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

 

 

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.