A new journey….

I had meant to write this a few days ago, but as usual, with so much to do, it ended up forgotten about.  I wanted to write this as soon as I had started by course I thought I’d better get on with it!

Anyway, it’s a new chapter for me.  I had mulled over doing some professional development for a while.  I already do a fair amount of self-study.  My brain likes it that way, even if it often interrupted with fibro fog.  There is little doubt that it’s a good distraction from chronic pain and I really love learning. (Watch my teachers faint if they ever heard wind of that!)  I do feel at times that I am making up for lost time and it’s probably true.  Despite my better efforts in my younger years it wasn’t until my 30’s that I caught up with myself.

So, I’ve decided to study a CIPD Foundation Certificate in Learning & Development.  It fits best with where I’m currently headed career-wise.  It’s going to help me grow my confidence and it’ll give me a valuable qualification that will help me to develop my business where my target audience is private/public sector businesses.

So, having registered a while ago, I officially start this week.  Most of it is open-learning with 2 two-day workshops in either Birmingham or London.  It’s very flexible and having looked at my study plan given to me by my tutor it looks great.

I started this particular blog on the back of a conversation on a Freelance Trainers Facebook Group that I’m part of.  I was asking if anybody else had done this course and someone wanted to know what it was like too.  So I suggested that maybe I should write about how I get on.

So, here it starts……………….

#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

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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. 

 

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 you can’t give it up #fibromyalgia #spoonie

There was a funny post on Facebook today which sums up a lot of us who persevere with long-term conditions.  This is via www.butyoudontlooksick.com; “Googling your symptoms when you don’t feel well is the most efficient way to convince yourself you’re dying”.   But you know what, most of us are not being stupid or silly.  At time we’re just a little bit desperate to find our more, but for me it’s usually about seeing if there is anything ‘new’ in the pipeline to help deal with and manage the condition.

There is the good side and bad side to searching on the internet, but as I have been online for many years, my knowledge and understanding has meant that I know what to look for and stick to the right sites that give me the right information.  In many was this makes is a bit more frustrating, because the reality is that with this condition all you can do is try to manage it.  There is no miracle cure, no miracle treatments, no miracle gadgets.

What I did find though is a treatment called Tamars which stands for Technology Assisted Mobilisation And Reflex Stimulation and is a hand-held device that delivers treatment to ensure the spine is functioning as close as possible to its optimal level.  I wasn’t going to expect a cure with this, but as I have scoliosis I thought it might help a little.   I also received the results back from the MRI I had on my lumbar spine and with another two disc bulges to add to the one in my neck it is certainly worth a go.

I’ve had 3 treatments so far, and it’s certainly painful, but if I can feel a bit more comfy I’d be happy with that.  The number of treatment is usually 6, so we’ll see how it goes.

Work has been extremely busy and my sleep has been poor, but I’m plodding on.   I’ve been attending some of the Business Gateway seminars for my new venture MHScot Consultancy and it’s going well.  I’m just doing a little bit at a time before registering with HMRC and finalising my Business Plan.  I’m spending a few hours each weekend working on the Training Pack that I’m developing for workplace mental health and it’s keeping me motivated.  I have always pushed myself to try to achieve the best I can, and despite all this, if I see something coming together it’s taking my mind off my symptoms and at times keeping me awake!  I started watching a training video and by just sitting there, I found myself nodding off.  As soon as I start to actively do something it stops me falling asleep.

Till next time…..

People and #fibromyalgia

I think I’ll side step the sleep issue today. I will confirm though that my helper Melatonin has helped these past few nights, which is a blessing but still leaves me a tad groggy.

So, these last few weeks have been challenging, but when I think about it, the last 5 years of this condition have been challenging too. There’s one big factor that doesn’t bode well with conditions which leave you tired, exhausted, frustrated and fog brained.

Now more than ever I’ve found people in todays’ world less tolerant, less patient, less appreciative, less understanding, less willing to listen ‘properly’, more selfish, more self-opinionated, more egotistical and living in a self-contained bubble. There is never a day goes by where I come across people behaving in this way.

But not all is lost, I have people/pets around me who I love dearly, who do care, who in many ways see what I see changing in this world, who know, like me, to leave these people in their worlds. We know these people must be so shallow, so desperate to live by other people’s standards, desperate to be admired and looked up to. It’ll never stop for them because unlike some of us who are happy with our lot (well nearly, LOL), they have to keep behaving like that because it’s a drug. If they don’t get what they need from others then they fall apart.

So, while it’s a factor that doesn’t bode well because it’s just another added ‘thing’ to deal with, it is one we can let go of as soon as we close that front door at night.  It’s not something they can.

I can then be left to focus on me and my needs and my determination to try and get back in to a routine of mindfulness.

Another Melatonin tonight I’ve got a lot of sleep to catch up on.

Repeat, repeat, repeat….. #fibromyalgia

I feel like a broken record, yet again sleep remains my utmost problem. Comfort remains elusive, I toss round one side, toss the other, legs back, legs forward, arms up, arms down, face forward, like on back, move to side, lie arm out of bed, crunch and swell hand by sleeping on it and so it goes on. Now I have burning heels, like fire exploding from within.

It’s never comfortable yet I go to work on auto-pilot. I am good at what I do and I don’t want to jeopardise that. Maybe I can learn to live on less sleep, who knows…..

There was a time…. #fibromyalgia

There was a time when I could give my all online, as a very early adopter of technology and the internet I lived and breathed it. Now all I do is work all the hours God sends for nothing but exhaustion, frustration, isolation, and lack of appreciation. Why do we as a country have these stupid long hours, crap pay, rubbish pensions, and no such thing as retirement anymore.

I dunno, I give up. Most of these new health initiatives are just talk, show off and no action. Paper documents come out, research papers, fancy expensive meetings and wasted money.

We have all this technology and we’re no further forward. 

Live to work and not much else #fibromyalgia

It’s the weekend, time for a bit of catching up online with my own site/community/FB/Twitter than I run and have done for many many years now.  I’m also working on a plan over next year or so to try and set up my own consultancy business.  It means that I can go self-employed and create a mental and physical wellbeing balance that I know I will never be able to replicate in mainstream employment.

I actually don’t believe workplaces will ever address the barriers and stigma that face physical and mental wellbeing in my life time.  We are getting there, but the power of many is often offset by the shear ignorance of a few who on balance can really mess things up.

I work in mental health and I’d say that although my workplace has been very accommodating, my previous employers weren’t and likewise many people who I have spoken to who work in mental health are dealt with dreadfully.  The facade put on by businesses/orgs/companies hides a very painful and shocking underground agenda of bullying, discrimination and self-importance.  As individuals we are fighting for every position we can to heat, feed, clothe and put a roof over our heads.  Who are we kidding when jobs are on the line that everything will be dealt with according to laws, policies and rules. 

I’m also fed up with people.  I don’t fit in with most people; I don’t have the same opinions, values and principles.  Everywhere around me, people talk about issues and topics and 70% of the time I don’t see things the same way. If I could live on an Island with my husband, I would!  But then I am overly sensitive to external stimulation and most things bug me. 

I’ve waffled today, but actually what I was really going to write about was Income Protection.  After nearly a year of looking I decided to make the move and call a broker to look in to Income Protection for me.  I know I needed more specialised advise as I have a pre-existing condition.  I suspect it may be quite difficult to find something and my premiums will be more per month, but that’s something I am prepared to pay for.  I’ve included redundancy in it too as I went through this process just last year and it was so stressful I’d want to make sure that should I be in that position again, I’d at least have something to live off while looking for other work.

I await the result of my MRI scan, hopefully no intervention is needed, but I try every day to do my exercises, to keep as supple as possible, to reduce the cramps, burning, aching and swelling.  I never thought I’d be in this position and now that I am I’ve just got to get on with it.

Lastly, for you mttop72, I’m looking for a lovely Scottish Scenery photo that’ll I’ll put up asap.

xxx

When things go wrong…. #fibromyalgia

Not hugely wrong, but just not what you need when you come back from holiday.  My memory failed me when I assumed I would remember, but I thought it would still work out OK, it didn’t!  I was meant to collect one of my prescriptions on Saturday, and when I forgot I checked to see how much I had left. Enough till Monday so didn’t worry too much. Popped down to my local chemist before work but found it was closed. Thought it was a bit odd, so went to ask in the Post Office. Apparently it was a local holiday and because I’d been away I didn’t know.

At that point I really had no other options, so used my PRN medication to tide me through the day. By the time evening came, I was a little more uncomfortable than usual, but worse was yet to come. I went to bed at my usual time of 10pm, and that was it. Barely any sleep came; I tossed and turned, too hot then too cold. Exhausted by 7am, feeling quite unwell, shivery, tired, sore eyes I got up and had a shower. I went back down to the chemist I got my prescription and immediately took  my first dose. I took my second as usual at lunch time and by about 2pm started to feel a lot better. I was completely knackered, but at least I didn’t feel so unwell. Unfortunately i had to go and have my MRI at 6.30pm, but once that was over I went home and had a much better sleep.

I always struggle with sleep, but at least I get some.  Having none is so much worse. 

I’ve had a very busy week back at work as we are moving offices and the first week back after a holiday is always tiring. As I work from home on a Friday today is really my last day which is quite nice.

We’ve had so many changes and uncertainties in the 3 years that I’ve been there.  I’m hoping this will be a new start with more stability and accountability as people too long in the tooth move on and new more experienced people come in. I never want to experience that again, so here’s hoping.

Night xxx