Fibromyalgia and the Heatwave

Just in case you hadn’t noticed, we are in the middle of a heatwave.

It’s not even 11 am and it’s 21 degrees! That’s, like, CRAZY! Well, it is for England, anyway.

People are walking around semi-naked (not always a good thing) and if I see one more f**king fly, I will scream!

‘Bastard’. Also Known as the Common House Fly.

Every year (around this time) we get a maggot infestation in the bins, because no matter how fast I am in putting our rotting food into the compost bin, those bastards are quicker. They are Ninja fast and reproduce just as quickly. Our bin becomes a maggot utopia. That is, until I theatrically snap on the rubber gloves and introduce the maggot-massive to my friend, Dom Estos!

Anyway, enough about flies.

Are you still there?

Have you gone to vomit, or check your bins?

Back to the weather..

Heatwaves make me feel shit. This is because my body can no longer regulate temperature. Have I mentioned that my body hates me?

For healthy people – hot weather equals sunbathing, fun, eating charcoaled sausages, collapsing chairs, sunbathing and copious amounts of alcohol.

For me, it’s migraines, sinusitis, brain fog, palpitations, fatigue and IBS.

Not exactly Club Tropicana, is it?

The magic temperature that suits me is ‘mild’. Whenever I hear the weatherperson say ‘mild’, I want to kiss the TV/radio/whatever. On hearing the words, ‘cold front’ or ‘heatwave’, I take myself off into my room and adopt the fetal position.

Please, don’t start me on rain!

There’s no scientific proof that weather affects fibromyalgia, but those who suffer with the condition will verify that their bodies are like barometers when it comes to the weather.

Slight diversion: We had a barometer when I was a little girl back in the 1970s – it was a reindeer with the barometer bit where it’s chest should have been.

I’ll let you into a little secret: I was worried that Father Christmas was missing a reindeer!

Or was this what happened to them when they got too old to fly?

Worse, I had to say goodnight to ‘Rudolph’ every night as I passed him on my way up to bed!

‘N’ night decapitated Rudolph with the glassy staring eyes. Please don’t kill me in my sleep!’.

Childhood trauma aside, I was fascinated how the dial swung from rain to fair etc. These days, I don’t need any atmospheric pressure measuring instrument (antlered or not) to let me know when the weather is going to change because my body tells me when the weather is going to be bad. Or good.

Mine has three weather terms: Good. Changeable. Shite.

Thanks to the heatwave my barometer is firmly in the shite zone. I feel ill. I’m miserable. Even the dog is giving me a wide-birth! Mind you, she’s fairly miserable herself. She just lies about on the floor looking pathetic, not that I blame her.

However, that cool kitchen floor sure looks inviting, no?

Anyway, here are some gratuitous tips of how not to die in the heatwave.

  • Stay indoors. (obvs)
  • Fill your home with fans. (log onto Argos and buy their entire stock)
  • Drink water. LOTS of water. (Dehydration will make you feel even crapper than you already do) (Fact)
  • Stand under a pleasantly cool (not cold) shower and refuse to move. (until someone needs a poo)
  • Do your outside activities in the morning or evening.
  • Live on salads.
  • Keep your clothing lightweight and floaty.
  • Go bra-less if you’re confident you won’t fall over your own nipples.
  • Go commando. (Women suffering from post-menopausal ‘drip’ might want to skip this one)
  • Find a nice north facing room and live in it until the weather breaks.
  • Borrow the washing-up bowl. Fill it with cool (not cold) water and stick your feet in it.
  • Lie down on the cool kitchen floor (with or without the dog) If you have an old one like mine (dog, not floor) leave plenty of space between you as geriatric dog breath could put you into a coma – leading to possible death and you’ll decompose a hell of a lot faster in this heat! (think of the smell!)
  • If all else fails, lie on the floor in your undies.

If you’re suffering in this heat, I wearily raise my fist to you in a show of sweaty solidarity.

If you saw a heat wave, would you wave back? ~ Steven Wright

Fibromyalgia and Guilt

It’s a few weeks since I got my fibromyalgia diagnosis and I’m struggling to adjust to being fibromyalgic. Is that’s even a thing? WordPress thinks not. It wants to correct it to ‘fibrillation’.

I’m struggling to adjust with the limitations. Of fibromyalgia, that is, not fibrillation.

I’m also struggling with guilt.

One problem is that people can’t see pain. They see the effects of my pain, which may come across as me being miserable. Or they might notice that I’m having a lot of sofa time. I don’t ‘look’ ill (not with make-up on, anyway) so I must be lazy?

Anyone who knows me in RL will no that this is not the case.

I know that having this condition isn’t my fault. I’ve always struggled with anxiety, therefore it was inevitable that one day there would be one trauma too many and the proverbial shit would hit the fan. I’m now wondering if the ‘nervous breakdown’ I had last year was in fact a severe fibromyagia flare up and the fear of what was wrong with me contributed to the severity of the symptoms? At the time, I told my GP that I felt something physical was driving the anxiety and not the other way around. It also explains why I couldn’t tolerate any medication because fibromyalgia can make you sensitive (or intolerant) to drugs, even simple painkillers.

The way I look at it is that I have three things to cope with: Pain, fatigue and guilt.

I get that it’s not my fault and yet, I feel guilty.

I feel guilty for having to rely on others.

I feel guilty about cancelling on people, not that I get out much.

I feel guilty about the stuff that gets postponed until I have a good day.

I feel guilty about being a miserable git because I’m in pain.

I feel guilty that I constantly complain about the pain from a condition that won’t kill me.

I worry that people won’t take my pain seriously.

This was one day last week.

Situation: Shopping.

I woke up after a good night’s insomnia. I scanned my body for pain levels. It was a 2. So I decided to go and grace the supermarket with my presence, instead of doing it online.

I sat in a well known coffee establishment and drank my decaf cappuccino (with coconut milk) feeling quite positive with life. Maybe, just maybe, today was going to be a good day?

At that point, the universe farted in my face.

My body protested the second I walked out into the humid car-park. It protested even further when I walked into the refrigerated section of the supermarket. This is because I can no longer handle sudden changes in temperature. My neck/ shoulder pain kicked in. However, the token was already in the trolley, so I pushed on – literally!

Pushing trollies these days feels like I am pushing a car, especially if I get one with a wonky wheel – which I inevitably do. Turning those corners with my dodgy neck and a set of four wheels that want to go the other way is an absolute joy. NOT.

Then, there’s the checkout experience..

On this occasion, I was in a supermarket where the checkout operators are trained to rapid-fire your goods at you at finger-breaking speed. You know the one where your fingers are in danger of being trapped between a can of sardines and a two-man tent? You see people limbering up as they queue, or power-lunging by the cat food. It’s more of a cardiovascular workout, than shopping. Also, there’s no help with packing here. If you’re slow (like me) you risk angering the fifty or so people behind you. However, it’s cheap, so you learn to ignore the glares and fists being slammed repeatedly into bags of frozen peas.

Heading back out of the chilly supermarket into the stifling heat of the car-park, I felt what little energy I had drain away from me. My battery went from 30% straight to PLUG ME THE HELL IN I’M ABOUT TO DIE!!!

I needed some energy, but I can’t ingest sugary things because my body is a bastard, so I had to make do with Linkin Park on full-volume.

What track did my my car ‘randomly’ chose to play?

I’ve Given Up.

The screamed lyrics, ‘Put me out of my fucking misery’ certainly raised a few eyebrows as I cruised past a well known bargain store (flogs 100 tea-lights for 99p) but I didn’t care because I needed the adrenaline blast to get myself home safely.

Anyhoo, by the time I got home and had taken my shopping bags inside the house – my muscles were basically on fire and it was all I could do NOT to slump onto the sofa there and then, but the ice-cream point-blank refused to put itself into the freezer – so I pushed on through the fatigue and pain.

Some days I wake up feeling crap. My pain levels are up or I have brain-fog and actual shopping is a no-no. Virtual shopping is a big enough ask on days like these. On other days I wake up feeling OK, but the pain kicks in when I’m out. Fibromyalgia’s be tricky that way. Hence, this particular situation.

Once I’d put my shopping away, I saw that my basket of washing needed pegging out and as soon as the ‘sod it’ thought entered my head, the ghost of my mother-in-law appeared (not really) saying, ‘It’s too good a day not to get that washing out, girl’ so I pushed on some more, promising myself faithfully that I would rest afterwards.

As soon as I stepped outside into my ‘sun-trap’ backyard, my head started to throb and my body ached as if I had the flu, but, still I refused to give in. Why? Because I’m an idiot!

I was only pegging some washing out. It wasn’t as if I was doing hardcore housework, but with each action of raising my arms, I felt as weak as a kitten – only less cute. I snapped a few pegs (that’ll teach me to buy cheap crap) and fought the urge to launch the peg-bag over the fence. Not that it would have gone very far. No strength, see?

My body was saying, ‘Oi. Oi. Oi. Moron. Step away from the classy rotary airier. YOU NEED TO REST!’, but my brain ignored it because it’s a stubborn tw@t and there was no way it was going to let a basket of washing defeat me! So, with a peg between my teeth, I soldiered on.

Having completed the task, I collapsed onto the sofa. I remained horizontal until I regained enough energy to prepare tea, which was three hours later. Alas, the migraine which had been threatening since the supermarket finally got the better of me and by 6pm I was in bed with ‘Coco’ and ‘Coolio’. That’s Co-codamol and Cool Strips, to you!

This was one day and by no means the worst. I just wanted to demonstrate how something menial, like shopping, can be such a pain in the arse – or whatever part of my anatomy my fibro happens to be manifesting itself in at the time.

The symptoms change, but pain and fatigue are constant.

The thing that bothers me the most is those hours when I am lying on the sofa. It bothers me that I can’t do what I want to do, when I want to do it. Or, sometimes, not at all. It drives the control freak in me up the wall! Then, because I feel guilty (and frustrated) I overdo things as soon as I regain some energy and find myself in this cycle of exhaustion, pain and guilt.

A little research shows me that the guilt trip isn’t uncommon with fibromyalgia sufferers, so I know that people will understand this post. I want them to tell me that the guilt doesn’t last forever. Or maybe that the guilt will push me when I need to be pushed because depression is getting the better of me? FWIW. I really don’t like crying. It makes me look like a psychotic panda. For this reason alone, I should have my tear-ducts removed.

I feel guilty for writing this post because there are people a lot worse off than myself. There is no termination point. I can walk. I can function, of sorts. This won’t kill me, but knowing I won’t die from this doesn’t lessen my pain. Or the exhaustion. Or even stop me whinging. It just makes me feel even more guilty than I already do.

To end this post, I will leave you with one of the oldest cliches in the book, but also one of the truest. Print it off. Stick it on your fridge, cupboard or forehead and absorb it’s message.

Appreciate your health: It’s a gift that’s not appreciated until it’s gone.

All images via Creative Commons

 

 

Supermarket Weep

I went shopping the other day – nothing unusual with that.

It’s half-term, so I took my son with me – nothing unusual with that either.

However, something happened at the supermarket check-out that ROCKED MY WORLD!

But first, some history..

The first time I realised I could be ‘getting on a bit’ was during my third pregnancy when I stole a look at my hospital maternity notes and saw the term “elderly primigravida”.

Elderly? I was only thirty-eight! Then again, the average age of mothers where we lived at the time was about 16 and I defy any thirty-something mother-to-be to sit in a waiting room full of girls fresh out of their school uniforms and not feel ancient.

Having The Boy took it’s toll on my health, so much so that my brain communicated the message to my ovaries that my breeding days were over and I entered, was catapulted into the menopause at 39 years of age.  Bummer, huh?

The problem is that my mind still thinks it’s 17 (the age I was when I had my first son) which would explain my HORROR when the young (male) cashier at the local supermarket rocked my world with this question.

‘Is your grandson helping you to pack?’

Grandson?

It would have been more tolerable if my son was a baby or a toddler, but he’s almost as tall as me with size 4 feet, not that the operator could see his feet from where he was sitting. But you get my drift?

I stared at the young man.

Stared? Are you sure you’re autistic?

Look, my eye-contact is questionable at best, but when sufficiently antagonised, I can out-stare a statue, mate.

After what seemed like hours, I blurted out: ‘HE’S MY SON!

‘Oh my God. Sorry! Er, anyways, you don’t look old old enough to be a grandma etc.’

Put the shovel down, mate. Stop digging. The damage is done. You mistook my 9 (looks more like 11) year old son for my GRANDSON! You PRESUMED it must be the case. Do not address me again. Scan my goods. Take my payment and allow me to exit the supermarket with what remains of my self-esteem.

He never uttered another word.

There was this awkward atmosphere with me aggressively shoving my fruit and veg into bags for life and him fast-tracking my goods through the scanner as fast as was humanely possible. That done, I practically chucked my clubcard at him. I may have been in a hurry to get the hell out of there, but I still wanted my points!

Five minutes later, I was sat in the car – sulking.

“Are you OK Mum?” The Boy asked me.

I don’t know what gave it away that I wasn’t OK. Maybe it was the way my knuckles gripped the steering wheel despite the fact we were stationary?

I said I was fine.

I wasn’t fine.

I really wasn’t.

I (who usually can see the funny side in most things) wasn’t fucking fine.

What I couldn’t work out was WHY it was bothering me so much? I didn’t even have the ‘time of the month’ as an excuse because I’ve not had a period since 2011!

This was the sort of thing my mother would have reacted badly to. She’d have given the young man (see, even that makes me sound like an old codger!) an earful then flounced home to slam some doors. Then again, this was the woman who in her late 60s decided to drop the ‘nan’ bit and sign her grandchildren’s cards with her name. A few years earlier, short-arse rock God, Prince, had ditched the ‘Prince’ bit for a squiggle and became ‘the artist formerly known as Prince’. So, this was how my mother came to be known as ‘the artist formerly known as Nan’.

Was I becoming Gerascophobic like my mother? *

After a day of sulking, I concluded that, yes, the comment had touched a nerve because I physically feel much older than my years due to illness and early menopause. It’s yet another reminder that my youthfulness has fucked off (taking my oestrogen and collagen with it) and will NEVER return.

I guess the problem is that I’ve been used to being the youngest in everything: The youngest child. The baby sister. The youngest in the class. The youngest wife. The youngest mum.

I wonder if it’s any coincidence that this ‘incident’ happened during my silver-hair transition? I have about six inches of silver hair now, but ffs, was it really the artificially coloured hair which made the difference? Not that I am going to slap the dye back on anytime soon  as the lure of cheaper hair-dos takes priority over being mistaken for my son’s grandmother.

Even so. *twitch*

At the end of the day, it’s not a big deal at all. Or it shouldn’t be. There are certainly bigger things in the world to worry about, right? I also understand how lucky I am to have a child full stop etc etc so no need to go there.

Bottom line? The first time somebody mistakes you for your child’s grandparent instead of mother? That’s a psychological kick in the flaps, whether you admit to it or not.

So, my flaps having been metaphorically and psychologically kicked, I uphold my right to sulk profusely.

I may be some time.

*(Gerascophobia is an abnormal or incessant fear of growing older or ageing)

 

 

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, eh?

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.