Being Overwhelmed

Overwhelmed is a word I used to associate with joy - "I'm overwhelmed to meet you!", "Your beauty overwhelms me!" I've never thought of it in the context of being overwhelmed by an illness. But that's how I've been feeling for a while now.

My illness is overwhelming me. I feel like it's beginning to become me, to define who I am, and I don't like it one bit.

I'm determined to not let fibromyalgia become me. Like some creeping algae slowly enveloping me in its insidious green slime. So far it's taken over so many aspects of my life - work, social, family. 

There's so much of the life I once knew that is now stagnated by fibromyalgia. I'm no longer able to plan anything with any certainty, family outings have to be decided on the day and can end abruptly half way through an activity, work has been reduced to just 16 hours a week - and still I have to call in sick some days, and my social life ended about four years ago.

Accepting you have an illness and accepting the limitations that illness places upon you is one thing, but allowing the illness to define who you are is an entirely different kettle of fish, and it's something I don't want on my epitaph - "Here Lies That Guy with Fibro."

I suppose I'm going to have to get myself a new mindset to accomplish this feat. I definitely need a shot of positivity to begin with, so I'm throwing this out there to ask:

"How do you keep yourself from being overwhelmed by your illness?"

"How do you stop yourself from becoming your illness?

 Answers on a postcard to.... or you can just post a comment!

All suggestions will be considered seriously.

   

Taking the Rough with The Rough.

I had a colleague come up to me at work the other day and say "You look rough!"

I was shocked. Struck dumb by the fact that someone had noticed I looked ill. Usually people tell me how well I look! I had no response to give her except my stock response of "Oh, I'm not so bad!" Nothing could be further from the truth. On top of my daily struggle with persistent lower back and hip pain, IBS and toe pain (yes, toe pain - new one on me!!) I seem to have contracted the dreaded influenza that has been doing the rounds for the past few weeks. Everyone at work has had it, my wife actually collapsed whilst serving a customer last week because of it, my daughter got it late last week and now it's found me.

When I get struck by flu (or even just a mild cold) it magnifies all of my other symptoms. My famously disreputable bowels become even more disreputable, my chronic pain - which is welded at six or seven, somehow unwelds itself and hikes it's way up to an eight or nine, add to that a sprinking of nasal congestion tasting like one of my bowel movements, shivers, being boiling hot and then freezing cold, sweating, headache, blocked nose, runny nose, sore throat and a raucous chesty cough and you have the perfect recipe for feeling really, really ill!!.

Being acutely ill whilst at the same time battling being chronically ill is what really makes a rough life rougher - but it has its benefits. Most notable of which is actually looking ill.

How Do I Develop A Coping Strategy?

When my pain reaches a level where I feel like I might die from it - or sometimes wish I would die just to stop it - I find it very difficult to think positively about my condition. Anyone in constant pain for thirteen years must surely, eventually, come to terms with it and learn to live with it. Not necessarily 'cope' with it, but live with it.

I haven't. I want to alter the way I am. I want to reverse it, go back to the days when I wasn't in agony when someone touched me, the days when I could sit and watch TV comfortably, lift heavy gear at work, climb mountains, kayak in the lake district, because I miss those times so much. And that makes the pain worse.

So, how can I live my life going forward when I so badly mourn the loss of my pain-free life?

I don't have a strategy for this.

I need a strategy to help me move on. To make a new life with the added element of "this is gonna hurt, but you're gonna do it anyway and to the best of your limited ability." I already do this, to a certain extent, with my job.

At work I lift stuff I shouldn't. I know full well it's going to hurt later (as well as during the task in hand) but I plod on - cases of eight 2litre bottles of Coke, 10kg bags of flour, 10kg bags of kitty litter, 24 pack beer crates. It hurts, but I do it when I can because to not do it would be to admit defeat and give up working. There are times when my body just will not allow it of course, and my employers know this so they tolerate the days when this happens, but in the main I do as I'm asked. Despite what will follow and in spite of my condition. I do it to maintain some semblance of the life I once had.

Am I wrong to push myself like this? I don't know. I do know that there are men like me all over the world. Men who toil and push themselves, trying to break through the pain barrier in order to avoid admitting defeat. There are, I'm sure, some men out there who go through all of this agony without ever knowing that they have fibromyalgia because they think that is what a man should do, it's 'normal' for a man to do a hard day's work and come home exhausted and in pain. They shrug it off as 'just an age thing' and put off going to the doctors - I know I did, for a long time. When I eventually went to the doctor - he could find nothing wrong. No strains, sprains, pulls, tears, arthritis, rheumatics, cancers. NOTHING. So it's got to be just me getting old, right?

At thirty six?????

Eventually, when you've been through all of the examinations, pokings and proddings by 'specialists' and they have found nothing wrong to be causing you so much agony, they stick you in the fibro category, and they leave you there to rot.

"You have to learn to live with it." they say, to which your reply should be "Okay doc, I'll do just that. Where's the training room?"

There isn't one of course. There is however this wonderful resource called "The Internet" and that's where you should begin developing your strategy for learning to live with fibromyalgia. Read blogs by people with fibro. Join facebook, google+ and other social media to engage with others in chronic pain. The internet is the only resource for helping you to come to terms with, and live with, your condition.

You're not going to get that from your doctor.

Resolute for 2016.

On this, the penultimate day of the year, I took a good look at the posts in this blog and one word kept resonating in my head:

Misery.

And another:

Doom.

And another:

Depression.

FibroBlog is depressingly miserable and doom-laden.

So, in keeping with the tradition upheld at this time of year, I resolve to cheer up FibroBlog and make it the blog it was supposed to be - stories of success against adversity, news of research into treatments, medical breakthroughs and positivity!

It was quite obvious that the writer (me) was suffering from some sort of negativity implant.

You can get an update on how I'm feeling over at my personal blog My Fibro Blog, but from January FibroBlog will be about positivity and hope.

And to kick things off in a positive way here's a lovely picture of 2015 being crushed to death by 2016.  Happy New Year to all followers and visitors.

Gary

Fibromyalgia and Depression

Having an invisible illness seems to lead to other invisible illnesses.

I have fibromyalgia. I also have IBS / Crohn's Disease. As my fibromyalgia was diagnosed first I assume that the anxiety and stress that placed on me, both at home and in my work, led to the turmoil in my guts. And it's been that way ever since.

Almost thirteen years have passed since I was first diagnosed with fibromyalgia and, in that time, I cannot remember a day when I didn't have symptoms from it. Of course it ranged from mild to moderate, moderate to severe, but always there. After four years of constant pain I eventually began to experience symptoms of IBS which, I assumed, were related to the lower back pain and I instantly thought I had cancer. After many weeks of putting it off I eventually went to see my GP and after a few more tests I was diagnosed as having Crohn's Disease an incurable inflammatory bowel disease. Oddly all tests since initial diagnosis have shown no inflammation so my gastroenterologist has 'downgraded' my condition to Irritable Bowel Syndrome - but it affects me no less because of this downgrading!

So, having lived with chronic pain for almost thirteen years and bowel disturbances for the past eight and a half years, I thought I'd had my quota of 'invisible' illnesses but it appears that I was wrong. For the Gods have decided to test me, yet again, to see how I cope with another layer of invisibility.

This new invisible illness came out of nowhere - as did the other two - but rather than hit me with symptoms all of a sudden - fine one minute, stricken the next - this cloak of invisibility crept up on me over a period of about two weeks. I'm talking about depression.

Obviously, when you live with chronic pain 24/7 for 365 days a year you're going to have times when you feel a little down and fed up with yourself. I've experienced times like that before but I've always snapped out of it fairly quickly and resumed as "normal" a life as I could under the circumstances.

But this depression has gone much deeper than my previous bouts of 'fed-uppedness' (if that's a word?) This depression has really knocked me for six. This depression has been the most invisible of all of my invisible illnesses - with fibro and IBS my family and work colleagues can see me physically wincing with pain or running off to the loo or holding my guts - sometimes they can hear my symptoms too, so as far as invisibility goes they're somewhat apparent to the outside world.

Depression is a whole new ball of wax. Externally there is nothing to see. I laugh at funny TV shows, I act the fool and joke around at home and make pleasantries with my customers and colleagues at work. My face and body show no outward signs of being ill.

In my head I want to explode. I want to shout at people who annoy me - the ignorant customers who don't say please and thank you when I have to fawn over them like they were royalty, the stupid ones who change their mind halfway through a transaction or wander off to get something else leaving me with a growing queue. I want to curl up into a little ball and hide away instead of facing these people. At home I join in because I have an obligation to do so, not always because I want to. I'm short tempered with the ones I love most and I hate myself even more because of it - and so it builds up and up and up until, one day, I know it surely must explode. Yet all the time I fight it so that, externally, my face looks 'real' and 'normal' just as I've tried to hide my chronic pain and gut turbulence for so many years. I try to be a valued member of society but I value myself less and less each day - I feel unworthy of praise, of love, of life itself. Things I love to do are being abandoned - art, drawing, photography, cooking for my family all feel like the most arduous of chores now whereas, six weeks ago, they were my life.

Depression is the most heinous of invisible diseases because there isn't a scrap of evidence of its existence. It's all in my head. I should snap out of it. I should think positively. It could be worse. I could be paraplegic - all the things we're told never to say to someone with depression I've told them to myself over and over again - and it's right they are definitely the wrong things to say to someone with depression because I can't snap out of it, or think positively and it couldn't be worse (surely) and I'm sure most paraplegics feel the joy of life sometimes and I know it's all in my head because it's a mental illness, to do with the brain, which is found, in most people, in the head!

I have not, as yet sought treatment for this depression, prefering to try and fight it myself - but I think I'm losing the battle. My reasons for not seeking treatment are that my GP thinks I'm a malingerer already and I'm worried about the side effects any medication might have on my already feeble guts. I know in my heart what I need to do - I've told many people in my position in the past to get treatment as soon as possible so I'm going to have to bite the bullet........ before I take a bullet.

Positivity In Pain - An Apology.

I have always considered myself to be a fairly positive person, but recently I've been having so many negative thoughts I'm beginning to think I'm turning into Victor Meldrew!

Over the years I've berated my mother in law for her negativity (a prime example would be me saying what a lovely day it is and her responding "Aye, but it won't last, it never does!") but on October 10th I reached a milestone - my fiftieth birthday. The big five-O. My half-century. And, all of a sudden, EVERY LITTLE THING IS GETTING ON MY NERVES! I have little interest in anything other than drinking tea (or Carlsburg) and watching TV. If I have to move out of my chair I do so like a petulent child. It will be no surpise to me if, tomorrow, I throw myself on the ground, thrashing and screaming, if I don't get my own way over the TV viewing for the night! I just feel like kicking-off like that, just once, to see what reaction I get.

It is fair to say, in my defense, I am in a great deal of pain, twenty four hours a day, three hundred and sixty five days of the year, but I've been at this level of pain for approaching a full year now, with no relief, and prior to my fiftieth birthday I was placidly getting on with it, living as best I could and trying not to let it get me down. Come 'post fiftieth' and a switch must have been triggered. Miserable. Grumpy. Whiny. Moaning. Depressive. Negative. I just can't seem to help it. Minor irritations are now big irritations. My pain levels have gone through the roof, or at least it feels that way.

So, was it reaching fifty that triggered this depression, or was it suffering the pain for just too long? I can't even blame the medication because I don't take any of the prescribed stuff anymore - just paracetamol which has zero effect!! Either way, I'm in a deep depression at the moment and I just want to apologise to any readers out there for my negativity. I'm sure things will improve. In time. (I hope)

Just ignore me until I have something positive to say!

Unexpected Support

These days getting anything for nothing is an impossible task. This is especially true of hard-pressed local authorities under a Tory Government. 

So I was genuinely shocked to hear that, after my Blue Badge assessment, I had been referred to local social services for 'additional support' to enable me to stay in my own home. (This was especially shocking given the fact that my family and I have never had any intention of leaving it!!) But apparently, the occupational health assessor had decided that my level of disability warranted an intervention by the Staying Put Scheme - set up to support home owners and council tenants remain in their homes for as long as possible rather than enter sheltered housing or care homes.

So, even though I own my home, I'm eligible to access support to make living with this dreadful condition a little easier, and never one to look a gift horse in the mouth, I have.

The lady who visited me was another occupational therapist who observed me doing the everyday things I would do in my home - climbing the stairs, sitting and rising from chairs, getting in and out of bed, getting in and out of the bath / shower, using the toilet (not actually using it!!), preparing meals. She asked me about my comfort levels during each activity and, as I seem to be in a never ending flare at present, I answered as honestly as I could.

The trouble is, I can do all of the things she asked me to do in the fashion I've become accustomed to doing them - I can get in and out of my chair - with some pain, I can get up and down the stairs - with some pain, I can get on and off the toilet - with some pain, I can get in and out of the bath - with some pain etc. I didn't tell her I was in pain each time I did the activity requested but, somehow, she knew. She could see my pain. I wasn't wincing, or groaning at every activity (or, at least I don't think I was) but she identified the areas I have most difficulty with merely by observing me do them!

Two days later I got a visit from the local authority Handy-Man Scheme who installed a bannister to enable me to climb the stairs easier and a week after that the occupational therapist returned with a bath 'balloon' that inflates so I can sit and be lowered into the bath, then raised back up to get out - it's an amazing piece of kit and has made life so much easier

.
I no longer have to ask my wife to help me out, or clamour over the edge of the bath to the floor when I can't lift my legs.

I'm incredibly grateful for these things. Having struggled along for so long it's nice to be able to get a bath without the gymnastics - I used to have to get in backwards on my good leg, sit down with my bad leg over the edge of the bath and then 'man-handle' it in to the water! Now I just sit on the seat cushion, deflate it, get bathed, re-inflate it and get out - it's fantastic!.

TENS Machine - Update

The 'Knight in Shining Plastic' I described recently (Back Pain - Sudden Worsening) - the one that arrived just as my back pain became unbearable after it seized up - has been working brilliantly. I've tried just about every mode, and program within each mode, and found the one(s) which help the most.

The unit works by stimulating nerves and muscles via a small electrical impulse. When on the sensation feels like mild 'pins and needles', a tingling or prickling feeling and, if turned up high enough it sometimes makes the muscles twitch. 

So far I've used it two or three times a day on my lower to mid back and, I have to say, it's an amazing piece of kit. I attach the electrodes to the points of my pain (in my case anywhere on my back will do) switch on and away I go. The relief is more or less instant as my pain gives way to the mild tingling and pulsing of the machine - I can increase the intensity of the stimulation with a press of a button depending on how bad my back is, and I tend to gradually reduce this over the course of an hour until I switch off the unit. Then comes the second of only two downsides to the machine - the pain returns within a few minutes of switching it off. (The first 'downside' is the icy coldness of the self adhesive electrode pads that you have to stick on your lower back!!)

But I can live with that. 

A couple, or even three hours a day with no pain is such an improvement on twelve years of 24 hour a day pain. The unit is portable so I can take it with me on trips out to finally 'enjoy' (?) a full shopping trip with my family, as opposed to grumbling and moaning to them after ten minutes of pushing the trolley! (Though I reserve the right to grumble and moan about shopping even if pain free!!)

I've also tried the unit on my hip pain with equally positive results - when on full blast I can walk upright, with no limping. I even managed to do a little 'Dad dance' around my living room with my Daughter. For the first time in years I felt like a normal father.

I know that it's early days, but based on the results so far my investment of fifty quid has been well worth it!