#flareup #spoonie #ChronicPain #Fibro #Fibromyalgia And so it goes on…..

You just know it don’t you, when life is busy, there’s not a chance to breathe and you’re not managing to give yourself a moments attention. Fibro decides when it’s going to give you a break, but it also decides to whack you on the head completely unexpectedly.  I always know when I’m nearing my Annual Leave from work.  Fibro seems to predict and wants to wind down before I’m actually ready to.  As always, the last few weeks before I go are very hectic for me, so if FlareUp Fibro would just give me a bit of a break that would be nice!

Flare Up’s remind you of the worst that Fibro has to throw at you.  My eyeballs feel like huge rusted ball bearings with eyelids turned inside out.  Thump, thump, thump of pulsing headaches which radiate from my neck, into my shoulders and once again the notion of wanting to do away with my left arm rise above.  The worst part is when the brain and mouth are not connected and don’t talk to each other resulting in lost language, thought and concentration  It’s crazy to think that the body/mind can be so fu*ked up with mixed messages, neurons and referred pain.  No rhyme or reason, but that’s Fibro for you.

I have been fortunate to have got involved in project called Work4Me

Image

The Base Project supports self-employment using on-line tools.  I use a huge amount of technology, apps and widgets to help me do what I do anyway.  Everything I use on-line very much makes life easier for me, from reminders, diary dates, notebooks, combined email accounts, finance, business, training and specific apps that help with all aspect of my working life.  As my ultimate goal is to be based at home, working in a much healthier way, with a routine I can control, this is exactly what I’ve been looking for.   

So, it’s times like this that remind me what my ultimate goal is and how much I need to get on get myself ready for it. I’m not doing myself any favours carrying on the way I am but I know I have to take it one step at a time. 

 

National Suicide Prevention Week 2013

National Suicide Prevention Week 2013

World Suicide Prevention Day

This week has been a very significant week in the calendar of health events. World Suicide Prevention Day on the 10th September tied in with this whole week of Suicide Prevention which is now coming to an end for another year.

I have seen a great response on social media, blogs, newspapers, forums and live chats.

Working in mental health there isn’t a day that goes by where I don’t have some involvement in suicide awareness, depression, supportive measures, individual difficulties and problems and of course the positives in seeing people get better.  Nothing can really bring home the true cost of poor mental health other than direct support work with individuals, carers and families.  The stories, the exhaustion, the frustration with service, and the positives all have a huge impact on the way I go about my work.

There used to be a time when I would count the days, months and then years since I had been admitted to hospital for having tried to take my own life. I’m glad to say I stopped counting a while ago now when in 1998 I vowed it would be my last and it was. This coincided with a few significant key moments. Being a missing person, being in complete and utter despair, guilt at what I was doing to those I’d left behind, guilt that I was costing enormous amounts of money on police searches, being locked up in a police cell and lastly sitting defeated in a psychiatric hospital yet AGAIN. It wouldn’t be my last hospital admission but that wasn’t too far behind.

Many times during my period of poor wellbeing which went on for 18 years I really didn’t know what direction I was going in. I knew so many of my problems about the way I thought and behaved went back to childhood. How are we, as we get in to adulthood, meant to make sense of all the negative and traumatic events that happen to us? These events happened during times when we fail to fully realise or understand the impact this is going to have on us later on.

For me, this ties in very well with Suicide Prevention Week. The people we need to be targeting and talking to about suicide, desperation, despair, isolation and loneliness are youngsters. Why?

Young people learn too many negative emotions, behaviours and stigma in relation to sharing how they feel. One negative reaction, comment or sign towards those feeling sad and you can lose someone for a very long time. They may never ever in the future be able to reach out, trust you and say ” I’m not OK, I need help”. This is the kind of damage that can last a lifetime and we wonder why we have such a hard time reducing the suicide fatalities. If that’s not enough we don’t keep records and stats on how many people attempt to take their own life. It doesn’t matter whether someone really meant it or not. After all, a percentage of those who make attempts do in fact go on to die by suicide.  It’s the very fact that they felt so low and so desperate to even think of it as a possible solution.

Attempts damage lives too.  They cause huge emotional turmoil for people who’ve attempted, their families, friends, work prospects, education, on-going well-being and can scar people psychologically for many years to come.

For me, I’d like to see far more work done with young people. Practical workshops, drama, art and music are all ways that can be used to engage young people in what mental well-being actually means, trust, compassion, communication and most of all getting to know themselves and feel comfortable with sadness and loss and at what point to seek further help.

And lastly, let’s be realistic, we will never not have people take their own lives, but what we can do is help some of those make changes to lead better, happier and more content lives where they don’t feel the suicide needs to be an option.

Researchers find main source of chronic fibromyalgia pain in blood vessels

The “get more sleep and exercise regularly.” is the worst advice you could ever give to someone with Fibro. Will be great to see what becomes of this.

Fighting Fibromyalgia

I just came across this article and had to share it immediately! Finally! Some real hope for a cure for this awful, invisible disease! Finally, some real proof that this is not all in our heads that surely will convince everyone in the medical community what we’ve all be shouting at them for ages. This made my week and it’s only Monday! Things can only go better from here!

 

Fibromyalgia Mystery Finally Solved!

Researchers Find Main Source of Pain in Blood Vessels

Researchers have found the main source of pain in Fibromyalgia patients, and contrary to what many believe, it does not stem from the brain. The findings mark the end of a decades-old mystery about the disease, which many doctors believed was conjured in patients’ imaginations. The mystery of Fibromyalgia has left millions of sufferers searching for hope in pain medications. Up until recently, many physicians thought that…

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By MentalHealthProfessional_CombatingFibromyalgia Posted in Fibro

Carers and Stress and Depression

Such an important issue…………………

Carers Speaking Out

We are told that the CEO s of the Big Banks get paid the big money as they have to make the big decisions. We we know from experience that they didn’t always get them right.

This isn’t a rant about the bankers it’s about the tough decisions we as carers make every day.  The stress of looking after someone 24/7 figures show that Carers are twice as likely to suffer from Depression. I myself suffer from Clinical  Depression I have to take Anti Depressants and still have days when I am very down. I find these days are more likely to happen when I feel I am getting nowhere particularly in relation to  Claire s health and battling the powers that be to get help, where is am labelled a bully for speaking up for my wife or indeed on days where I know that Claire’s pain is bad…

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By MentalHealthProfessional_CombatingFibromyalgia Posted in Fibro
Link

Fibro + Alpha-Stim @AlphaStimEurope

Alpha StimAfter much searching, reading and analysing, I decided at the beginning of January to purchase an Alpha-Stim device.  I had heard many people saying that a lot of the research was not in large enough studies for it to be conclusive.  But, for me, there was one important influence that made me decide to give it a go.  In fact there were really a few….the first one was that I was not going to purchase it for a solution to Fibromyalgia as there isn’t one.  Secondly I’ve spent a small fortune on complimentary treatments and scans and for me over time this potentially could be something that I could fall back on should I not have the added fortune of a decent income.

Ok, so the site does look like a marketing persuasion, the device looks gimmicky and there are some sceptics out there.  What I will say is that I have already felt the benefit from using this device and I know I probably won’t ever gain 100% relief.  What it is giving me is something I can use on a daily basis, something that’s portable, easy to use and does have some very positive feedback and recommendations.

As I’ve said in previous posts, I’m not a ‘acceptance’ person, I’m not the Chronic Pain Services’ model patient where I vow to manage and tolerate my condition.  That just won’t happen, I have too much drive and ambition to settle for that. I don’t actually believe in pacing, I don’t mentally think it does you any favours.  So, this is my best friend at the moment and that’s ok 🙂

It’s been a while since I’ve posted, but things have been very busy and life is toddling along even if I do still struggle to get up in the morning.  2013 seems to be flying by at a faster rate of knots than I can keep up with and at times I do wish it would slow down!

Till next time….

 

 

By MentalHealthProfessional_CombatingFibromyalgia Posted in Fibro

This encompasses the sad reality of what’s going on right now and it doesn’t make nice reading. 😦

the void

jobcentreThe shocking story of Jobcentre abuse recently published on Disabled People Against Cuts’ (DPAC) website will be all too familiar to many claimants.

The post tells the story of a claimant who was called on their mobile phone by a Jobcentre advisor in the middle of a blood transfusion for a life threatening condition.  Instead of simply offering to call back, the advisor then began demanding that they immediately attend the Jobcentre for a back to work assessment, despite the claimant having lost six pints of blood due to kidney failure.

It is difficult to call for unity between claimants and low paid  (and themselves harassed) Jobcentre staff when claimants face open abuse like this.  But every job has its share of contemptible bastards and part time Jobcentre staff themselves will soon be facing this brutal regime when Universal Credit is introduced.  We will all be benefit scroungers then and…

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By MentalHealthProfessional_CombatingFibromyalgia Posted in Fibro

When 20m doesn’t matter to the #DWP | #DLA #PIP #Spartacus

The recent decision to reduce the length people can walk in order to qualify for the new Personal Independence Payment is quite frankly disgraceful. Even to put a length at all really goes to show how backward human beings are in the understanding of how we move, why, the energies involved, the psychology and behaviours. 

When a condition has not touched someone it almost gives that person an excuse to be ignorant and dismissive.  I’m lucky that this decision doesn’t affect me but I do receive a different kind of support from the DWP and I wouldn’t be able to work without it. 

You see, just because I can walk doesn’t mean to say it’s comfortable. I truly never ever realised how much walking affects the whole body. Starting from the lower back, through all the muscle groups surrounding the spine, rib cage, shoulder blades and neck.  Less affected are the other smaller muscles and arms etc. 

Now that’s just walking; add in to that public transport, pushy people, uneven pavements, weather, baggage, co-ordination, balance, body fatigue, mental anxiety. 

According to the DWP and the government though it’s just your two legs and feet. 

http://wearespartacus.org.uk/tag/pip/

Tug of War | #Fibromylgia #spoonie

Each time I have a break from workImage I end up in a battle with myself.  I don’t have a good relationship with fibro as it is. Despite reading another blog on the positive changes that someone has had as a result of developing fibro I can’t see one thing that it’s made me see differently about.   But then I’d made a lot of    positive changes as a result of long-term mental health issues and was at the peak of health at the time fibro hit me.

The battle I have is that when off work ‘I live with Fibro’ whereas when I’m working and busy ‘Fibro lives with me’.  There is a very distinct difference here for me and that is how much control it has over me.  At home, it annoys me more, affects what I can and cant’t do, during the 9 or so hours I spend in bed at night it makes a very good job of letting me know it’s there.  There is no doubt I can get away from it when working, it does a good job of chasing me, but it doesn’t quite get as close.  Even when I work from home it doesn’t seem to have as much of a hold of me.

For me the importance of working is very clear, although it does help that I like what I do.  I’m very much looking forward to going back on Thursday, I’ve had enough of being at home even though I’ve enjoyed it. I need work as much as work needs me.  

Only one more day to go……

Fog has descended | #fibromylagia #spoonie

A fog descends, all encompassing,
Suffocating and overpowering.
Eyes fair heavy full of sand
Head falls forward, unplanned.

Lost in space
Thoughts are scrambled,
Speech is lost
Completely rambled.

What to do
You cannot know,
There is no place
For fog to go.

Memory loss and disorientation are two of the most challenging symptoms of fibromyalgia. Suddenly not knowing where you are can lead to embarrassment or even panic.  Even more embarrassing is when you try to have a conversation and you have to stop mid-sentence, like instead of a comma, a full-stop has arrived, followed by &%$$^&()+@.  If I could implant a dictionary and thesaurus in my brain I’d could route around finding exactly what I need.

This is what 3 days of Fibro Fog do to you, lets hope it eases…………

365 | 24/7 #fibromyalgia #spoonie

Wishing everyone a very Merry Christmas & a Happy New Year. I always have a quiet time with my hubby and budgie, feet up, watching TV, munching and chlling. We buy things for each other all year round, so presents are not important to us, it’s more about having some time off.

This is my 5th Christmas with fibro/chronic pain. My main job involves mental health, as does my own work that I have done completely for free online since 1998 having had many years of mental health difficulties inc. hospital admissions (including A&E), carers, support staff etc.

Ironically if I had developed fibro in the midst of my mental health difficulties I think I would have crumbled. I had been in recovery for the longest period of time when pain materialised in one area of my body (my hand). What I realise now is that any episode of depression, anxiety, psychosis etc. fluctuated considerably. There were also periods of calm, wellness and contentment. It turns out fibro is the complete opposite, it’s relentless, day in day out, night after night. It truly is a 356, 24/7 pain in the butt and I sit here now with a thumping headache eased slightly with some ice. But, I’m home. I’m enjoying the time off and I’m glad that despite the frustrations I’d built up an element of resilience and mental strength before fibro hit.

I don’t want to think ahead in to 2013 too much, but focus day to day as the best way of getting through this. I’m a great fan of Mindfulness (the here and now) and I’m reading “The Mindfulness Solution to Pain: Step-by-step Techniques for Chronic Pain Management” by Jackie Gardner-Nix and listening to Meditation for Pain Relief: Guided Pratices for Reclaiming Your Body and Your Life by Jon Kabat-Zinn (Author, Narrator who is the man who brought mindfulness into mainstream medicine) .

So, I think I’ll break down 365, 24/7 into manageable chunks and focus on this evening 🙂

Reflection and Rejection #fibromyalgia #spoonie

It comes to the end of December, another year is looming. It seem easier to do reflective practice as part of your work, but when it comes to personal issues, it’s not quiet as simple. I tend to do this as I go along; each month look at different aspects of how the month has gone.

When fibromyalgia is such a big part of your life, I tend to reflect and reject. There are some things I don’t want to think about because quite a bit of it I can’t change, likewise where I have managed to make changes, these have been short-lasting. I find myself in battle with ME a lot of the time, but because work is so much more productive, rewarding, worthwhile and effective I am not against myself. Yet, because I choose to stay working, I pay a big price for doing so, by being unable to do much in my personal life. On balance though, I’d be in the same battle with myself whether I was working or not.

So in many ways I choose to reject reflecting on my year past in how I’ve been and how I’ve felt and take more comfort and interest in what I do in my work and my own sideline at http://www.mentalhealthihntheuk.co.uk.

I will spend most of my time off working away behind the scenes at MHUK and focus on the year ahead in setting up my own business.

It’s not been an easy year, my sleep without doubt has suffered the most and the knock on effect has been increased pain, poor memory and cognitive functioning, forgetfulness and fibro fog. I don’t see the year ahead to be much better in that sense, so I’m hoping my plans that I have for the future will go some way in reducing some of that while still being able to earn a living.

A very Merry Christmas and a Happy New Year to everyone

When ‘sorry’ is the wrong word to say….

THE most important thing above everything else over the festive period is the chance to have some time off, relax, recuperate (as much as possible) and know that a lot of people are also having some time off.  But that’s the problem isn’t it, this is the only time of year when there is the opportunity to give more people time off than at any other time of the year.  Where everyone should be equal.

So I pass a small local Supermarket that has a notice saying;  ‘Sorry we’ll be closed on Boxing Day’.  Why are you saying ‘Sorry’?  Many of the workforce now have no choice but to work on Boxing Day and to work on the 2nd January.  Why?  Why can’t we take this one opportunity once a year for nearly everyone to be equal.  I know we have NHS, Fire, Police, Vets and armed forces etc. working over Christmas and New Year, but I hope at least they are given a chance to take one or the other off for a minimum of two days.

Retail and similar sectors have no excuse, it’s not to help people, it’s just a consumerist society that we now live in. More is more is more is more.  Growth = Prosperity, but does it really?

There is little doubt that we’ll outgrow this planet, that we’ll pillage all its resources and that it’ll pay us back for doing so.

We have more things wrong with us physically and emotionally than we’ve ever had before and yet people are living longer, but not always enduring a good quality of life.  We have more treatments and medicines than ever before, more solutions to problems that actually shouldn’t have been there in the first place.  Why do we think all these things are great to prolong our lives?  The lives we live are quantity over quality and all we can do is say “Sorry”.

By MentalHealthProfessional_CombatingFibromyalgia Posted in Fibro