Poem- Fibromyalgia

[onebigvoice]

FIBROMYALGIA, A HIDDEN ILLNESS.

I’ve had many people ask me, what fibromyalgia is

I’ve even asked the Doctor, because there not always on display.

They say that it is my head, which hurts me all the time,

But why is all the rest of me, also hurting as I rhyme.

There must be something I can do, to stop and have respite

I’ve even asked the doctor and my loving wife.

They seem to have the same conclusions, that its all just in my head.

Do you know what I think, I’ll just go back to bed.

If I take the tablets, which do give some respite when I do

But actually, they now cause a new set of pain, cause my stomach is hurting to,

which is not really on view, but it hangs over my belt, which is twice the size of you.

The Doctors say its in my head, well they need to take another look,

Because of mental illness and chronic headaches, I’m falling apart

I’m at the point that I can’t function, oh brain what are you doing,

Don’t you realise that you’re the cause, of all this bloody mess.

Why don’t we come to an agreement just between you and me?

And I’ll stop taking the tablets that affect the brain,

If you stop all the signals that is causing us so much pain

Well since I stopped taking them and spoke to my doctor first,

Agreed to change the strength of some and give me some that go up my B**

Now after a few of these I realise that he may have been right.

As the cause was constipation the scourge of my life.

SO now at last a little change was made, and health eating seems on the cards

Which has stopped the stomach cramps, and stress and strains within.

And with the help of the doctor, a new cycle is about to begin,

Its not always easy to diagnose an illness that not on display

But comes from YES within.

[Earworm]

Well versed Onebigvoice x

[Hidden]

You pretty much nailed fibro there! Everyone looks at me like I'm fine. It pees me right off! Fed up of explaining myself! Xx

[onebigvoice]

Because it Mental awareness week sorry guys I have written another poem.its my release, and hope you enjoy:

Mental awareness week

Its easy to say its mental awareness week, but what does that really mean

If you have never had it, it’s so hard to explain.

But I got to thinking about it, how do I describe this thing I have

When someone called a doctor, has trouble to explain.

I went in with a view that there is nothing wrong, until I realised all this was already happening to me.

They talked about brain fog, and lapses of memory to, and asked me what day it was

I just said, well why are you asking me?

Its just a test to see if you comprehend where you are, I said I know where I am

that guy just brought me here?

Don’t you know who that guy is? He seemed to want to know.

I said it’s the Taxi driver from down the road.

They showed me a picture of the taxi driver and said now do you know?

And stood next to him was me his loving wife?

When did you have that taken it looks just like me,

And he said its June the 10th 1972?

I looked again at that photo, and realised that something was wrong

When I saw my mum and dad, and his parents there.

I thought your parents died years ago, and asked what year it was,

To find its not 1976 as that would make me 26?

The man I didn’t recognised, had taken me for his wife?

Now things were starting to send me, into a downward spin.

It’s a pain that starts in my head and continues all within.

I broke down and sobbed, I’ve had a mental block and don’t know who I am.

I realise that I need help, it doesn’t always show, and found out I had been like this for some time even though it doesn’t show.

I am learning to cope with the people around me now, but to me they are all strangers

but call them my family now.

How long will it take, to fix me, no one really knows, as the other thing they tell me, is its one minute I’m OK, and then it suddenly goes.

I write things down and keep a book when fine, to remind me where I am in time.

Some times I go for days and every thing is great, then wake up in the morning like Groundhog Day and weeks have disappeared, never to be replaced

I am coping better than before because of the support I get, and from my family, even though I need reminding that I‘m getting there and its very late.

I am afraid to sleep some time, because I think that this is a bad dream,

And am not married, and have no kids, so where have I really been.

I am in here somewhere, they just need to look

And try not to get the answers from out of that black book.

I’m tired now and need to go sleep, but first a note in my book

so, I could take a look when waking, and enjoy my family and friends again, again and again.

I want to know how the person that gave me a certificate to say that I am sane,

Hasn’t got one, just the same as me?

[bookish in reply to onebigvoice]

Thank you for sharing your thought-provoking poems.

I wonder if you have a record of your last B12 and folate blood tests, or whether you are already supplementing? (If not, please don't start until tested, as it messes with the result - and my apologies if I am telling you stuff you already know.) Best wishes

[onebigvoice in reply to bookish]

I have been having my bloods taken monthly for about 10 years now, as I am on Methotrexate and a cocktail of other drugs daily. In Taking Tramadol over max strength and for long periods 2 years plus it knackered up my liver and stomach. Its all a fine balancing act and has taken many years to get where I am. So to everyone who has Fibromyalgia whether undiagnosed or diagnosed be patient with your self and if you find that things are NOT going well, then make an appointment to see your GP and explain again. My ice breaker with my GP as he was quite abrupt, was and how are you doing today? If I was great I would not be here trying to waste everyone's time.

You need a rapport with your G P as he has only a few minutes with you to see what is wrong.

[bookish in reply to onebigvoice]

Well done for finding a way to get a rapport with your GP. You are so right about it being a fine balance. I expect if you are on Methotrexate they already give you folate if appropriate (although it may be as folic acid, and you may get on better with folate as methylfolate - some do, some don't, but in small quantities only if you feel like trying it, and best to discuss it if you have someone you can actually talk to.) Unfortunately some medications reduce our B vitamins and they aren't always so easy to measure by just looking at serum. B12 can be anywhere in the range and you can still have a functional deficiency, but the extra testing needed often isn't done. Sorry about the Tramadol effects. I was on it for a long time (15 years) and am glad to be off, but dose wasn't so high. Cheers

[onebigvoice in reply to bookish]

The joys of having pains in your head...... back, lower back, Knees, Bottom of feet, just about every where so with the cocktail of tablets I couldn't tell if there was a pain there or not.

[bookish in reply to onebigvoice]

One of the reasons I personally decided to stop all my prescribed medication (slowly, over time, with GP and consultant's knowledge, and not for a minute suggesting that this is the right option for anyone else, never mind everyone). Then I worked on diet and supplements where needed to get vitamins and minerals as good as possible - still doing that, but so much better than I was, plus feeling like I now have some control and input as well as more understanding. Pain not gone, illnesses still here (hopefully slowed it all down a bit), but brain working better, pain lower, mood better, more tools at my disposal for coping with bad patches. If a medication was suggested that had more impact than what I'm doing, I would add it, but at the moment no-one has any suggestions.

[onebigvoice in reply to bookish]

This is exactly it. What may be good for me may be not at all good for others. This is why regular check up's of your meds are paramount to getting you back as best that can be under the circumstances for you. In time once things settle sleep and rest become easier and the need of sleeping tablets will be less, its learning how to switch off.

Watching T V till stupid o'clock because you cant sleep must stop and just set a time for bed and go. when laying in bed I don't think that you can affect the price of fish in China, so give your brain something to think about like tomorrow I am going to go to the beach and have a coffee, or walk over to the park and check out that new cafe' you saw today.

You want to be in control. Not saying its easy but, its a start.