Monday 24 February 2014

THE FIBROMYALGIA SHORT VERSION

EDIT: I just noticed that yet again a number of posts have not bloody POSTED and added to this my keywords have all gone missing too!! Google at its most incompetent best or a didgy tablet PC?!

FIBROMYALGIA ASSOCIATION UK BOOKLET (15 Pages)

Despite being a UK booklet and association it is written by an American Doctor!

PAGE 2

Fibromyalgia is a common illness. In fact it is more common than rheumatoid arthritis and can be more painful.

Condition cannot be identified using standard laboratory tests, or x-rays. (But I believe the cause could be identified in x-rays.)

PAGE 3

Causes can be car accident (had two) and viral infection (had one of these years ago too which left me with problems with ears and throat)

Pharmacological  management of Fibromyalgia in the UK often involves 'off-label' medications focused on the relief of symptoms rather than a treatment of the condition.
Many people find available medications either insufficient, or difficult to tolerate due to high incidence of adverse effects.

PAGE 3

Start of section on exercise.

PAGE 4

Starts section on Welfare Benefits and covers DLA and PIP. Obviously written by English people.

PAGE 5

Still under welfare benefits mentions states that you should refuse to do things that cause pain and this includes turning up for the assessment.

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One of the most frequent comments we hear from people with Fibromyalgia is, "The government does not recognise Fibromyalgia."

This is not true both the DWP and the Health Department have starred that they recognise it. (Umm no I do not think so! They inhabit did not really think that statement through did they now? Sounds like something the DWP or NHS would say when someone like me accuses then of what they have done and his the condition from me out refuse to diagnose it?!)

FOR THOSE WHO CARE

It can be difficult to live with and care for a person living with a chronic condition like Fibromyalgia but you need not core alone. Fibromyalgia Association UK not only cares about those diagnosed with Fibromyalgia, but also cares about you, the people who live with and look after us.

Section called 'We Look So Well' (yup applies to a number of idiots)

In view of the constantly changing levels and sites of pain you may have thought that the person troubled with Fibromyalgia was going mad or just being idle.

Don't feel guilty if you have because we have wondered the same things about ourselves. How can we LOOK so well and fell so bad?

It is often referred to add the invisible condition or the irritable everything because there are no visible signs, but inside we are hurting and our self esteem may be very low. We may Ferrell we are letting everyone down.

Try to talk about these conditions (are you having a laugh?) and learn to recognise mood swings.

PAGE 10

Two sections on 'We Have Our Bad Days' and 'Making The Most Of A Good Day'
You may have noticed that a person with Fibromyalgia become easily confused and has shirt term memory blanks, perhaps forgetting a birthday or anniversary, getting words mixed up our missing them out altogether sometimes stopping in the middle of a sentence completely forgetting what was being said. These symptoms are often more distressing than the pain or the fatigue.

1. Writing can sometimes be difficult the use of a computer can assist

2. Art and Crafts can ease tension

3. Keep a good SUPPLY OF BOOKS AND ANYTHING ELSE THAT WILL ENTERTAIN!!

4. Encourage the learning of new skills. Change can be very rewarding.

What are the tasks sufferers find most difficult?

1. Carrying a shopping bag

2. Inaccessible items (impossible in my house but I started my house was WRONG)

3. Avoid excessive reaching

4. Keep floor area clear to prevent tripping

Family and friends can help a great deal in the  management of Fibromyalgia (LMAO) by learning as much as possible about the condition?! (I had one on the phone recently that STILL QUESTIONED that I had it and obviously has not read a damn thing about it in FOUR MONTHS!! But still thinks they can say what they like and advise because having a job blesses you with wisdom and intelligence no doubt?)

Section titled 'It's Good To Talk' 

(..and have quite obviously NEVER meet a family like mine!! In fact one of the reasons I am typing this out is despite the good books being 60 pages long and this booklet being 15 pages long and this blog being here 18 months I have put this here to use the keyword ' Fibromyalgia Twitter Version' to tell anyone I need to to search for that term on my blog and they will find this version!! Just over TWO PAGES LONGl!)

Bearing in mind I diagnosed my condition somewhere between my last GP  appointment with was June or July 2013 and owned several books on Fibromyalgia by my first appointment with my current Doctor, 4th December 2013, so diagnosed it at least for months ago but likely 5 months ago I can point then to this page when I get the 'attitude' in future from any of them?!

The funny thing is that I NEVER go to them, I have been nagged and moaned at about that since time in memorial, and they extremely stately come to me. So I see most of them once a year possibly, maybe twice with some that does not involve a family function. The only one I do see more often had spent the last dozen years telling me about all their different things and local people duck for cover when they are seen coming up the road. One woman turned to another and said 'quick let's go, if we get caught here we won't get away and we will have to endure a life history'

It is sad, but true. Everything has to be worse with them. I have been checking the latest thing I have been told about but it does not sound all that terrible and many times no symptoms. But if I copied and pasted the text message on here you would be forgiven for thinking that terminal cancer was suspected, let alone diagnosed! So really I prefer to stay on my own and deal with out myself as the only one that visits me probably does so because of guilt that I have never had attention not hero while they have had people bend over backwards repeatedly for them!

In fact if there was ever w family argument about support I would simply ask those involved to just the things that the two of us have had done for each of us.
Theirs would have dozens of things in the last 7 years.

Mine would have one! That was from about teen years ago. There could be things on the list but they were never things I needed not asked for. In fact the only one that is on my mind I specifically text them immediately stating I did not want it and did my Orchids alloy of damage!

But your not supposed to concern yourself with and of that, they did something for you and therefore you should be on your knees for the rest of your miserable life because they ate the only ones that do it!!

What I can never figure out is why they do the things for you that they think you should do or think you should have?! They never listen to what you actually say you want our you need! EVER!

Yet they have fallen out with so many people close to them it is unbelievable to imagine how they cannot see the reason?! One even emigrating to Australia after falling out the last time and no contact has been heard from since! In fact they stated to me the same thing that not only did many of us know but that which the person guilty of doing complains that no one else does!

Listening! But they are actually the worst individual in the world for listening to anyone else and if you mention it all you get are excuses that do not wash. Yet I have medical excuses and they are merely batted to one side as insignificant.

I would rather throw myself of Tower Bridge in London than be like that?! I have had my condition to the point of affecting my life for thirteen years and have had many symptoms a lot longer.

Yet I have NEVER gone after sympathy and only twice ever asked for help, which I failed to get each time. In fact I have one mate who likes to have a home because he knows how self centred one family member is and I always take a few seconds to pick up on what he is jibing at. He says 'Have you got your shoes yet?' Which has been a joke now for a year.

Hmm ... maybe ... even ... longer?!

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