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 🙂

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…..

“Must do better”, People in pain fail to manage their condition (From The Northern Echo).

People in pain fail to manage their condition (From the Northern Echo Newspaper).

Then again, chronic pain is chronic pain. You just gotta live with it. There’s a love hate relationship with it, I must admit more hate than love. I don’t see any point in speaking or seeking help from people who have no idea what it’s like to live with chronic pain. If someone I was speaking to had been there then fine, but I can see why people don’t seek help and support.

Fibro Baggage (#fibromyalgia)

I was going to post last night, but the mother of all headaches arrived at 4pm. I left work after 6 and just wanted to switch my head off. It then got me thinking about all the other junk that comes with fibromyalgia. It got me thinking about all the various specialists I’ve seen. Then it made me realise how so disjointed they all are, I don’t feel they do this on purpose, I just know that they don’t fully understand that fibromyalgia is more than what it’s described as.

I attended the chronic pain service and they focused on pain.
I attended the dental clinic and they focused on my dry mouth and TMD.
I attended dermatology and they focused on my prurigo, dry skin and adult acne.
I attended the optician and they focused on my dry eyes and blurred vision.
I attended neurology and they focused on my neuropathic pain.
I attended the lymphodema clinic and they focused on the swelling in my left arm and hand.
I attended orthopaedics and they focused on my bone scan which showed ostopenia.
I’ve attended various other complementary places and continue to see my GP for my prescriptions. I also found out by pure luck that I was severely lacking in Vitamin D.

Despite all this, which kinda looks a bit desperate, not one of them communicated with each other, not one of them asked about the other people I’d seen. They made no references or even considered linking them together. When it came to treatment they were all considered individually. This meant that when it came to suggesting management ideas there wasn’t a hope in hell they were going to work the same way as just treating one symptom or condition.

This was the point where I knew there were no services that could support and help me. I’ve not bothered seeing anyone other than my GP for a while now. My symptoms bother me a great deal, artificially supported by medication, pain patches, ice packs and Mindfulness. I accept that that is the way it is, but it doesn’t mean I accept it should be this way. The one biggest problem in medical care today is communication and yet we have pretty much instant communication technologies.

There are no answers to fibromyalgia, I know that, but it’s very odd to try and help someone with this condition if you deal with all the symptoms separately and it makes me feel a time waster.

No wonder this condition is so isolating.