How to help family or friends understand fibromyalgia
Try to imagine yourself in the same situation as the family member or friend who asked you to read this article. Think about everything they have told you so far about how their daily life is as a fibromyalgia sufferer. Now we want you to try and think about how you’re daily life would be affected if you had all the same pain, fatigue, stiffness, etc. We are wanting you to try to experience what it would be like to switch places.
Physically Doing Things
Imagine having to make a to-do list and only being able to get to complete up to four of the things on that list, but imagine doing this daily, which changes day in and day out as your body changes, the number of things that you can do at different times of the day, remember the more you do at a time will prevent you from reaching your goals for the next day, so you have to pace yourself, do not use all your energy in one go, as you will get so tired and have so much pain that you will not be able to move the next day. Imagine how frustrating and difficult it would be to not be able to do all the jobs on your list ever again.
Fatigue
Now try to imagine after you have put your body through what feels like a marathon doing the jobs on your list you decide to try rest. But you have so much pain it keeps you from resting, so imagine this for a second, staying awake for a few days without any sleep, having to operate the next day, feeling like you got run over by a truck if you were to walk you would be dragging your feet while still having that immense pain, and your legs could easily buckle and give out from underneath you. And when you try to sleep again and again you have the same thing happening, no matter what you do you can not fall asleep. You try to read, watch tv, listen to music and you will still not fall asleep. You can take sleeping tablets, it will make you more tired than you were before, you took them but they will still not help you to fall asleep or even stay asleep as the pain consumes you. And even when you eventually get a little sleep for 20-60 mins you wake up feeling more tired than we’re before you managed to sleep.
Electric Shock Through The Nervous System
The closest thing that I can compare this to is by accidentally sticking your finger into a wall socket, has that ever happened to you? If so then imagine that happening over and over, as this happens a lot of the time, when you have flare-ups this happens with every movement you make, it is excruciating even to the point where you feel like you want to cry, that is what happens to people having to live with this terrible disability. We regularly experience these electrical shocks, especially down the spine, knees, elbows, hands, and feet. The pain is so bad it stops you in your tracks, you wish for it to just go away but it doesn’t. At night it is so painful it rips you out of your sleep if you can sleep.
Expenses for Doctors and Tests
Now try to imagine how much fibromyalgia costs financially. It comes to the point where you go from doctor to doctor, tests after test, seeing physicians yet you still have no answers, you try everything to get relief from your symptoms, everywhere you go you get the same problem, you feel like you are running into a wall time and time again. Fibromyalgia is a mystery to all people of all medical fields as there isn’t one person that is the same, no one knows why this happens, imagine having to be told by most medical doctors that this illness isn’t real, (but in reality, it is because they do not know how to treat it) but you know for a fact that what you are feeling is real, and all you want is answers! Getting answers to what is going on with you is like building a house, it takes a long time, and the only way you can do that is by reaching out to the right medical help. Hopefully one day Drs and specialists will educate themselves so they can at least understand what fibromyalgia does to a sufferer.
Doing Physical Activities and Exercise
Ok, so let’s imagine that you have never climbed a mountain before, or you have never done a marathon of 25km, but you have been just asked to do one of these tasks now. But then you are told you are not allowed to practice and you are not allowed to warm up. Then you are told that you have to complete this task that has been given to you, how will you feel the next day? Your muscles and body will be so sore, doing something physical will drive you up the wall, hence the reason you do not feel like doing any activities, as your body will not physically allow it, this is how a fibromyalgia sufferer feels most of the time just getting out of bed, that feeling doesn’t go away, it stays with you the whole day, you hardly ever have a good day. And unlike most people without fibromyalgia, our muscles won’t heal in a few days and the pain will go. We never get to escape the pain.
Environmental Temperature Difficulties
In the colder month’s many fibromyalgia sufferers are affected by the cold weather and it doesn’t matter if they use heaters or blankets, they will never get warm no matter what they do, you will always feel cold till summertime hits, then the summer heat you feel like your melting even if you use a fan, you will feel ok but then get cold again, there is never a satisfactory temperature that suits your liking so try to imagine never been hot enough or never been cool enough and no matter what you do you can’t get your body temperature to settle day in and day out.
Unpredictability
Now we want you to imagine what it would feel like to not be able to plan for anything important to you. And not be able to plan a day out or a trip to do shopping. Basically having to live your life not being able to plan ahead ever again. With this invisible illness, everything is unpredictable, you never know when your symptoms are going to get worse, or if something is going to trigger it, having a fun day out is extremely hard to plan upfront, having to explain why you can’t do something is so frustrating, having to give excuses all the time isn’t nice or fun, it makes one feel bad, but fibromyalgia sufferer can’t help what is happening, it is out of their control and unfortunately not everyone understands, family and friends that don’t know this illness doesn’t understand, they just don’t get what you are going through, they don’t know to what extent this illness pushes you, they don’t know how you feel about how things can not happen when you want it to, and they don’t understand that you also want to do things but due to how unpredictable this whole situation can be you never know when or if you can do something with family and friends.
Isolation
Imagine having to stay at home, stay in bed days on end when you are at your worst, not being able to do anything, not being able to go anywhere feeling like you are stuck in a body that isn’t yours, wishing that you could just feel normal for once, wishing you could escape this jail that you find yourself forced to live in. Having to spend time by yourself without any means of interaction with other people, the only thing you have is your adorable pet, if you have one. Your pets during being isolated are your everything, if you don’t have one you’re left with your thoughts, the environment that you are in gets so isolated that you’re wishing someone will come by and make your day a little nicer, but you find out very quickly that doesn’t happen, that is the difficult part, that is where your pets make you feel a little better, and they don’t make you feel like your been judged, questioned or even told that it is all in your head, or worse of all that you’re faking it, but what they do is they make you feel like you’re not completely alone, it makes everything feel just a little bearable. But if you don’t have a pet then it’s as if you are the only one on this planet. You feel like you are all alone with no one that cares if you are even alive. It’s like you have been stranded on a deserted island with no one to help you.
Times That You Have No Choice But To Take Time Off Work or Cannot Work
We want you to imagine that you have fibromyalgia just like the loved one that has given you this to read. Let’s say that you get seriously sick about six-seven times a year. You have to call in sick for about three, four, or even 7 days every time, on really bad flare-ups it could be several weeks. You are going to get to the point where you wonder “do I even still have a job? The thing is with this invisible illness you never know when a flare-up is going to hit you, when a flare-up starts it’s immobilizing, that is why people appreciate the fact that they can work from home sometimes or permanently, cause you physically will not be able to sit at your desk the whole day, as no matter how you sit, stand or lay down, you are never comfortable. But a lot of us cannot work anymore due to how severe our fibromyalgia symptoms have become. Just imagine being told to get into a car with no petrol and a lawnmower engine under the hood to make it move. You’re going to say it will never move, aren’t you? Well, that’s how we feel most days as if we have no energy (petrol) and very little strength (lawnmower engine) and when this happens we can’t do anything but breathe and try to cope with the pain, fatigue, weakness, lack of strength, etc.
Memory Loss Also Known as Fibro Fog
We want you to imagine how you would feel if you started to forget things that were important like things that your supposed to do at work or home. It would start to get frustrating when you don’t even realize that you have forgotten something important. Well for someone living with fibromyalgia it’s even worse because they are going to forget things that they are supposed to do at work or at home, they are going to forget deadlines at work and home, they are going to forget where you have put things or what they were supposed to do, their meetings will never work out, as they will forget they need to be in a meeting. Fibromyalgia fog can cause confusion, headaches, migraines, and temporary hearing problems and nothing they do will help them to pull themselves together until it passes. Fibromyalgia fog is one of the most annoying symptoms of fibromyalgia. Especially when you put things where they shouldn’t be, like your phone in the fridge or even your keys in a cupboard without realizing you have put them there.
Then forgetting what you had planned that day, or which route you usually walk or drive home after using the same route for years. On really bad days fibromyalgia fog can cause you to wake up not knowing where you are or how you got there which is a terrifying situation to be in especially when you live on your own and your family or friends don’t check on you. With this invisible illness you have a lot of challenges to face each and every day, insane ones too, but you learn to be thankful for the small things, the beautiful things of a day, keeping a little notepad next to your bed or even sticky notes everywhere helps to an extent, but not completely, when you use that method you need to make thorough notes to help you to remember what you could forget. The problem is by the time you remember what you forgot it’s usually too late.
Please Remember
Please don’t forget to remember that the loved one that gave you this to read just wants you to understand what they go through every minute of every hour of every day without a break. They want you to know that they wish they could escape this invisible illness because they miss their old life and miss the life they lost with their family, friends, work colleagues, and most of all they miss the people closest to their hearts. But more than anything they just want everyone to believe them when they tell you what is wrong with them. Just because you can’t see it doesn’t mean it’s not real. If what we couldn’t see meant it wasn’t real then how would we breathe every day as we can’t see oxygen.
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Thank you for this amazing article Darren.
I don’t have fibro myself. My partner has. We have been together for almost 3 years now, and I’m still learning about fibro.
I know that it’s not easy for all you fibro Warriors, living day in and day out with pain. So for me this article was a good read and to try and get a better understanding of what my partner, and others are going through.
Sending much love and warm gentle healing hugs to you all!! 💜🤗💜🤗💜
Thank you so much for sharing your feeling and I’m sure your partner will appreciate all the research you are doing to be able to understand fibromyalgia. Have you had chance to read our ebook yet as that is packed with information about fibromyalgia and how to manage this illness on a daily basis.
This is a great article that really informs those around you what it is like living with Fibromyalgia and hopefully will make them all more supportive .Thank you for sharing x
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Wonderful article Darren. Thank you for sharing. This is a great way to let those close to us know what we go through daily.
Thank you for the feedback Christina
Like it. For the fatigue (& I’m more convinced than ever now that it is pure chronic fatigue that we suffer, along with all the other stuff but CF on its own is horrendous!) I like the analogy of the old phone. The battery is always the weakest part of the whole unit & the better phones become the bigger & more powerful batteries have to be to keep up. Sooner or later that phone is going to need a charge! That’s the equivalent of a sleep! We’re all know that a nice long restful sleep with the lie in once ina while does amazing things for the body! But imagine if you just can’t sleep! Well, you know full well, it doesn’t matter how long your old trusted phone has been on charge, hours or even days, how long i is been beeping 100%, the moment you take that phone off to use it, it’s not going to be happy! You’ll be lucky if you get 10 mins! If it’s something likea call or browsing that 10 becomes 2 mins! You’ll see the % falling like a brick! No, you can’t believe it! But you can’t afford to waste time staring at it, you’ve that job to do. Sometimes you’re lucky& the energy lasts, just! Other days, it beats you, the jobs half done, your trip tired to even make notes on where you got! Any pain you suffered gets louder as the battery dies. Eventually you’re going to need a recharge! Back to the armchair, plug yourself in!
You might literally crash out, wake up an hour later, ache a bit but feel “better” so time to go again? Well, would you trust that phone?🤔🤷 I wouldn’t!
So you’ve slept! Great! No! Sorry! All you’ve done is easy into your emergency energy reserve. If you’ve never had a pay gas or electric meter, you’ll know all about having to dash to the shops to top up, going out in the rain to try to top up or letter up & i it doesn’t w want to cooperate! & When it does go that £10 credit you put on is suddenly only £4 actual electric. You curse, then remember you u used almost all your reserve up so you’ve got to fill that back up first! Well, just like that, we find ourselves draining out reserve in seconds w/o realising it! What can you do? Nothing! All that sleep counts for nothing as all your doing is topping up a reserve, so you’re not even at 0 yet! Do you ever want to go into the “red” in a fuel car? Anyone who has generally that’s the first & last time it happens! But what if you’re using that energy so fast nothing works as expected? Welcome to fibromyalgia!
What makes it all worse is the body has a short of internal timer that says “x hrs is what you need to recharge, repair, rebuild your body for the next day!” All well & good but it doesn’t take account of the reserve, since when that alarm rings, you go to bed, unlike ours!
If you sleep 4 hrs during the day, you may only top up the reserve but you’re still 8hrs off that full charge! Only our charging system is old & battered, been out in the sun too much & just doesn’t work right! It might read 100 when it’s in reality screaming 10%. If it reads 100, your body is saying why am i in bed? Sleep, your body reminds you! But I’m charged! You try to stand up, fall over! 🤔 Yeah, maybe not! & You lie there another 3 hrs, putting time on that broken charging clock! Confused? Yep, your body is, totally! By 9am you finally click you’re not ina good place & your body relents & let’s you sleep n it’ll be glorious sun, your body has other ideas! That puts y your body clock out. Next night might be worse! Ever so often it all lines up & you might actually get some proper sleep! Don’t be fooled, even a stopped click is right twice a day (once if you use the 24hour clock!)
There is actually a biological basis to this that came out of studying COVID. The cellular energy producing process is complex but we learnt it was actually even more complex than we could imagine. The mitochondria (the cells power plants) are very versatile in how they work & can respond instantly. COVID however is the equivalent of throwing treacle in the engine! 🙄. And those mitochondria just never seen to be able to work correctly after that. There’s a long way to go on the research but it’s something about that family of viruses they think that just screwed the entire system up & as you know with that engine where treacle isn’t a good oil, good luck trying to fix it after that experiment! 🚮!
The body is a well oiled, delicate hand made, fine, Swiss watch, until someone suggests treacle makes a better lubricant!