September is apparently Pain Awareness Month. I've no idea who decides this stuff but it seems like as good a reason as any to make more people aware of what those like me with invisible conditions endure.
I was diagnosed with Fibromyalgia Syndrome (FMS) around 11 years ago, about a year after I first saw a GP with flu-like symptoms with a delightful side order of body-wide pain and a long list of seemingly random symptoms ranging from sleep issues to bowel problems.
I'd not long had my youngest daughter and so began a series of frustrating doctors appointments where I felt unheard, dismissed and disrespected. My husband came with me to one appointment in the hope they would listen to his experience of having to take me to the toilet, assist me in and out of the shower and even wash my hair for me.
One particularly annoying GP told me I was depressed. I assured him I wasn't - I have had Post Natal Depression and could see the difference. His shocking retort was that if he had as many children as me, he would be depressed. Another me at another time would have taken the matter further. But Fibro fatigue left me feeling incapable of anything but slinking away.
Thankfully, my mum, shocked at seeing the state of me when I flew to Cyprus to visit her, got me an appointment with a private rheumatologist who carried out an 18 point pressure test on me - 11 reactive points indicated a likely diagnosis of FMS. (I understand this test is no longer widely used.)
Given my symptoms and my reactions to the test she broke it to me that I had a widely misunderstood, incurable chronic pain, chronic fatigue condition. This diagnosis was confirmed by my GP back in the UK.
After some initial relief I didn't have MS the reality of my situation hit and I went through the classic stages of grief. I was angry for a long time.
I had some hope that like many sufferers I might get relief after the menopause. My symptoms are definitely impacted by hormone activity. But no such relief has occurred and in fact my condition will flare when my older daughter is menstruating. I feel lucky I have five boys and two girls and not vice versa!
Everyone's experience and reaction to these kind of invisible conditions is different and Ive discovered that one person's "cure" is another person's snake oil.
I have a wheelchair which I use reluctantly when the perfect storm of fatigue, fog and pain descend. Mostly when I am flaring I stay hidden at home. I take nortriptyline at bedtime which helps with my peculiar skin sensations which are worst at night.
I underwent Cognitive Behaviour Therapy which I found frustrating and pointless. As a busy mum of 7 much of the pacing advice was impractical and unacceptable to my particular personality type.
I found the spoon theory most useful - the idea that you start each day with a handful of spoons and each activity takes a certain number of spoons. You decide what to "spend" your spoons on.
For instance I've learned that showering takes quite a few spoons for me so I will sometimes skip a full shower and either just wash my hair or wash with a flannel. Having my hair ultra short helps a lot as it rarely looks dirty or greasy.
Often preparing the evening meal is a step too far. I'm lucky that my children are pretty self sufficient and will often sort dinner out for all of us. More spoons left for me to work or manage the school run.
I am lucky that on the whole my friends and family are very understanding about my Fibro. Cancelled plans, early nights, difficult conversations where I can't remember names or words, situations where I have forgotten what I was meant to be doing or where I was meant to be... the list goes on.
Nowadays my attitude to the condition which runs my life is acceptance mixed with occasional frustration.
I always admit that If I hadn't developed Fibromyalgia I'm not sure I'd believe it exists. Harsh but honest. But I am a get up and go type of person who hates wasting any of this precious life in bed, in a chair, in a wheelchair. Why would I imagine or make up a condition which slows me down, makes me miss out, holds me back?
I am sure some people think I'm exaggerating my symptoms, wonder why I have a Blue Badge when I look normal. I sometimes feel I should fake a limp to demonstrate my disability. That badge has been the single most useful tool against this bloody condition. I feel safe knowing I can nip to Tesco, shop in town, park at the station and not have to walk miles.
And since my earning potential is limited by my inability to cope with a regular job, the discounts it offers means our tight budget stretches further. I know some people have been badge shamed but I have been lucky - on the whole although people might stare they don't attack. Although only this week I heard a woman say: "I'm just going to wait here and check she has a blue badge for where she's parking."
This is not meant to be a pity party, just a brief glance into my experience of an invisible condition. I have children with autism which they often manage to mask so I am hoping that by encouraging people to be accepting, tolerant and mindful that not all disabilities are always visible that I am helping to build a happier and easier future for them.
I was diagnosed with Fibromyalgia Syndrome (FMS) around 11 years ago, about a year after I first saw a GP with flu-like symptoms with a delightful side order of body-wide pain and a long list of seemingly random symptoms ranging from sleep issues to bowel problems.
I'd not long had my youngest daughter and so began a series of frustrating doctors appointments where I felt unheard, dismissed and disrespected. My husband came with me to one appointment in the hope they would listen to his experience of having to take me to the toilet, assist me in and out of the shower and even wash my hair for me.
One particularly annoying GP told me I was depressed. I assured him I wasn't - I have had Post Natal Depression and could see the difference. His shocking retort was that if he had as many children as me, he would be depressed. Another me at another time would have taken the matter further. But Fibro fatigue left me feeling incapable of anything but slinking away.
Thankfully, my mum, shocked at seeing the state of me when I flew to Cyprus to visit her, got me an appointment with a private rheumatologist who carried out an 18 point pressure test on me - 11 reactive points indicated a likely diagnosis of FMS. (I understand this test is no longer widely used.)
Given my symptoms and my reactions to the test she broke it to me that I had a widely misunderstood, incurable chronic pain, chronic fatigue condition. This diagnosis was confirmed by my GP back in the UK.
After some initial relief I didn't have MS the reality of my situation hit and I went through the classic stages of grief. I was angry for a long time.
I had some hope that like many sufferers I might get relief after the menopause. My symptoms are definitely impacted by hormone activity. But no such relief has occurred and in fact my condition will flare when my older daughter is menstruating. I feel lucky I have five boys and two girls and not vice versa!
Everyone's experience and reaction to these kind of invisible conditions is different and Ive discovered that one person's "cure" is another person's snake oil.
I have a wheelchair which I use reluctantly when the perfect storm of fatigue, fog and pain descend. Mostly when I am flaring I stay hidden at home. I take nortriptyline at bedtime which helps with my peculiar skin sensations which are worst at night.
I underwent Cognitive Behaviour Therapy which I found frustrating and pointless. As a busy mum of 7 much of the pacing advice was impractical and unacceptable to my particular personality type.
I found the spoon theory most useful - the idea that you start each day with a handful of spoons and each activity takes a certain number of spoons. You decide what to "spend" your spoons on.
For instance I've learned that showering takes quite a few spoons for me so I will sometimes skip a full shower and either just wash my hair or wash with a flannel. Having my hair ultra short helps a lot as it rarely looks dirty or greasy.
Often preparing the evening meal is a step too far. I'm lucky that my children are pretty self sufficient and will often sort dinner out for all of us. More spoons left for me to work or manage the school run.
I am lucky that on the whole my friends and family are very understanding about my Fibro. Cancelled plans, early nights, difficult conversations where I can't remember names or words, situations where I have forgotten what I was meant to be doing or where I was meant to be... the list goes on.
Nowadays my attitude to the condition which runs my life is acceptance mixed with occasional frustration.
I always admit that If I hadn't developed Fibromyalgia I'm not sure I'd believe it exists. Harsh but honest. But I am a get up and go type of person who hates wasting any of this precious life in bed, in a chair, in a wheelchair. Why would I imagine or make up a condition which slows me down, makes me miss out, holds me back?
I am sure some people think I'm exaggerating my symptoms, wonder why I have a Blue Badge when I look normal. I sometimes feel I should fake a limp to demonstrate my disability. That badge has been the single most useful tool against this bloody condition. I feel safe knowing I can nip to Tesco, shop in town, park at the station and not have to walk miles.
And since my earning potential is limited by my inability to cope with a regular job, the discounts it offers means our tight budget stretches further. I know some people have been badge shamed but I have been lucky - on the whole although people might stare they don't attack. Although only this week I heard a woman say: "I'm just going to wait here and check she has a blue badge for where she's parking."
This is not meant to be a pity party, just a brief glance into my experience of an invisible condition. I have children with autism which they often manage to mask so I am hoping that by encouraging people to be accepting, tolerant and mindful that not all disabilities are always visible that I am helping to build a happier and easier future for them.