Over the Christmas period and more recently, because of the freezing cold weather, my chronic pain (Fibromyalgia) and chronic fatigue (CFS) were off the charts. I struggled SO badly and it really, really affected me physically as well as mentally. In order for me to preserve any energy/sanity, I kept myself to myself for a lot of the time. I had to leave my brother's house on Christmas Day to crawl into bed as the pain was so bad. I had to spend Boxing Day by myself instead of going to Winter Wonderland with my family and I spent the days after Christmas up until New Year's Eve, on my own.
Who else hides themselves away when their chronic pain or mental health is in pieces? I find that when it's all too much for me; I recoil and shut myself in. The reasons for me doing this are varied, but mostly it's so that I feel less of a burden on those I'm with. I get fed up of lying and saying I'm fine when really I'm not. It is easier not having to explain myself/my pain. I know if family members or friends were to read this they would tell me not to be so silly, BUT it's something you have to battle with when you have chronic pain or a disability and no one can take those sorts of feelings away sadly.
Whilst I was on my own and lying in bed I made a list. I compiled a list of just some of the thoughts I have about living with chronic pain. This is a list of what I personally feel chronic pain does to me. It's a list of what chronic pain does to my brain as well as my body.
I try my hardest to not let my chronic pain define me BUT it's damn hard. It's not all doom and gloom, I generally have a fantastic life with friends and family who love me but...
For me, this is what living with chronic pain is like...
Procrastinating and putting off things. AKA posting this post that I wrote back in January!
Apologising/forgiving, even when you know you're not in the wrong because being in an argument for any longer; will just cause you too much anxiety & even more pain.
Being sick of your own thoughts.
There is so much I could say about how I cope with my chronic pain, but I think I will leave that for another more comprehensive post. Would this be of interest to any of you? I could write about my Fibromyalgia diagnosis, treatments I have had, drugs I have tried, how I cope mentally/physically etc...Procrastinating and putting off things. AKA posting this post that I wrote back in January!
Spending the festive period on your own because sometimes, even being surrounded by people who love you; can be too much.
Having a kettle by your bed so that you don't have to go down 3 flights of stairs to make a hot water bottle.
Grieving for the life you once had, before you were constantly in pain.
Cancelling date after date because you fear they'll run a mile once they find out you're in agony, every day.
Feeling like you let EVERYONE down, all the time.
Postponing and cancelling on people until they stop asking.
Lying in bed, supposedly the most comfortable place on Earth and it might as well be a bed of nails.
Wondering if your friends are sick of you being the "special" one. The one who needs the comfy bed when you go away, the one who can't attend 50% of your get-togethers.
When you know a hot bath or shower would help relieve your pain, but getting up, undressing & turning the taps on/off is too much.
Feeling like you're triple the age you really are.
Being surrounded by piles of washing because doing the laundry is far too much.
Wondering if you'll go to the toilet on yourself because you can't get to the toilet quick enough.
Feeling like no one will ever want to be with you.
Spending days and days in loungewear.
Being jealous of your peers and how much they achieve daily, weekly, monthly.
Feeling like you're a let down to your family because all you do is complain and whine to them.
Being in so much pain, you stutter because you can't get your words out properly.
Not doing your hair because you can't face lifting your arms for that long.
Wondering if you'll ever have a day when you wake & your first thought isn't pain.
Cancelling something you have wanted to do for weeks.
Feeling like you hate everyone, even the people you love.
Watching one channel on television for hours on end because the remote control is too far out of reach.
Being unable to carry your own suitcase
Leaving your DSLR camera at home every day because it's too heavy for you to carry.
Ordering uber eats 3X a day because you can't face cooking/preparing anything.
Taking taxis everywhere you go because travelling by public transport/walking is too much.
Being skint because all you do is take taxis & order take away food.
Having scars on your back, stomach and legs from years and years of hot water bottle burns.
Wondering every week if your management is going to let you go because you're always sick & you're not achieving enough.
Having no space in your brain for anything else other than pain.
Not being able to screw the cap off some medicine, because you have no grip.
Taking a hot water bottle abroad even though it's 30degrees +.
Planning out every single journey so that you know every single minute detail.
Turning down travel opportunities because the thought of the travel/flight is too much.
Worrying so much about all of these things, that it gives you IBS for over 9 years.
Thinking everyone just thinks you're lazy.
Pretending you're ok when really you'd prefer to not be alive.
Lying awake, even when you are shattered but your central nervous system is so hyped; it won't let you go to sleep.
Being in so much pain, you throw up.
Wanting to achieve everything & feeling like you achieve nothing.
Looking at your friend's lives and being so jealous you wish something shit would happen to them, just for once.
Knowing you'll probably never have kids because even babysitting relatives for a few hours, leaves you in agony.
Keeping all of this to yourself because it's easier than telling someone.
Having no short-term memory because your brain is occupied by pain signals.
Having no sex drive because all of the above, just isn't very sexy now, is it?
Having a high sex drive but even just lying down in bed hurts.
Telling everyone you're "fine" when really, you're far from it.
Losing countless friends because you can't keep up with them all & they expect too much of you; so it's easier just to let the relationship slide.
Not texting anyone back because then you have to face up to why you've been ignoring their texts.
Wondering what it feels like to have a pain free hug from someone.
Wanting to exercise but being unable to.
Sitting on the tube because you're in agony but giving your seat up because no one can see you're in pain & you're worried about looking unkind/unsympathetic to somebody else in need.
Using a hot water bottle minus the fabric cover because the burning sensation/pain distracts you from your chronic pain.
Being in such a good mood, you want to cry because you know this feeling isn't going to last.
How I cope
As I mentioned above, there are good days. There are days where the pain is manageable and I don't let it control me. It's very, very hard though. It is something that I am still trying to get to grips with and I do wonder if things will ever get better.
Lots of people private message me about how I cope with my Fibromyalgia and the one thing I constantly say is - pace yourself. You need to realise what your limitations are and what it is that will trigger your symptoms. For me, I know that stress, cold weather, travelling and walking/standing for a long time & dancing on a night out are my worst triggers - there are tonnes more, however. I then make sure that I plan as much as I can if I know I am going to do any of those things. I try to alleviate the stress of situations where possible by thinking about how every stage will affect me. If I am travelling for instance - I plan my journey, I pre-order my cabs, I take a pillow/hot water bottle with me and I make sure I carry as little as possible... the list goes on.
~ Seize the day ~
When I am having one of my good days - I really have to make the most of it. I have to seize the day! Shooting content with my photographer is an example of this. I have been struggling for a good few weeks since London Fashion Week and have been wanting to shoot these denim jeggings from Matalan since receiving them back in February! Sadly it's taken longer than I wanted - but I just had to listen to my body and wait it out. Finally, I felt strong enough last week, slugged through the snow and shot this snuggling, comfy, classic outfit.
Some days I like to dress in a striking, edgy way and some days I like to be comfortable, timeless and relatable. Denim and a Breton jumper is the perfect combination for that 'done but not too done' look, in my opinion.
Shop Matalan Denim here.
Shop My Look
1. *Denim Jeggings | 2. Jumper - Zara similar here and here | 3. Coat | 4. Trainers | 6. Bag - ZARA sold out.
Please comment below or message me on socials if this sort of post would be of interest.
*This post was written in collaboration with Matalan
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