There are many things in my everyday life that I didn't realise Fibromyalgia would have an impact on. Not that I had a choice in developing the condition, but I wish I'd known how much my life was going to change before it did.
I'm writing this post (as with all my fibro posts) to inform people of the condition as it goes unheard of or misinterpreted so often. I also hope that it reassures other fibro sufferers that feel they're alone with these fears and circumstances, that they're not.
You can read my Fibro story here.
Your job is at risk.
I got to the point back in November 2016 where I had no choice but to go on the sick for 4 weeks. I couldn't walk due to my Fibro.
On my return I had to meet with HR as I had breached sickness policy. Fortunately I still have my job however I am now only allowed 2 consecutive days or 1 period of sickness leave in every 4 months; if I breach this, HR escalate my case higher and I'll probably lose my job.I got to the point back in November 2016 where I had no choice but to go on the sick for 4 weeks. I couldn't walk due to my Fibro.
In normal circumstances I agree with the policy (you'll soon catch out all those abusing the sickness system this way) but I feel disabled people should have a better policy to suit individual needs. There is no telling when my Fibro is going to flare up; it could be within and for days, weeks, months, years but work are only going to let me recover for 2 days once every 4 months.
Then there's the physical side of things. If my Fibro deteriorates, will I be able to drive myself to work? (my partner takes me 2/4 days), will I be able to be on my feet all day? Will I physically be able to do what is expected of me? If this happens I'll more than likely lose my job. Who wants to be paying for somebody who can't do basic things they're employed to do?
Your training and qualifications may never be put to use.
I trained as a photographer and even though this route isn't where my career path has led me, I now couldn't hold my camera if I wanted to use my skills as a plan B. This will go for many people; all those that have studied or are studying for many years to become nurses may not be able to continue, firemen, lawyers, police officers, teachers, accountants, dancers; they will all face difficulty in doing their job at some point and may eventually have to give it up or even be sacked due to the symptoms of fibromyalgia.
I trained as a photographer and even though this route isn't where my career path has led me, I now couldn't hold my camera if I wanted to use my skills as a plan B. This will go for many people; all those that have studied or are studying for many years to become nurses may not be able to continue, firemen, lawyers, police officers, teachers, accountants, dancers; they will all face difficulty in doing their job at some point and may eventually have to give it up or even be sacked due to the symptoms of fibromyalgia.
You lose your friends.
I've never had a big friendship circle but those friends I did have are now next to non existent. I nap all the time when I'm not at work. Going out seems impossible. Hell, even texting somebody back feels like effort most days!! It's so easy for friendships to deteriorate when communication fades.
I've never had a big friendship circle but those friends I did have are now next to non existent. I nap all the time when I'm not at work. Going out seems impossible. Hell, even texting somebody back feels like effort most days!! It's so easy for friendships to deteriorate when communication fades.
You thought you knew the meaning of the word "exhausted".
I've struggled with tiredness for years but I never experienced tiredness in this measure. I can't even climb the stairs in my house without having to have a sit down when I get to the top. If I go out for a walk with the dog for half hour, I have to have a nap. I fall asleep watching films, when I'm at work, in the car etc.; the list could go on forever. It's said that for a "normal" person to be this exhausted, they would have to not sleep for 3 nights.
I've struggled with tiredness for years but I never experienced tiredness in this measure. I can't even climb the stairs in my house without having to have a sit down when I get to the top. If I go out for a walk with the dog for half hour, I have to have a nap. I fall asleep watching films, when I'm at work, in the car etc.; the list could go on forever. It's said that for a "normal" person to be this exhausted, they would have to not sleep for 3 nights.
Asking for help happens a lot more often.
I hate asking for help so this doesn't come easy to me. I've tried to push through things without asking for help but it either ends in severe exhaustion or I end up making a mess/hurting myself in the process.
I hate that I now have to ask for people to use a tin opener for me, to help me up from a sitting position, to support me whilst walking or to open a bottle of pop.
I hate asking for help so this doesn't come easy to me. I've tried to push through things without asking for help but it either ends in severe exhaustion or I end up making a mess/hurting myself in the process.
I hate that I now have to ask for people to use a tin opener for me, to help me up from a sitting position, to support me whilst walking or to open a bottle of pop.
Help by claiming for disability benefits to financially help and asking for support from social services is a strange feeling.
A year ago, I was fine and now I'm struggling at work and home to live a normal life. My house rapidly turned into a hospital looking setting. I have a bath lift, a perching stool and a grab rail on my bed. I was also supposed to be having grab rails in other rooms and a second stair banister but as it's not my house, I wasn't granted permission. I wish they'd make these things less "hospital looking". These aids are my 'help' to live a somewhat independent life.
To have to ask for money from the DWP is a vile feeling. I had to drop a day and a half at work due to my Fibro and mental health meaning I was struggling every month due to being £300 worse off.
You'll get a lot of unwanted and useless advice.
So many people become "doctors" when you become ill; its no different for Fibromyalgia. I've been told that taking Vitamin B and Calcium will cure my tiredness, that if I go to sleep earlier I won't be so tired, if I have a bath my pains will be better and the best one "if you lose weight you'll have less pain"... it's all rubbish. There's no cure, we just have to manage our symptoms. These suggestions may make things slightly better but it usually has very little to no impact at all.
So many people become "doctors" when you become ill; its no different for Fibromyalgia. I've been told that taking Vitamin B and Calcium will cure my tiredness, that if I go to sleep earlier I won't be so tired, if I have a bath my pains will be better and the best one "if you lose weight you'll have less pain"... it's all rubbish. There's no cure, we just have to manage our symptoms. These suggestions may make things slightly better but it usually has very little to no impact at all.
Your pain threshold goes out the window.
Considering I could pierce my own nose and many other parts of my body a few years ago seems insane. Now I can't even be held too tight due to pain/discomfort. It even hurts to wear clothes some days!!
Considering I could pierce my own nose and many other parts of my body a few years ago seems insane. Now I can't even be held too tight due to pain/discomfort. It even hurts to wear clothes some days!!
You fear for your future.
That house you were going to buy with your mortgage, you may never get that opportunity; you don't know how long you're going to be physically able to work for.
That house you were going to buy with your mortgage, you may never get that opportunity; you don't know how long you're going to be physically able to work for.
The kids that you planned on having, they too could be out of the question; how will you afford them if you end up not being able to work? Will you be physically able to raise them? What about going through a pregnancy without any pain medication with the added pains from carrying a child? You catch my drift.
You lose patience with people.
I cannot stand those people that moan about very minor pain (headaches are most common). I know people don't think about what they're saying and who they're saying it to but it still doesn't stop the urge for me to scream "you don't know the meaning of the word pain!" at them.
I cannot stand those people that moan about very minor pain (headaches are most common). I know people don't think about what they're saying and who they're saying it to but it still doesn't stop the urge for me to scream "you don't know the meaning of the word pain!" at them.
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