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 ūüôā

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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…..

“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.

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…..

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

I never tire coming to the Highlands twice a year. Neither of us own passports and haven’t done for over 20 years. ¬†In fact my husband has never had a passport so isn’t even bothered. ¬†We’ve never once wished we weren’t here. The more recent problems of caravan holidays have been overcome by taking the right comfort padding! Unfortunately my husband has had to give up a lot, but I too miss what we used to do.

We have a lovely tent with all the additional extras.

We have a bike each that we used to take for    mountain biking, sometimes covering as much as 30 miles in one day.  Just before I became unable to take these with us on holiday we had bought a new bike carrier with number plate and had a tow bar fitted to the car.

We’ve done many long mountain walks in breathtaking Scottish scenery.

Long drives have become shorter as a tire more easily. These photos instill many happy memories and there so many people who develop fibromyalgia early in their lives who won’t have had these chances or opportunities.

The day we arrived it was a beautiful evening; very classic of the Highlands. Most of the stuff we bring is pre-packed, and as we always come to the same place we unpack like the same jigsaw done every day. Everything has its place.

The bed is always my worst nightmare and true to form I woke up on Sunday having pulled a muscle in my shoulder and neck. These areas are bad enough without making them worse so I was increasingly restricted for several days. I find driving quite difficult but as I have a good discipline of using all mirrors I’m generally OK.¬† There are exceptions of course and this was one of them!

Never mind, it did pass. Poor sleep remained throughout the rest of the holiday, cramp in the legs, burning in my heals, restless legs and being unable to find a position that brought any decent sleep. The bonus is though that it didn’t matter because the days were our own.

Going back to work is always hard, but as there is no difference in wellbeing on any 365 day there is nothing to gain by being off.

So, what does this holiday and all the other holidays past and present do? It gives me quality time with my husband, laughs with our budgie, the most amazing wildlife, catching up with lots of books and films and most of all peace and quiet.

I’d swap this life for anything, it’s so good for you, the air is like nothing on earth and makes coping with fibromyalgia easier.

Maybe one day…..

Fibro planning (#fibromyalgia)

I can’t believe how fast time has flown by in the last few weeks. Planning my holiday starts early, I had bags etc. out two weeks ago and each day I’ve done a little bit of packing. Now that it’s nearly time to go I’m nearly done. Here am I saying ‘I’, but in reality there is two of us, actually three if you include our wee budgie ūüôā My experience of men and packing definitely doesn’t go well, and he’s great at so much of the other stuff I don’t mind. If I let him pack we’d need a lorry!

As luck would have it, it’s always been in my nature to be really organised and now that I have Fibromyalgia it’s good that I am as most things need to be planned well ahead. The unpredictability alone is a real pain in the ass and you always find you do more on your good days to compensate for the bad.

As I get the final bits done before we leave on Saturday, I’m aware that an appointment will be in the post for a lumbar MRI on my return. Having significant numbness etc. has resulted in my GP wanting to have it checked out. As most other investigations have come back normal I’m not unduly worried, but you never really know….

#Fibromyalgia and holidays

It’s that time of year again. I’ve been holidaying in the Highlands with my husband for over 20 years and I never tire each time I think about going back. We started with camping for several years, before managing to find various static caravans in people’s gardens. Around 10 years ago I found a lovely spot for us, again in someone’s garden but much more isolated and peaceful.¬†

There have been times when we’ve done nothing but hike up mountains and munros.¬† Then we spent a good number of years taking our mountain bikes, cycling some of the most amazing forest tracks and observing the most beautiful wild creatures of Scotland.

Now my highland holiday is a chance to recuperate, rest, switch off and chill. It’s not without its problems. It’s not the most comfortable holiday, the bed is uncomfortable for me and I can’t sit in the same position for too long.¬† But, to be honest, it’s no different at home. I take some extra pillows, a blanket, a heat pad and extra pain relief. I know no matter how much pain and discomfort I’ll be in, it won’t really matter. I can still rest, I’m on holiday from work, I can take as much time as I like to do things and if we make plans they can easily be changed.

Holidays are needed no matter what situation you are in because you are giving yourself a chance to be somewhere else; in body, mind and spirit.

Fibro doesn’t like to be on its own! #fibromyalgia

I was just pondering after putting up the photos I’d taken to reflect what Fibro means to me. ¬†Fibro likes to have friends, it doesn’t like to be on its own, I think it likes something to battle with. ¬†Many of us with Fibro will have other conditions that make the battle with Fibro all the more harder to cope with. ¬†Some are quite minor, some are very variable and others stick like best friends to Fibro.

After mentioning TMD in one of my posts, it was interesting to read others who also experience this. ¬†For me TMD was one of the first symptoms I had. ¬†I didn’t have any muscle, pain or discomfort at the time and I was also running a lot. ¬†I know when I was running I was clenching my jaw quite a lot, so it came as no surprise. ¬†It also didn’t faze me that much because at the time that was all I had to deal with. ¬†I got one of the spongy teeth guards when it turned out I had cracked one of my molars. ¬†That was ok.

But it wasn’t, because then other ‘things’ started to occur. ¬†The next was swelling, pain and numbness in my left hand and arm. ¬†Then neck pain, shoulder pain. ¬†Dry mouth, eyes and skin problems occurred I was then diagnosed with Sjogren’s Syndrome, but not until I’d been to the dental hospital, eye clinic and lastly dermatology.

In the middle of all this Fibro/Chronic Pain was mentioned and due to sleep problems I experience Chronic Fatigue.

Lastly, I have one condition that is not associated with Fibro but for some reason is assumed to be connected and that is Lymphoedema. ¬† Classically with this condition you are not meant to experience pain and yet in my left hand/arm/shoulder where the swelling is I have pain. ¬†The clinic separated this and said that they couldn’t be connected. ¬†So I am no further forward in understanding where this has come from, why it’s around and what I can do about it. ¬†I initially tried some lymphoedema sleeves and although they brought down the swelling I couldn’t continue to wear them because of the pain.

At the moment with the heat, I go to bed with a cool pack from the freezer which I lie my left arm on, as the hotter it gets the more uncomfortable it feels. I paid ¬£40 to have my rings resized, but at least I can now where them again. ¬†I’d been wearing them on my necklace for a while.

So, Fibro, I know you don’t like to be on your own, but I do wish you’d sometimes leave me alone! ¬† Wishful thinking.

Night x

#Fibromyalgia Captured Pictures

It’s been a busy time since I last posted. ¬†I’ve a lot going on at work and as I’m going away to the Highlands to switch off for a fortnight, it’s even busier finishing everything I need to do before I go away. ¬† I always panic that I’ve forgotten something to do. ¬†Those with Fibro will understand that memory is a real problem and I have continual lists on the go, memory prompts, and notes all over the place. ¬†But what I really wanted to do with this post is display in pictures what my Fibro life is like. ¬† So here it is.

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.

TMJ/TMD & Sleep (#fibromyalgia)

 

I actually did have a better sleep last night, with ear plugs that stayed in and several wakes up with pain instead of many.  Some people say that with Fibromyalgia their pain is reduced during the night.  I find it makes little difference and can have very painful nights.

I bought a mattress topper a while ago, which has helped and a sleep body pillow. ¬†I’ve been through about 5 different head pillows and go from chucking it on the floor to using it for a a few hours before chucking it back on the floor again!.

And….then there’s the issue of TMD/TMJ, something I know many will identify with. ¬†This started for me during my running year in 2007, just before any other problem started. ¬† At first I had no idea why I was waking up with a sore jaw and headaches. ¬†A regular visit to the dentist revealed it when he pressed on the upper muscles in my mouth. ¬†Ahhhhh.

At first I got by with a spongy rubbery tooth-guard after cracking a molar and I persevered with this for about 2 years. ¬†Then a visit to my Osteopath revealed a new type of product called an NTI Splint. ¬†After finding a dentist¬†that specialised in these, ¬†I decided to go ahead with it. ¬†It wasn’t cheap, so I paid it up over a few months and this is what it looks like.

It’s supposed to last about a year, but 6 months in and I’d already calved a significant groove in it. ¬†So I went back for some modifications. ¬†The reduction in jaw pain is incredible, and the headaches I do get I know are not related to TMD. ¬†It’s now becoming apparent I need a replacement, but it’ll have to wait until I get some extra cash together. ¬†This is going to have to be a regular expense for me, but a very worthwhile one. ¬†I just hope as it becomes a norm for TMD the price comes down.

I just wanted to thank those who have started to engage with me on wordpress. ¬†It’s something I had been considering doing for a while, but I do so much other stuff online I wondered if I would ever find the time…. and then I found I could post from a variety of devices. ¬†So that’s made things a little easier when I can’t be bothered to put my laptop on.