Me

Me

Sunday, 19 May 2013

Ringing in my ears...Tinatus & Fibromyalgia

A little known symptom of Fibromyalgia is Tinatus (ringing in your ears) Ive had tinatus for close to 20 years from mild backlground noise to distracting and in my face!

So why am I calling it a symptom if I already had it, simply because its got worse and more persistent since I got Fibro. In my experience Fibro amplifies other pre-exisisting conditions if you have any. 

We know that as a suspected Auto-Immune system that I wrote about Lets look for a cure  it stands to reason that anything you had before will be exacerbated by fibro because of the way it distorts signals to the brain instead of interupting them, they turn the volume up if you like. So what was mild before over time becomes louder and louder.

NHS choices - symptoms Fibromyalgia

Tinatus - Symptoms

Im typing today with the high pitch squeal in both my ears this morning that is distracting to say the least, I have the TV on the same settings as ever - but today its isn't sending the Tinatus to the background. I manage usually with enough day to day noise I can "ignore" it.

Tinatus is a little understood or recognised condition. Imagine never ever ever being able to lie down in silence, lying in the sunshine, looking at the clouds, miles from anywhere and relaxing in the silence..wow Id love that except for me the ever present high pitched squeal kicks in.

I have learned to ignore it and never went to the docs thinking nothing can be done and no point in bothering, self management is often only thing you can do. I always have background noise on the radio very often,  mostly Radio 4 simply because I find talking radio allows my brain to tune in - where the unpredictability of music stations where high pitched songs can trigger a sensation so painful I have to turn it off.

What can help?

Medication CDs etc at bed time - when its really bad and i cant switch my brain off because of the noise - a talking mediation CD, or sound of the rain in my case can help tune my brain into the noise and i drift off.

Not focusing on it - when its mild and im not having an attack - yes titnuatus can and does ebb and flow having background noise on again helps to calm it down. When its bad like today I just try and get through it as best I can.

Got any tips? 
please leave comments or pop me a message if you ahve any good ideas for coping or reducing it because its an abolute swine  

Most of all dont ignore it and if it persisits for more than a few days go see your doctor


Sunday, 12 May 2013

Treating symptoms wont find a cure:: Fibromyalgia, M.E, Chronic Fatigue Awreness Day

Its international Fibromyalgia, ME, Chronic Fatigue awareness day today.

I have a primary diagnosis of fibromyaglia as many of you will know who read my blog, I also suspect I have M.E, as I fall somewhere between the two descriptions. It doesn't really matter as the list of symptoms I deal with daily are quite bad enough, thank you! I'm going to list them, not because I particularly enjoy having to take note of it all. But because I want to ask a question.

My symptoms
Which despite what the books say, have got progressively worse of the last 3 years - I am ever hopeful that this is as bad as it gets.

Neurological Symptoms
  • muscle spasms:
  • rippling
  • twitching
  • stinging/burning electric shock
  • can only describe as fizzing
  •  wobbly - poor balance
  • Numbness in all 4 limbs
  • Tingling in all 4 limbs
  • clumsy hands (drop things lots) 
  • Impaired distance judgement - trip on steps etc

Over sensitivity to:
  • Sound - high pitched, loud or even whistling hurts (hands over ears hurt)
  • Visual stimulation - my weird eye thing, visual disturbances
  • Touch - even lightest of touches can have me squirming - it hurts

Cognitive impairment
  • Poor short term memory
  • Easily confused on phone (those press 1 for help type things)
  • Cannot remember phone messages
  • cannot manage large complex forms etc
  • Lose words, easily lose words in mid sentence
  • Sometimes cannot think how to write (mental block) 
Other weirdness
  • Restless leg 
  • Insomnia
  • None restoiritve sleep (dont get enough REM sleep so wake up knackered)
  • Tinitus
  • IBS
  • Depression (what a shocker not)
  • sore throat that never turns into anything
I get the above symptoms to one degree or another, often in short bursts on a regular basis. The tingling can last for 5 minutes then go away. the more tired I become, particularly in the evenings,the more severe they get.

Pain & Fatigue
Many folks think it's just a bit tiring having this, or you get sore. as that's the most common descriptions. Pain and Fatigue are a massive factor in my life, but i wanted you to read the other symptoms first. Lets clear up this myth about fatigue:

I am not always tired - YES that's right, im not. What I expereince is:

Post exertion fatigue that's not commensurate with level of activity.

Uhhh you might be thinking - what that means is I tire very very easily - I have poor stamina so while i can appear fine one day and on top form, if i was to try and do the same day in day out for a couple of weeks or even months i would relapse and badly.

Basically its a lack of stamina, a bit like a battery that doseent full charge. I can and do push it sometimes and there are periods of the year where i have more stamina that at others most notably the summer months.

The more i add in to my day or week the quicker i drain the battery.

Pain - the pain is there and a bit like the fatigue its goes from okish to - I cant bear it please make it stop. I have a high pain threshold and I do think to a certain degree you get used to it and it kind of goes in to the back ground and only when you focus on it does it have a shout.

I take pain killers that for me keep the worst of the pain at bay - It does not haowever do anything for the neuropathic and neurological symptoms. 

So finally my question.

If you read the first list - ignoring the pain and fatigue elements first would you be worried?

would you want to find a cure or hope the medical profession might be looking very hard for a cause of all that?

Yeah I would too but you see with an "invisible illness" like mine the medical establishment the ones with power and influence have decided NOT to put all their effort into finding a cure - not what they put their effort into is

treating the symptoms with

GET (graded exercise therapy)
GAT (graded activity therapy)
CBT (cognitive behaviour therapy)
Anti depressants
Pain killers.
Pshysiotherapy

**Most commonly this is offered as an 8 week Pain Management Course.

In other words they are treating the symptoms and not looking for the cause and only treating one aspect of the symptoms at that. This is because  the esteemed wisdom by the doctors primarily lead by Psychiatrists is that all the above stem from a psychological illness - in other words I just believe im ill. and all the physical symptoms are because I believe it to be true.

There is a huge battle going on - to say that there is no evidence to counter these claims is untrue there is a growing body of evidence to say it is a

Complex Auto Immune disorder Pain Pathways
Small fibre neuropathy - Research showing  nerve ending damage
 New Research:  Wired and tired muscles
Update importance of Mast Cells in FMS & M.E Interesting research

Update New researcg looking at Chronic Fatigue/M.E Looking for Biomarkers/Pathoogy

Basically evidence is beginning to point that is an auto-immune disorder that causes the central nervous system to misfire. Not a psychological disorder.

I am not saying at all that,

moving around and and keeping muscle tone is a good thing, or that access to talking therapies isnt needed, because believe me it is. This is a tough illness to live with, with no outward signs except to people who know me well and can spot when I'm "dropping" the term often used for sudden onset of fatigue, triggers any of the above is happening.

But today of all days its time to follow the ball not not the man as they say - focusing on just the pain and the fatigue is missing all the other things. There is no test for it - and thats the problem because  many in the medical world have fallen into the mistaken belief that with no "physical" test it must have its origin in a psychological disorder.

I am ever hopeful that with the growing body of evidence the breakthrough may come and the idea of only treating the symptoms when you have no idea what so ever of what is causing them in the first place is dangerous science.

 I have no problem with the idea of symptom management - based on common sense.
Pacing is important, not pushing past limits, support for depression, a chance to talk - being supported to understand the link between emotional health and impact in physical health.

BUT

would you make someone with a broken leg do star jumps? no because that would be stupid.
So is devising exercise programmes that push people beyond their limits

would you make someone who gets wobbly in their feet and needs a stick for balance get rid of th stick because they just believe they need it? no because that's stupid 
so is pressurising people into pushing past their limits and relapsing

Would you dismiss all the cognitive, neuropathic symptomss and just focus on 1 aspect of an illness?

would you tell someone to push a bit harder and be positive cause well its only a bit tired and we all get tired?

Today is Fibromyalgia and M.E, chronic fatigue awareness day - I'm always aware of it and while I try extremely hard to be positive and get on with living my life as best i can. I appreciate for the people i love and who love me this is not easy, knowing that I have various things to help me get out and about like  my wheelchair is not easy. trying to understand when I appear ok and can do lots then don't appear for a while is not easy.

I still have the hope that one day I will:
  • Be able to work and earn money again in some capacity 
  • Be well enough to not need a wheelchair to be able to go out for the whole day and not relapse
  • That i will have found a good balance and manage to pace sufficiently to maintain a consistent level of activity (bearing in mind what my definition of that is and yours may be different)
and if I Don't manage to get back to paid employment - thats ok too because my value as a human being in not about how much money i earn, its about how i act and how much i contribute as a:
Wife
Sister
Mother
Daughter
Friend
Member of society
Volunteer

No one ever lay on thier death bed and said I wish Id earned more money they are more likely to say I wish id picked more daisies.

But biggest hope is:

That the researchers find the cause and from there find an effective cure. 

If you are worried you have Fibromyalgia or M.E

Make a list of all the symptoms you experience, how often and severity then go see your doctor.
tell them your symptoms not that you think its fibro. if they dismiss you see another Doctor. Don't give up.

Get some support and information here are some links:

 Fibroaction
Fibromyalgia UK
M.E Association
Online M.E/Chronic fatiugue Support Forum
Facebook look uk UK Fibro

Last but not least - i hear you, I believe you and if you need some support just leave me a message.

This blog is written with thanks to all the people who do beleive me, care about me and support me, even when I doubt myself.

Thank you - you know who you all are x











Wednesday, 1 May 2013

Are we really Undateable? #BADD13

This isn't the blog i intended to write today for the annual Blogging Against Disablism Day BADD13 I was umming and ahhhing about what to wirte - I wanted to focus on why disabled people are "locked out of society"

Still undecided, I was sent a link to some feedback about a blog - When Lovers and carers Collide I'd written a few months ago about - and when your lover is your carer. Ther lady who read it had felt very alone and reading my pepeice helped her. So here I am once again, exploring sexual identify. 

"Locked Out"

Looking at sexual attitudes is interesting, simply doing a bit of research - well googling stuff I found that the most common news article that came up when you type in the words Sex + Disability  gave me headlines that generally focused on the "undateability" of someone, or them needing to pay for sex!

shock horror hookers used in care home...the Sun

New Low Channel4 controversial - Mothers pays for escort to have sex with disabled son anged 26  Dail Mail

but then has a remarkably balanced piece written by a young disabled woman

Can disabled people enjoy sex when your severely disabled YES - Daily mail

Are Disabled people really undateable? Guardian

You could be fooled into thinking that disabled people never get laid, cant find a partner or are so ugly and "crippled" they can't be sexually fulfilled anyway, are all virgins..and if they arnt then either they got lucky, are rich or were already in a relationship or have paid for it..

Picture of a womans in fishnet stockings showing just her legs, and high heeled shoes..depicting a "sexy pose" no nudity
Picture of fishnet stocking clad legs,
Having read many of the comments below the articles - people seemed to either think disabled people have such a tough life we ought to allow them a little bit of happiness and if they have to pay for sex, well thats ok, Or say two consneting adults its no ones business. But the assumption was still firmly entrenched that disabled people are NOT dateable in a conventioanl way.

Sex and disability has often been seen as a bit of a tabbo at worst and not even considered at best. The concept of physically disabled people having sex is one thing, but ask the same question about two consenting adults with learning disabilities and I suspect the answer will be different. Why?

In part its because many people associate people with Learning Disabilities with a "child like" innocence and that is often extended into adulthood. To deny that people with some impairments have no sexual feeling or indentify is not for thier benefit but for the people making the assumption. As a parent I firmly believe that all children should have age appropriate information - Im not talking about sexualising children, Im talking about supporting our young people to understand what is and sint appropriate sexual behaviour, and how to feel confident in their own bodies.

Many people find talking about sex to be extremely difficult its can become a taboo subject meaning that young disabled adults are not given age appropriate education, supported to feel body confident and we wonder why the idea that turning to prostitution is the only way to fulfil any kind of sexual urge.

Many people feel incredibly excluded, demoralised and alone thinking they are the only ones who are struggling with their sexual identity.

I feel very strongly that this is inherently linked to our body image, confidence, acceptance and a sense of self that is so often stigmatised and belittled. How many of us want to be been as news paper headline fodder, or a mockumentary star that sensationalises sex, or even pities it.

I blogged recently for the excellent Enahnce The UK - who have a campaign called undressing disability. There is a slow but steady sea change where its important the more visible and "normalised" something becomes the less sensational it is.

Finding decent information, fact sheets, toys, ideas or tips is tricky as you have to navigate your way though shock horror headlines..No one ever pointed me towards good information - all too often its not considered.

Impairments, tastes, sexuality, experiences differ but what we all have in common is a need to find sexual relief in the way that suits us best..some charities think basic care needs are more important but i would argue that the art of getting laid is about confidence - if we actually started to invest in disabled people, where confidence, independence and personal expression where given equal status to care needs we might actually start getting somewhere.

Confident,  body positive people invariably attract people - take Mik Scarlett for instance Sex are we really so different he is not only cool but his wife is so hot even I as a heterosexual woman appreciate her hotness..how did he attract her..his personality, his charisma his confidence and maybe as she said - im sure i read it his bare faced cheek..what ever it was that lit the spark it certainly wasn't because he was sat apologising for his very existence.

I was already ill when i met my lovely LM - if he had met me a year before when I had just come out of a relationship im not sure we would have hit it off not because of my illness but because I wasn't confident, didn't feel sexy and wasn't ready...

its very rarely to do with impairment if it was then many profoundly disabled people would not have partners..thats what disablism is for me - its being "locked out" and not supported to be confident, to aspire and to not feel like we should apologise for ourselves.

Good information is one thing but lets get naked, undress it and not accept that the only kind of sexuality we can explore is one we have to pay for.


sources of help, support and good sex toys..

http://spokzpeople.org.uk/resources.asp

Undressing disability - Enhance the UK

Mick Scarlett - Enhance your sex life

sex toys..if its good enough for 50 shades of grey its good enough for us