The Fibromyalgia Years

Health brings a freedom very few realise, until they no longer have it.

It’s true. Most of don’t appreciate our health until it’s gone. It’s only when we become ill, that we understand what a humongous loss it really is.

Aside mental health problems, I’ve always been relatively fit and healthy. I would think nothing of decorating an entire room (from top to bottom) in one day. This would include a couple of hours kip in-between AND working part-time. However, six years ago my mum died (suddenly) and I’ve felt ill ever since.

I’ve had tests done on my body from brain to bum and the results have failed to show anything wrong aside low vitamin D levels. Blood tests? Put it this way. The NHS has more of my blood than I do! Only I never got tea and biscuits.

I’ve been told, time and time again, that it’s ALL down to anxiety. Or age. (I’M 47!!)

I’ve told doctors (time and time again) that something physical is driving the anxiety – not the other way around.

Turns out, I was right all along.

The Discovery

A few weeks ago I was at the doctors. Quelle surprise? Originally, this appointment was to whinge about my painful legs, but I’d had an horrendous night sleep (less) wise, so I decided to moan about that instead. I suggested that my insomnia could be connected to my congested sinuses – a condition I’ve been complaining of for the last two years. So I came away with a prescription for a steroid nasal spray and a referral to an allergist with the warning that the waiting list is massive and I probably won’t get an appointment until about 2046.* Half an hour later later, I snorted some steroid up my nostrils and waited for the ‘pipes’ to clear.

At the same time, I noticed a tight feeling in my chest. I’ve had it before, so I didn’t fall down the rabbit-hole of health anxiety. My therapist would be proud of me, no?

I’m no stranger to chest pain. I’ve had tingling, tightness, pain and muscle spasms galore, but my heart is allegedly healthy. The symptoms usually disappear after a few days to be replaced with pain elsewhere in my body. This time, I thought it could be the steroid, so I stopped taking it and made another appointment to see the GP. She didn’t think this was the case because the nature of steroids are to open the airways, not the reverse. However, she did agree that it seemed too much of a coincidence for it not to be related and so advised not use it again. A week later, I still had the tightness and was struggling to breathe, especially at night.

Meanwhile, I happened to notice that a lot of autistic people had fibromyalgia or ME in their bios. I’d heard of ME, but didn’t know anything about fibromyalgia. So I researched it and there was EVERY SYMPTOM that I have been going to the doctors with for the past six years – including tightness in the chest! (Technical jargon? Costochondritisnoncardiac chest pain or musculoskeletal chest pain)

It was a ‘light-bulb moment’, because I knew that I had finally found out what’s wrong with me.

Armed with a sheet of A4 paper with Fibromyalgia symptoms, I limped off to see my GP. It wasn’t the one who’d prescribed me the steroids (she was on leave) but I’d seen this one just as many times with other symptoms. He studied the paper and said, ‘Yes, fibromyalgia has crossed my mind, but we need to do some elimination tests to rule out other stuff’.

The ‘other stuff’ (such as rheumatoid arthritis) was ruled out and last week I was formally diagnosed with fibromyalgia.

*hallelujah*

Maybe, if I’d have seen the same doctor over the past six years, he/she would have reached this conclusion earlier? As it is, I’ve seen three doctors in all, so nobody had the whole story unless they took the time to trawl through my numerous notes and, trust me, nobody has that kind of time. If patients notes were still in paper form, they’d need a wheelbarrow to cart mine around. However, had they have read through them, they would have probably realised that the following symptoms (in the absence of other conditions/diseases) suggest fibromyagia.

  • Chest pain
  • IBS
  • Food sensitivities
  • Allergies
  • Medication sensitivities
  • Fatigue
  • Muscle spasms
  • Burning mouth
  • Insomnia
  • Palpitations
  • Migraines
  • Neck and back pain
  • Abdominal pain
  • Congested sinuses (for two years)
  • Inability to control body temperature
  • Low Vitamin D levels
  • Pins and needles in arms, hands and feet.
  • Dizziness
  • Headaches
  • Brain fog

So, I now know what’s wrong with me. I have fibromyalgia. So what does this mean?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”. Fibromyalgia Syndrome (fibromyalgia for short) is a common illness. In fact, it is as common as rheumatoid arthritis and can even be more painful. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.

If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. – FMA UK

In simplest terms, it’s a life of shite in varying degrees.

Fibromyalgia isn’t a disease and it’s not life-threatening (thank fuck) but it is limiting.

Imagine having toothache. Painful, right? You can’t enjoy life, but you know that the dentist will numb you up, yank the offending tooth out of your mouth and the pain will go away. With fibromyalgia, the pain just moves to another area of the body. Sucks, huh?

I’m frustrated with my lack of mobility. Some days, I struggle to walk. This is especially the case in cold and damp weather. I live in England, so that’s pretty much ALL of the time.

After lying or sitting, I’m stiff as a board and I kind of have to shuffle my way off chairs and roll out of bed sideways, which is about as alluring as athletes foot.

I can’t do tasks which involve looking up without them causing me severe pain in my neck.

Sitting in the car can be painful because of my lower back and my neck hurts with every jolt of the vehicle.

Or I get migraines which wipe me out for days.

I could go on, but I’m starting to bore myself. You get the picture, right?

After the initial euphoria of getting an answer to why I’ve felt so shit for the last six years, the reality is setting in: This feeling shit? It’s basically me for the rest of my life.

*sound of balloon noisily deflating*

I had this fantasy that my anxiety would decrease, my menopausal symptoms would level out and I would get some quality of life. I would get the old me back. Little did I know that the anxiety and being menopausal were masking what was really wrong as some of the symptoms overlap and once you’re labelled as a hypochondriac, it kind of sticks.

I feel guilty for feeling sad because my friend would have given anything for her diagnosis to be fibromyalgia instead of cancer, but this is how I feel. This is my reality. Fibromyalgia won’t kill me, but everything is relative and living with long-term (and constant) pain affects you mentally as well as physically.

Also, I’ve had two life-changing diagnoses in two years. Autism and now this, so it’s natural to feel a little overwhelmed, right?

I accept that, being highly anxious, I was probably always going to develop some kind of stress-related illness or condition. I know this could be a lot worse and no doubt it will be if I don’t learn to chill the fark out. I’ve demanded a lot from my body over the years by constantly flooding it with stress-hormones, but I do believe the sudden death of my mother was the trigger for this condition.

Stress caused this.

Stress makes my symptoms flare up – as does the shitty British weather.

My body has deployed the SOS flare. That red glow in the sky? It’s not the sun setting, folks – it’s my body begging for help.

I mentioned earlier that I used to be able to decorate a room in one day? Now I do half a wall and I’m in pain for a week. It’s frustrating not to be able to do what I want to do, when I want to do it. I will adapt, but I need time to accept this version of me. The knackered one. It is what it is. I can only try my best to limit the damage and view this as a warning. My body’s way of saying, ‘Do something about your stress levels or die early of a heart attack, cancer or stroke, dear’.

I’ll find the humour in the situation, as I do with most other challenges in my life. At least I can still laugh, only not too hard cus it hurts. Until then, I need to have a little sulk for the loss of the person I once was.

RIP, old me.

The moral of this story is to listen to your body. The NHS is wonderful and doctors are hard-working and magnificent, but they are not infallible. They don’t get things right every time. Doctors are great with disease and emergencies, but not so great when it comes to ‘invisible’ conditions which require a bit of detective work and, ultimately, nobody understands our own bodies better than us, right?

*Slight exaggeration.

Not Being Me

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“Follow your inner moonlight; don’t hide the madness.” Allen Ginsberg

Throughout my years of blogging I have always made it clear that I have life-long issues relating to social communication and sensory issues.

I was a misfit from the moment I started school at five years old. Why five? Well because it was just me until then – me, the Golden Labrador next door and my rather fabulous inner world. I had no reason to know I was different.

Since then life has been difficult at best. At worst, it’s made me ill.

I’m ill now having hit a crisis point with the general anxiety disorder I’ve had for the last three years.

I have always had anxiety right from as far back as I can remember. As a child I was generally THAT pale I looked as if I’d been exhumed and I had one ailment after another. I didn’t understand it was anxiety at the time and I feel sorry for that little girl because as bad as I feel now at least I know why I feel like I do. Little girl me didn’t have a clue and was very scared. I couldn’t tell anybody. How could I when I didn’t know how to?

I don’t know what it’s like NOT to have anxiety in some degree or other.

The things that most people do effortlessly are challenges for me. As soon as I go through the front door I have to pretend to be normal, whatever normal is. All I know that after 40 odd years of observation, on a good day I can pass for ‘normal’. On a bad day you’d be sending round the nutter van. This is because pretending to be normal takes effort and it’s exhausting. It exhausts body and mind and after all this time, well, I’m knackered.

Online I get to communicate without the problems I get when faced with actual human beings. The barrier between me and the outside world allows me to interact in a way that I’m unable to in life without making myself stand out. So what I am going to say may come as a surprise to people who interact with me online..

You see, for most of my life I have been aware that I am different but I’ve never known why. I must have spent hundreds of pounds trying to find myself within the pages of self-help books. Bouts of anxiety and depression over the years have led to therapy but therapy for what?

I never knew what was wrong with me and it REALLY bothered me.

My list of problems is ENORMOUSLY LONG but here are a few things.

Things like..

Avoiding answering the door or the phone.

Being unable to walk into a room full of people.

Certain materials make me feel so irritable and uncomfortable. (Nylon? *boak*)

Struggling with eye contact until I was in my 30s.

Having too much empathy.

Being constantly bullied as a child and teenager.

Not being able relate to most other girls.

People calling me weird including the local pisshead and it must be bad when the local swiller tells you you’re weird.

Shutting down when overwhelmed. (selective mutism)

Escapism being VITAL to my mental well-being.

Soaking up people’s moods up like a sponge. (You’re having a shit day? Then so am I)

My body reacting in the same way no matter how many times I do something.

Why I am obsessive in thoughts and interests.

Why my ‘imaginative’ play only ever involved imitating what I’d seen on TV programmes or films.

My mood going from euphoria to despair and everything in-between in any 24 period.

Having to observe and copy in order to fit in.

Why I have picked at my skin so much that I have scars.

Always feeling a sense of unease. (WE’RE DOOMED!)

Always feeling the odd one out.

Catastrophic thoughts about everything.

Questioning why I am here.

ALWAYS feeling that I was not meant for this world..

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Moi.

You get the picture?

So I had resigned myself to being a weird sod. One of life’s oddities. A misfit.

Then we took The Boy to be assessed for autism and from the questions they were asking I knew then that I was autistic.

LIGHT BULB MOMENT!

For almost four years I debated whether I needed a formal diagnosis. Many people are content to just know that they are autistic and trust me, most people know. For me, it wasn’t that simple because some of my issues have become worse as I’ve got older and one of my fears is being thrown into an old persons home where I would die within a day because of the social aspect.

Also, I needed validation.

So last year I was assessed and in February this year I was formally diagnosed as autistic and the relief is immeasurable. I’m not weird. It’s just that I perceive the world differently.

Last year I went to the autism show in Manchester and it was while I was there that I came across Peter Street. Peter is a national and international poet and was diagnosed late in life as autistic. Peter was one of the speakers on the day and spoke of his experiences at school and his diagnosis. Hearing his story helped me to make the decision to go for assessment because I could see how much it had helped him and he was older than me when he was diagnosed so I knew it wasn’t to late for me. So, thank you Peter.

Peter also passed round a poem which was written for everybody on the spectrum. I have this on my kitchen wall and read it every day..

Not Being Me by Peter Street

Childhood nights were dreams
of being a sheep
then up and out of a morning,
a quick check to see

if by any chance in the night
there had been a change
of being just like all my friends
and not the odd one out

like afternoon dance lessons
spent hidden
in the toilet
out the way because

I couldn’t dance the sheep steps
that’s why I dreamed
of being a sheep
so I could be like everyone else

I listened to this poem and cried because I understood EVERY word of it. How many times as a child had I prayed that I would wake up and be like everyone else? However, I wasn’t like everybody else and now I know why. All these years I’ve been fighting against my own brain so is it any wonder I feel so tired now?

So, as Mozzer from Manchester once said…what difference does it make?

Well, it just means that I have a formal explanation for why I struggle so much and hopefully I can get some support as I get older because I really am scared of having to live in Shady Pines and having to play bingo and shit. I would rather choke myself to death on my own false teeth!

I’m still me. It’s just that my reality differs from yours. That and I touch plugs waaaaay more than is healthy, y’know?

So there you are..

I’ve outed myself as the autistic human I am and have always been.

Thank you for reading.

Not Being Me poem used with kind permission from Peter Street.

Peter’s website

Listening To The Dark ~ A Selection Of Poetry ~ Peter Street

Images via Creative Commons

Spectrum Sunday

Autism – Life After Diagnosis

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The BBC is currently running a series called The A Word which is based around a little boy who has autism and his family’s struggle to come to terms with it. So far, his mother has struggled to come to terms with the diagnosis and while I can understand why some parents might feel like that – it wasn’t my experience..

Autism was suggested as a reason for his behaviour when he was 3 years old but prior to that we hadn’t considered it as an option. I knew very little about autism so I researched it and soon realised that he ticked all the boxes. One year later he was diagnosed.

The formal diagnosis came via a phone call. The pediatrician had told us unofficially that our son was autistic but she needed the full report before she could make it official and she was waiting on the speech therapist who hadn’t yet seen him in clinic. A change of plan on the day of his speech therapy appointment threw The Boy into a major meltdown to the point where the therapist was unable to work with him. As distressing as the meltdown was – we were quietly pleased that this would be going in her report. A few days later later the consultant phoned and gave us the official diagnosis of Autism Spectrum Disorder with Sensory Processing Disorder.

How did we feel?

Relief, mainly. We had concerns for the future, but what parent doesn’t? Before that I was more worried about him not receiving the diagnosis or having to wait because that meant he wouldn’t get the full support that he needed.

Having read a lot of blogs from autism parents it’s clear that we’ve been lucky. We’ve had no problems at all in getting an assessment, diagnosis and subsequently the right support. I know that many parents are not so lucky but each of us can only speak of our own experience as we find it.

Why Go For A Diagnosis?

Some people live their entire lives knowing they are autistic but never getting assessed formally. When you look at the figures for the amount of people in the UK who have autism, I would suggest that the actual figure is much higher. For some people, they know and it’s enough.

Early intervention makes a massive difference. The Boy copes in mainstream school with one to one support. Without it life would be very different. When I was a child, Leo Kanner’s narrow opinion of autism still influenced attitudes and my son would have been labelled a troublemaker and most likely expelled.

A diagnosis can:

  • Provide relief to the person and their family.
  • Allow access to services only available with a diagnosis.
  • Give better understanding of how to cope with any problems.
  • Provide access to financial support.

How To Get a Referral

Our journey was different to a lot of families as our son’s nursery manager approached us with the suggestion of autism. The child psychologist observed him at nursery and agreed that he should be assessed whereas most parents start with their GP. The one thing I would urge all parents to do is to document unusual behaviour when it happens and note what was happening prior to it.

If you suspect your child has autism:

  • Make an appointment with your GP. Prepare notes on what you want to say in order to get the most out of your ten minutes. If you feel you require a longer appointment, request one.
  • Keep a diary to log unusual behaviour.
  • Not all GPs understand autism. If you are not satisfied, ask to see another one. Trust your instinct!

Diagnosis and its Effect on the Family

Every parent/family reacts differently to diagnosis. For some it brings a sense of relief, for others they grieve for what they feel they have lost. It’s important to understand that your child is still the child that you’ve always loved. The only difference is now you understand that they have a condition and it’s down to you, with support, to ensure that they reach their potential in order to live their life to the fullest.

Siblings

Caring for an autistic child can be all consuming but you need to make time for your other children. Remember that autism affects the family as a whole.

Looking After Yourself

Caring for an autistic child can be mentally if not physically exhausting. It’s important to take time out for yourself in order to re-charge the batteries. Don’t be afraid to ask for support and accept it when it’s offered.

Talk

The one thing that’s kept me from going completely doolally is being able to talk about how I feel with other autism parents and sympathetic friends. Being able to talk (or type) things out can make all the difference in those low moments that we all experience. I’ve also phoned the NAS helpline a few times and they have been helpful and informative.

The helpline number is 0808 800 4104

Autism doesn’t begin with a diagnosis. It’s been there from the start and it will be there in the end but the right support can make all the difference. The difference in The Boy after three years of support is nothing short of amazing. He is loved and accepted for who he is because he goes to a wonderful school with people who care. More importantly, he is happy.

I gave some thought to potentially burdening him with a label but the benefits of diagnosis outweighed the negatives, especially with him being so young. Hopefully when he comes to leave school in twelve years time- having autism will no longer be an obstacle to employment thanks to programmes like Employable Me which highlighted how valuable an autistic person can be to the workplace when given a chance.

Ours is a relatively positive story but it’s not the case for everyone. There are some children whose autism is so severe that there is little hope of an independent life and that must be absolutely devastating for their parents to cope with. It certainly puts things in perspective for us. Life can be difficult but we know it could be a lot worse..

Life with an autistic child is an emotional roller coaster or at least that’s how I see it. There are highs and lows in every day. Sadness and joy. Hope and despair. Resignation and determination. Courage and fear.

But always there is love.

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