Tag: #disability #illness #fibro #fibromyalgia #depression #unseenillness #Jonesy #chronicillness

I have been diagnosed around 8yrs. In that time I have discovered every person’s path is different, but with all too many common features. The Internet is full of so called cures and treatments, all with their own guarantees.
I have tried a few, from creams to spices, honey and sprays, liquids to tablets. To be honest for me none have worked. But that’s only my experience.
Fibromyalgia is like it is with so many others, only one of my health issues, physical and sadly developing into mental health and effecting my emotional wellbeing. 
Years of pain clinic resulted in my being discharged due to no further options left for non terminal patients.
So now it’s a lonely battle.
Diet may help some but my other illnesses make that complicated.
People scream exercise, but when extreme exhaustion sets in, exercise is the last thing on my mind, reaching for my underwear in the morning is a battle enough.
When I was diagnosed, a woman running the local support group told me not to worry, after 2yrs I would manage the fibro and be back at work. Like I said, that was 8yrs ago, and I truly am not in the position she forecast.
Fibromyalgia has reduced my social circle, stripped my confidence, stolen my options in life. My family do not believe in it, my kids, now adults share their mother’s view that I am a useless disabled lazy @*#%. They have no contact with me.
Reading this you may think you journey is hopeless, but it’s not, every single one is different as I said.
I personally may have quite a few days I can manages, where I can hide my pain, pretend I am not vulnerable, even do some things I did before illness hit. Other days though, no one sees me,I become a hermit, struggling to get up in the morning pr get back into bed.
Other folk cope better, or sadly for a few, worse.
The more manageable days are the only reason I continue. For others they may adapt, they may find a relief I have not.
So do not give up hope, but if you walk (shuffle in agony) a similar path to me, you are not alone.
And never despite all the pressure from the press, the dwp and others feel any guilt for actually living, on the few days you can.

FIBRO, such a daft innocuous term for fibromyalgia, a rheumatic condition (as defined by OED) that absolutely destroys life.

It does not kill directly as in not a fatal illness, it does, however, strip its victims of all they had taken for granted, including their future.

It imposes chronic pain every single day. You as an observer likely will never actually recognise this because people with fibro become so adept at hiding pain on the better days, not because of some super resilience to it, but because of the shame, the discrimination and overwhelming belief that they have become useless that they direct upon themselves, mirroring your partially hidden view that such people are weak and pathetic.

I mentioned shame, because shame becomes a huge part of living with fibro. You know yourself it’s not fatal but there are all too many days you wish it were. The better days mean that with the aid of pain killers, of losing days and weeks at times you get to function for an hour, a day, a few days maybe as if you were a human being.

On those days you feel embarrassed to look well, to walk without sticks, to not have to use your wheel chair, your scooter, to actually be out of the house not just out of bed. 

We see folk on social media, in the street, at our all too often hospital appointments with what are in many ways worse illnesses such as cancer, MS……the list is as infinite as people , and we feel shame, shame that our little word “fibro” will not in itself be terminal. Its at this point that we are too often overwhelmed with guilt at seeing ourselves as disabled.

Then a bad day hits. On these days the pain goes from a constant ache rating of 6 on a scale of one to ten, up to beyond double figures. It’s still an ache but one that overwhelms all your senses as one. It’s like having the worst headache and toothache all over your body.

On these days you can’t move your body to get comfortable, because you truly have no energy to move. Everything, every little bit of strength you had, is now expended by your body trying to find a way to numb the pain. When you try to move, your ache becomes a sharp pain.

Limbs become heavy and useless, even more than they usually are due to loss if muscle density, your thoughts become jumbled and when there is any clarity beyond the fog it is either used up wishing for a way to end the pain, or a realisation that these experiences are likely with you for life.

If you are lucky enough not to live alone, you still try to hide just how bad the pain is because you feel a pathetic burden to those who care for you. Only hiding this is kinda impossible because you struggle even to make the bathroom, so now it’s back to feeling pathetic.

When you are on your own, at least you get to cry.

The thing about fibro is that it likely is due to your body or mind living through some form of fairly severe trauma.

Fibro rarely lives alone in your body. For me, it resides with Crohns Disease, Diabetes, Angina, Diabetic Neuropathy, COPD, Asthma, High Blood Pressure, SVT, PTSD, and sadly along with these it has enabled and promoted Depression and Anxiety.

As I said, Fibro doesn’t kill directly. It does, however, make you wish you were dead. In my body, some of my illnesses may end my existence as part of their hold within my flesh. The most likely killers for me are Crohns, Diabetes (killed my kid brother), and the Depression (possibly the biggest killer of all).

If you are living with Fibro on your own, a flare up can mean you cannot eat, can’t get out, cannot shop, cannot cook, cannot toilet yourself and cannot think (so even online shops are not going to happen).

I have not written this to scare folk, not to appease my own guilt I feel for suffering with fibro, nor the guilt I carry for not believing how bad it could be before I ended up with it.

I have written this because even now, there are people,including doctors and nurses, sadly that do not believe the Fibromyalgia is real. They look at the evidence, listen to the patients living with it and still say its made up.

Well I can promise you all it isn’t.

I get as frustrated as hell at the all too prevalent medieval views of some folk. If you can’t see it, it’s either all in the mind or not real.

Fibro is not all in the mind, on our better days we too may choose to think it is not that bad,but then it hits again, and we are reminded that this ‘condition’ controls our lives, that we cannot plan beyond a day (sometimes hour), that we are unable to keep appointments, cannot book holidays or even a show without the realisation we are unlikely to make it.

So when you are told by someone that they have fibromyalgia, or any chronic illness, do not see them as a victim, they are not, they are bloody fighters in a war I hope you never ever get to experience or fight.

Jonesy