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…..

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

Why talking about sleep is maybe not a good idea. #fibromyalgia

So, I started on the theme of sleep. And then last night I had the worst sleep I’ve had for a long time.  Further exacerbated by my acute hearing so that every little sound woke me and I shoved ear plugs in my ears at 4am. I’m also on annual leave in 4 weeks time and the closer it gets, the more tired I am as it is further and further away of when I last had time off. 

Sleep must help tonight, otherwise I’m good for nothing tomorrow. Night x

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Fibromyalgia & Sleep (#fibromyalgia)

I was going to write something else this evening, but then I was going to write something yesterday too. That’s often the case with fibro, everything is unpredictable.  I was browsing my usual inbox of health notifications at work and an aptly titled “It’s a fact – lack of sleep affects your work rate” appeared.   Now it’s not new to us fibro lot that poor sleep is the bane of our lives. I never for the life of me appreciated how much lack of sleep affects so many parts of your body. If you think it’s just your brain that gets a raw deal, think again.

After a poor nights sleep you feel pain multiple times more extreme, your eyes start burning before it’s even midday. Headaches pound your temples and the back of your eyes. Fibro fog descends so low that it reaches your ankles. With only your feet for guidance you’re walking on ice as a learner skater where your balance is tested to its limits. Somehow you stay upright, but by the time an hour has passed, every muscle in your body aches. Then lightening strikes from the sky and slices through your neck and you feel your eye has shattered, but it’s still there trying to focus on fresh air.

By the end of the day as all these processes have occurred multiple times along with all the little ones that I take for granted. It’s evening, it’s after work and only a few hours to chill before bed. You’re already starting to fall asleep… ironic really, because you long and die for sleep, but it’s impossible.  Even if you sleep on and off, restless legs will bug you all night. The urgency to constantly moves means you could run a marathon in the night.

Despite all this, I refuse to let this stop me working effectively and efficiently. I’m sure there are jobs I would not be suited to due to how fibro affects me but I will not be dedicated to by a condition I hate. I think that is partly what drives me, but I have had to make sacrifices. I start at 10am and finish at 6pm. I split my lunch break in to several smaller chunks. I use Access to Work for travel so that my pain and fatigue is reduced.

So, no, my work rate is not affected, but only because I do things to minimise it. Whether this is sustainable is another thing entirely…

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