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)
  

Back Pain - Sudden Worsening

Last night I laid on my front on the rug in front of the fire watching TV, in an attempt to soothe my aching back, which has been plaguing me for many many months. I laid propped up on my elbows for about five minutes. My lower back pain did not diminish so I attempted to sit up and back into my armchair. I only just made it to the chair before the most excruciating pain hit my lower back. So intense was the pain that I could not move, in any direction, for what seemed like an eternity. It was as though my entire lower back had seized, or gone into spasm.

I have to admit that I panicked a lot. For a good hour it took all of my strength to move. I managed to stand, but walking was incredibly painful and bending was simply impossible, no matter how hard I tried I just couldn't get any movement without horrendous pain. My wife suggested a trip to A&E, but I hate going there so I struggled on through the night. It eased quite a lot when I went to bed, but it (and my usual nighttime nemesis - hip pain) woke me around 3am.

This morning the pain was still intense but I'd got some movement back and I managed to take my Daughter to school, albeit in relative discomfort. On my return home Mr Postman had delivered a package from Amazon - my digital TENS machine. It could not have come at a better time!

I quickly unpacked it and set it up to give my lower back a good session. The relief was almost instant.

I'd used a TENS machine a while back, but I wasn't anywhere near as bad with my back then, and it didn't seem to have much effect. But, after reading several reviews I decided to give it another go. It's early days, but I'm very impressed how it sorted out my spasming back.

I'll let you know how I get on over the next few days.

The Simple Task.

I was left with just one task to complete before my wife returned from work today. I'd woken feeling refreshed and vibrant for a change, capable of anything.

It was meant to be a five minute job. Take down the old shower curtain and hang the new one. Twelve hooks to unclip, remove from the old curtain and attach to the new one, then rehang on the rail.

Dead easy. Dead wrong!

The pain in my back intensified as I reached up to unclip the hooks from the rail - but there's always pain in my back. I could cope with a little more for the short time this was going to take.

After unclipping three of the twelve hooks from the rail I began to get intense cramping in the thenar eminence (the fleshy part of the thumb where it merges into the palm) like I'd been squeezing a rubber ball for hours, or gripping on to a rope. Only nine more of the little buggers to unclip. Perhaps if I stood on a footstool so that my hands were level with the rail it wouldn't hurt so much. I fetched a stool which didn't quite give me the height I needed, but made things marginally easier on my hands. Three. Four. Five. By the sixth hook I had to stop. My thumbs throbbed and I simply couldn't apply enough pressure to unclip them from the rail.  Hooks seven to twelve took a further thirty minutes to unclip - I had to rest my hands for five minutes between each one. 

Now came the task of removing the hooks from the old curtain. Fiddly little things coming off and fiddly little things going on to the new curtain. Another half an hour. More painful throbbing in my hands. Thankfully it didn't last too long, after a short while the cramping diluted to a dull throb and then only hurt if I touched it - like a bruise. 

The pain has gone completely now, but it's got me thinking about how this terrible affliction is affecting my day to day life. Simple tasks, which I'd once do without even thinking, now have to be meticulously planned around the expected pain - allowing for it in terms of time taken to complete and having all I might need to hand so I don't have to go searching for stuff and, of course, in true British worker fashion, having lots of rest breaks and copious quantities of tea!

Today's task was so simple, I hadn't even thought how difficult it would be. For such a simple task to have such an effect on my body concerned me greatly. How much further will this illness take me. My doctor advises that there is no cure and that it will get progressively worse, but the rate of progression is quickening and I'm worried that I won't be able to do anything at all in just a few years. Fibromyalgia might not be a life-limiting illness, but I certainly discovered today that it's an 'ability-limiting' one.

Smoking.

For 34 of my 49 years I have been a smoker (49-34 = 15, yes, I was fifteen when I started!)

Apart from one period of eleven months in 2012 when I made a serious attempt to quit, I have smoked at least twenty per day, sometime upwards of 25.

I considered myself a hardened, dyed-in-the-wool smoker. I resisted every attempt to get me to quit. My wife (who's never smoked) and daughter have begged me, bullied me and bribed me to stop smoking. I never would. I could never see myself as a non-smoker. From the age of about twenty-five I made several half-hearted attempts to stop using every method known to man - self-hynosis, gum, patches, willpower, tablets, nicotine lozenges, electric cigs - you name it I've tried it. Nothing worked.

Last October, for my 49th birthday I tried a new electronic cigarette (not for the first time) One with a battery and detachable 'tank' which you fill with nicotine liquid and 'vape' through. I bought it as a smoker with no intention of quitting - I just felt the need to cut down because of the cash implications smoking has as well as the health ones. I gave myself a bit of advice - "Try not to smoke, try to use this instead, but really try." I expected nothing from myself other than I would try.

And try I have. Okay, so I use the highest strength of nicotine 'juice' I can find and yes, it very rarely leaves my lips, but my electronic cigarette has replaced real cigarettes in all but one aspect of my life - work. At work I manage to get through five cigarettes in a week - I enjoy a ciggie in my breaks - which is a vast improvement on my former smoking self when I would smoke twenty plus PER DAY. I'm incredibly proud of myself for coming this far.

I know there are those out there who will say "But you haven't quit completely." and they'd be right, I haven't. But it was never my intention to quit - which is what differentiates this attempt from other attempts to quit fully. The fact I'm allowing myself the occasional smoke at work has made it easier to carry on, rather than stopping altogether and making myself feel 'deprived' In the past I wouldn't have dreamt of going to bed without knowing there were enough cigarettes to see me through the morning of the next day. Now I can go to bed, wake up, get through the full day, go back to bed without ever smoking one solitary cigarette. They rarely cross my mind. If I don't have any I'm no longer the raving maniac I once was. By trying I've found I can live without them - at least when I'm not at work. That challenge is another bridge to cross when I get to it, but I'm sure that I'll get there soon as the ones I am still smoking aren't enjoyable in the slightest - in fact they taste rank.

Surely they haven't always tasted this vile..........????

Why did I ever start?