Are You A 'Loner' or A 'Sharer'?

When you live with any chronic condition there are highs and lows. For me the highs are when my pain is at a manageable level and I can get on with the things I want to do, whether it's mending something in the house, doing a bit of art, blogging or just trawling the internet for a couple of hours. 

These activities provide me with a bit of 'me' time, when I can escape the rigours of family life with only mild pain and life is good. Another 'high' for me is spending time with my wife and daughter - trips to the park or the local museum for my daughter and me, and days out as a family (usually involving shopping - which I abhor, but put up with for the sake of family unity!) as well as cosy nights in front of the TV. These are the things I enjoy during the 'highs'.

But doing these activities during the 'lows', when my pain is riding high,  I find depressing. It's because I'm unable to enjoy them as I normally would. I get that. Because I can't sit still to draw or watch TV, I can't walk (far) without severe pain and I can't focus on anything but the pain. It's depressing for me because I feel I'm letting my family down. It is during the 'lows' that I find myself wishing for solitude.

I'm not really nice to be around when I'm in agony. I do try, really try, not to let it affect my family, but I fail, really fail, at hiding the fact I'm in a 'low'. I don't think my family would, or should, want to be around me - so I pray to be alone. However, I rarely am alone and this makes me depressed - especially if I wake in a 'low' on a day we had planned to do something and we have to cancel - because of me, it's my fault, I'm depriving them of their fun, if it wasn't for me they'd be able to get on with it - that sort of depressed, that sort of feeling of 'if I was alone I wouldn't be letting anybody down.' 

So I've reached the conclusion that, essentially, and because I'm in unmanageable pain for probably 75% of the time, I am a 'Loner.' I hate 'sharing' the 75% of my life.

My wife is the opposite. My wife hates to be alone when she's suffering with her ME. She loves to share her pain and fatigue symptoms with us and explain how she's feeling at every given opportunity. I find that odd and, at times, profoundly irritating and yet it is also endearing and intriguing. Being polar opposites I find makes me want to be more like her. I could never go in to as much detail about my level of pain with her as she does about hers to me but, sometimes, I wish I could unburden myself like that. Case in point: I hold back on everything I'm feeling when talking to my GP - and because of my reticence to share the finer details, he is confused about how best to treat me and I no sooner sit down in front of him than I'm walking out of the door. My wife's appointments last a minimum of fifteen minutes. My wife definitely likes to 'Share' it all!!

So, what about you? Are you a 'Loner' or a 'Sharer'?

(This post was originally shared at MyFibroBlog)
  

N:rem Sleep System - My Sleep Aid Trial Review

PLEASE NOTE: THIS IS NOT A "PAID FOR" REVIEW. The thoughts and experiences outlined in this product review are an accurate and genuine reflection of my experience using the N:rem Sleep System and have not been influenced in any way.

Like many sufferers of fibromyalgia I haven't had a really good night's sleep for many, many years. Even before I was diagnosed my fitful sleep would annoy my wife and keep her awake - which resulted in lots of odd bruises on my shins and arms! My wife described sleeping with me as "like sleeping with someone in the throes of a never ending epilectic seizure!"

It got so bad that most nights saw me banished to the spare bed where I could thrash and gurgle and snore and talk and shout and kick and moan to my hearts content. But of course I wasn't content and sleeping like that certainly took it's toll on my health and my marriage.

In the early days it was simply a matter of me being unaware of what I did in my sleep - I don't remember doing any of the things my wife told me I did -  but I do remember how incredibly tired I was, even after a full night's sleep - which for me meant about five or six hours, max. More recently it hasn't simply been the things I do in my sleep, I've had the extra burden of chronic pain keeping me from getting to sleep or waking me during the night, all of which adds up to a whole mess of exhaustion and irritability and stress - and with the stress comes the added pleasure of anxiety at bedtime - 'Will I get to sleep?' 'What if my pain wakes me again?' and so on. It's a vicious cycle.

Living with a chronic pain condition is bad enough in itself. Getting through the days is exhausting and when the nights offer no respite from the pain it's easily understandable how some fibromyalgia 'victims' become depressed to the point of almost being suicidal.

Over the years I have tried so many different sleep aid products - none of which have ever worked. From large quantities of alcohol to anti-snoring strips to specialist pillows and mattresses, I've spent a fortune trying, and failing, to get a good night's sleep.

So when I received an email via the FibroMen website from a company asking me to trial  their 'Sleep System' I was sceptical to say the least, but I've tried almost everything else on the market, so why not give their 'free trial' a go?

The very next day my trial product arrived at my door! A big black box stuffed with five single bed width foam 'toppers' of different densities and colours  (2 x super soft and 1 each of soft, medium and firm ) designed to be placed on top of my existing mattress in a configuration suited to my particular conditions - hip pain and lower back pain.
 
And so began my ten day trial of the product that claimed to provide sound, restorative, deep sleep to chronic pain sufferers like me.

Setting the bed up was really easy - even for me - simply place the colour coded, different densities of foam tablet down the length of your bed in the configuration best suited to your pain areas. The leaflet that came with the product provided three options for back pain, lower back pain and hip pain. For my first night I used the lower back pain configuration.

The first night provided me with a decent night's sleep (for me) only waking twice but with some discomfort from my hip pain - the tablet 'toppers' were configured for lower back pain so I suppose that was to be expected and quite normal for me. I did get a feel of the differing densities of foam but overall it was a good night's sleep. The next day I found myself moving around quite freely - feeling almost sprightly. The third night provided me with the most comfortable night's sleep I'd had for many years and left me really positive, but I changed the configuration of the tablets to one designed to help with hip pain for night four and it wasn't a good move - I woke several times with severe lower back pain and (surprisingly!) some pain in my hip and that left me quite despondent. For night five I switched to the configuration for general back pain and it's been that way since - for a reason:

For me the configuration for general back pain has provided me with the best sleep I've had in years!

I still have pain during the day. This sleep system is not a cure for fibromyalgia - but it doesn't claim to be. This sleep system has worked for me in two ways

1. I no longer wake during the night in absolute agony, and
2. I no longer wake during the night FULL STOP!

I can go to bed at midnight and not wake up until my alarm clock goes off six, seven, eight - even nine hours later - I've NEVER been able to do that.

I can go to bed in absolute agony and still fall asleep quite quickly - because the mattress is now so comfortable - and not wake once during the night because of my pain.

When I wake my pain is still there but I don't notice it so much as it's not as bad as it has been in the morning, and getting out of bed is no longer the arduous task it was two weeks ago. As I go through each day I feel my pain building to the point it was at before the trial but I feel so much more able to bear with it knowing that when I go to bed I'm going to get some respite from it.

The absolute beauty of this sleep system is the fact that you can configure the foam tablets in whatever way gives you most comfort and relief. I had a couple of nights where I got it wrong, but it was easily fixed the next day and I know that if the current layout stops working I can have a go at shuffling the tablets to find the right comfort level for me. Quite simply it's brilliant!

So, overall, the sleep system has worked for me and I'm so thankful that Elise from N:rem - the company behind the system - contacted me.

I do have one note of caution to those thinking of investing in the system - and it is an investment because the system doesn't come cheaply - use the free trial first. 

What works for one doesn't necessarily work for another - we all know this to be a fact with fibromyalgia! If you use the trial and find it helps you then, if you can afford to, buy the system. From my experience with the company, and from reading the reviews on their site (and other review sites) their customer service is first class and there are options to enable you to afford the full system if you're on a limited budget. Take a look at their site and decide for yourself, but I have no hesitation, based on my trial, in recommending the benefits of the N:rem Sleep System. 

Sleep Aid Trial - Where to find the latest updates

You may know that I'm in the middle of trialing a sleep aid that claims to significanlty improve the sleeping patterns of fibromyalgia patients by providing comfort, pain relief and deep restorative sleep.

I'm on night three of seven or ten nights using the product.

You can follow my progress on the FibroMen YouTube Channel or on the MyFibro Blog.

Thanks

I'm Trialing A New Sleep System for Fibromyalgia Patients

The system is designed to relieve some of the poor sleep quality - insomnia, restless and non-restorative sleep and sleep distrubance through pain that some fibromyalgia victims suffer (myself included - I haven't had a decent night's sleep for many, many moons so I'm really hoping that this gives me some relief!)

I'll be vlogging about the trial this week so watch the videos I post each day on how good, or bad, my sleep has been - and keep your fingers firmly crossed for me!

If you have any issues with my accent - I can set up subtitles or provide you with a guide to Yorkshire Folk Lingo!!