Eccentric, tea drinking, stationary addicted cat lady. Living with multiple chronic illnesses and a multipack of crisps, you'll most likely find me with a cup of tea, a new notebook and my kitty cat. Or in a hedge taking photos of wildlife. So grab a cup of tea with me, sit down and get stuck in.
I’ve suffered from fibromyalgia (fibro) for almost four years now – you can read my pain story here. For those of you who read my blog and are less familiar with the condition I thought I’d do a little write up about it for you here, and explain the symptoms I experience. All symptoms are unique to every sufferer, and as there is such a vast range of them, it’d be impossible for me to list them all here without me having to recover in bed for the next ten days. So, here we go;
The main symptom associated with fibro is widespread pain, quickly followed up by fatigue.
The pain is all over the body, worse in some areas, and can be burning, throbbing, stabbing or a deep ache. Pain can worsen and ease depending on stress levels, exertion, weather changes and your health.
Fatigue is not like being tired. It’s that feeling you get when you’re coming down with flu and you need to get to bed immediately. But unfortunately sleep rarely relieves the fatigue and sufferers can be be left exhausted for days/weeks on end in addition to regular day to day exhaustion caused by the condition.
Non-restorative sleep – the name says it all. You could sleep for 12 hours (unlikely as a fibro girl/guy) and not feel better. But sleep is usually very broken making the situation a whole lot worse.
Post exertional malaise – think you’ll be ok after that half hour trip to the local shop? You will be, in about 3 days time.
Hypoalgesia or extreme sensitivity to pain. It might hurt a little to you, but it hurts a lot to us, A LOT!
Allodynia – Something a little as a light touch can be painful, and the touch of clothes unbearable on bad days. I personally can’t scratch my arms or legs without being in complete agony.
Sensitivities to environmental factors such as pollution, cigarette smoke (makes me sneeze uncontrollably at times), foods, sounds (lowest setting on the TV for me, and a nightclub is out of the question) and bright lights (always keep a lamp and low wattage bulbs handy).
Stiffness – often called morning stiffness but it’s not, just like morning sickness is not just the morning. You sit still for more than 10 minutes and your body appears to lock into place. This accounts for my jaw as well. And that is my excuse for being so very chatty!
Muscle spasms – sometimes caused by stiffness, often just inflicted by the mean guy that is fibro.
Cognitive issues/fibro fog/brain fog. I personally don’t like the term fibro fog, not sure why, I’m assuming it’s because I forget I actually do like it! Poor memory, forgetting what you’re talking about, getting words mixed up and talking in riddles, slow confused speech and concentration issues are all part and parcel of fibro.
Headaches, lots of lovely headaches. Sometimes caused by pain or jaw locking, sometimes caused by exhaustion, sometimes by medication, sometimes just because fibro is cruel.
IBS – cramping, bloating, constipation, diarrhoea, – you get the picture. Not fun when you’re already in pain and can barely stand up.
Mobility problems – pain and exhaustion can make walking difficult. Going for a run is out of the question, in fact don’t even think about that one! Lots of us have to resort to walking sticks and wheelchairs, myself included.
Dizziness, ah dizziness, how I hate you, especially half way through a Monday morning at my desk. And when I wake up. And waking with it during the night, eugh.
Restless legs. Feel like you can run a marathon? You really can’t, but your legs are giving it their best shot.
Tinging, pins & needles in hands and feet, also know as paraesthesia
If you weren’t in enough pain already, your period pain is about to gt a whole lot worse. Unless you’re a guy, then it’s probably just good ol’ IBS again.
Anxiety and depression – it’s hard not be anxious and beaten down when faced with all of the above, so do bear with us and be kind if it’s a particularly bad day.
Allergies – over the years I’ve become more allergic to an increasingly long list. I developed an allergy to my cat, now I can’t even spray perfume without a marathon sneezing fit. I’ve actually scared people off on the bus. Great for getting your own seat (focusing on the positives here).
I’m really quite sure I’ve missed a number of things off this list so do let me know if you spot anything that needs adding. But I think I’ve reeled off at least all of the symptoms that affect me.
Hope this post was informative to those of you that don’t know all too much about fibro.
As always, I love hearing from you so feel free to comment or get in touch.
I’m obsessed with Glossybox, Birchbox and Glamour beauty boxes. I’m also in the process of spending more time on ‘me’ as fibro depleted me of enough energy to pamper myself like I used to. But I’m changing that and making sure I save some energy for me-time, and I’m learning how to transform my fatigued self into something far more presentable to the outside world.
As I’m sure many of you are aware I am the reluctantly proud owner of a walking stick named Little Johnny by a good friend of mine. For those of you who are not aware of the story, to put it simply, we have a love/hate relationship. Johnny spent about six months in the corner gathering dust, until one day I was frogmarched home by my friend to get him and take him for a walk. To be honest, this made me hate him a little bit more, especially when colleagues at my then job saw me struggling to cope with him on a bus. But I knew I had to persevere, my health wasn’t improving, so it was this or walk around looking like I’d had some terrible sort of accident in the toilet department or get overtaken by elderly ladies with shopping trollies (this actually happened).
I refer to the stick as ‘him’ as it makes it easier to deal with. My friend refers to his cane as Michael (Caine) as he needed help coping with using it at first, then it just became Michael, and Johnny just became Johnny. Also, I give everything a name, my cars were called Nigel and Matilda and were referred to as such, and not as ‘my car’. I realise this is not normal in many people’s eyes but where’s the fun in being ‘normal’?!
Here’s a typical day with Johnny:
Get ready to leave house, wonder should I take Johnny.
To and fro a little, pick him up, put him down, fold him into a bag, get him back out.
Leave house with Johnny, try to work out which side needs most support – hang on, why are those people looking at me, oh wait they’re not.
Get to bus stop, get groaned at by person wanting to sit on seat. But I’m taking up the last space. Get stared at a little.
Get on bus – people either flee if I sit next to them, which is odd, or a lady 70+ tells me off as I don’t look disabled and I’m sitting in ‘her’ seat.
Get off bus, people huff and puff as I take my time.
Walk for a bit, put Johnny away, it’s too stressful. But wait, I really hurt. What shall I do?!
You get the idea…
Anyway, back to Johnny. We’ve slowly been taking more trips together and he’s been out to meet my friends (one of whom tried to steal him, yes that’s you Lord Stu!) and life with him has been getting slightly easier. There are even times when I feel at a loss without him. I’ve been taking him out voluntarily and not after being told to do so by a close friend or my wife. There is a situation or two where I do get nasty things said to me about having him but I’m doing my best to take it in my stride. We also often get looked at and glared at by elderly people. For example, on my way to work today I needed a seat at the front of the bus, my hips were not my friend, and an elderly gentleman as taking up a seat with his bag and I didn’t feel comfortable asking him to move it while he just glared at me, so I sat behind him instead. But the thing is those seats say for ‘those less able to stand’ and today, like most days, that was me.
I get angry at myself for not standing my ground, saying something to the person with the bag that’s got the window seat, or to the people who laugh at me. But here’s what I really want to say:
Don’t laugh at me because I’m 29 and using a stick, do you think I want to be this way? No of course I don’t, but if it enables me a little more freedom, independence, and the ability to get to work in the mornings then I can and will use one. And no, it’s not pretty, pink and flowery to get attention or create a talking point, it’s to make it a little easier to use. And anyway, pink is my favourite colour, not that it’s got anything to do with you. So stop staring at me, stop taking the mickey, and let me sit down on that flippin’ seat because my body is exhausted, sore and if you stare at me much more I may well cry.
Sadly, I realise that all of the people I want to say this to will never actually read this, but perhaps if I can write it down, I can take steps at building myself up to say it, just like the steps I took in taking Johnny out. It may have taken me a year, but I got there, and I will come back a stronger person from this.
To celebrate this occasion, I decided to get Johnny a friend, a kind of mail order bride if you will. She’s called Dotty, she’s shiny, and new, and a lot lighter than Johnny but doesn’t fold away in my bag (great when I’m too embarrassed). So, without further ado, meet Dotty:
Isn’t she pretty. I’m hoping it won’t be long before our first outing because I actually do want to show her off!
Do you use any walking aids or use a wheelchair? How do you feel about using them? Have things changed over time for you? I’d really love to hear from you all on his subject.