndrome  #dysautonomia  #migraine  #headache  #mcas  #mcad  #vertigo  #vestibular  #raynauds  #cold  #flowers 
I don’t suffer with claustrophobia myself, but I know lots of people who don’t like being underground on the tube.
There’s a map showing where the tunnels are on the tube on the tfl website.
Just click on maps and then tube. 
It’s at the bottom of the page.
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #migraine #chronicheadache #vertigo #vestibularmigraine #mcas #mcad #mastcellactivationdisorder #raynauds #chronicfatigue #chronicpain #chronicillness #invisibleillness #london #tube #tubemap #tunnels #claustrophobia
I don’t suffer with claustrophobia myself, but I know lots of people who don’t like being underground on the tube. There’s a map showing where the tunnels are on the tube on the tfl website. Just click on maps and then tube. It’s at the bottom of the page. . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlossyndrome  #migraine  #chronicheadache  #vertigo  #vestibularmigraine  #mcas  #mcad  #mastcellactivationdisorder  #raynauds  #chronicfatigue  #chronicpain  #chronicillness  #invisibleillness  #london  #tube  #tubemap  #tunnels  #claustrophobia 
I might be a day late, but still loving the pumpkins this year 🎃.
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#fibromyalgia #pots #dysautonomia #eds #ehlersdanlossyndrome #migraine #vertigo #vestibularmigraine #headache #mcas #mcad #pumpkins
Even though I’m offered it every year I haven’t ever had the flu jab.
I’m a bit nervous about side-effects . . .
Have you had it?
Positive experience or not?
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#fibromyalgia #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #migraine #headache #chronicheadache #vertigo #vestibular #dizzy #mcas #mcad #fatigue #raynauds #chronicillness #flujab #flu #winter
Ok this is a rather pathetic attempt at carving a 🎃 I know.
But there was a grizzling baby and a moody toddler in the mix.
The toddler who wanted to carve 🎃 but then decided she was scared of it.
It wasn’t even lit.
She was basically scared of an orange fruit . . . 
Anyway, I have come to think that celebrating little events like this are important - especially with the kids - so we soldiered on.
I didn’t really think that much about holidays before I became unwell.
Now I see them as an opportunity to do something a bit different and spend some time with the family.
So here’s a badly carved 🎃 for the Instagram feed.
Hope you had a good day as well.
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #hypermobility #migraine #headache #vertigo #vestibular #dizzy #pain #fatigue #mcas #mcad #mastcellactivation #raynauds #chronicillness #chronicpain #chronicfatigue #invisibleillness #halloween #pumpkin #carvedpumpkin #ghost
Ok this is a rather pathetic attempt at carving a 🎃 I know. But there was a grizzling baby and a moody toddler in the mix. The toddler who wanted to carve 🎃 but then decided she was scared of it. It wasn’t even lit. She was basically scared of an orange fruit . . . Anyway, I have come to think that celebrating little events like this are important - especially with the kids - so we soldiered on. I didn’t really think that much about holidays before I became unwell. Now I see them as an opportunity to do something a bit different and spend some time with the family. So here’s a badly carved 🎃 for the Instagram feed. Hope you had a good day as well. . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #dysautonomia  #eds  #ehlersdanlossyndrome  #hypermobility  #migraine  #headache  #vertigo  #vestibular  #dizzy  #pain  #fatigue  #mcas  #mcad  #mastcellactivation  #raynauds  #chronicillness  #chronicpain  #chronicfatigue  #invisibleillness  #halloween  #pumpkin  #carvedpumpkin  #ghost