Fibromyalgia...a disability?

Yesterday as a partially tongue in cheek gesture I applied to the local council for a disabled parking badge. I was thinking they would turn me down as I've rarely encountered too many people that take Fibromyalgia particularly seriously.

I did explain that physical exertion has a knock on effect on my health. Too much walking, enhances the fatigue, makes my muscle spasms kick up a gear leaving my joints really painful. I become dizzy and my headache starts to turn from just that into a migraine whereby light becomes an issue as does noise. All in all too much of anything much leaves me feeling like I've been run over by a bulldozer whilst suffering from a bad bout of the flu.

In any case most of these symptoms are invisible much like the proverbial duck. So I can appear to look completely normal but my pain and anguish like the paddling ducks feet beneath the waves is invisible. Unless I decide to whinge or give voice to the variety of issues troubling me you should never know I'm poorly. I do limp from time to time, I do struggle with bending and flexibility but you'll just put that down to me being overweight.

The trouble with Fibromyalgia is the fact that it has such an impact on every part of me, if I were to answer the 'how are you?' question people would be collecting their pensions before I'd listed all my issues!!

Headaches, like actually a sore head like I've banged it somewhere! Unless I'm super stressed or very tired and then it'll turn ugly and become very migraine like. Tunnel vision, light aversion, feeling sick.

Eyes, dry and scratchy like having an eye infection.

Throat, often sore like having a throat infection but this comes and goes as it sees fit!

Ears, repetitive and/or loud noises trigger a panic type response to the point I get very agitated and need to escape.

Neck, stiff like I've cricked it badly and have lost some mobility for the time being and it's just noticeably sore and achy.

Shoulders/Knees/Hips etc. these joints seize up and therefore my mobility varies from time to time and from stress level to stress level.

Heart, have palpitations and a racing heart but this tends to be linked to my anxiety levels mostly.

Back, I also have two prolapsed discs so I already had constant back pain so this is just exacerbated by the mobility issues caused by the Fibromyalgia

Bowels, Varies between IBS type symptoms and constipation until you bleed!

Bladder, difficulty weeing, the fibrofog causes the connection between brain and bladder to be very obstructed so even when desperate it can take a while to convince my body to start a flow!

Fibrofog, people suffering with Fibromyalgia have brain fog, where cognitive ability is significantly reduced, thinking becomes hampered and it is literally like the thought processes are fogged up and unresponsive. This is definitely me, I am the shadow of my former self.

Hot flushes, I literally melt on the spot on a regular basis, clothes soaked through, sweat dripping off me like I'm a navy (yes I have had the menopause tests)

and that's all before I have a panic attack, get depressed or my PTSD has an impact!

So you can see that although I have many issues they're not instantly obvious to anyone like a broken arm would be!

Anyway back to the disabled badge. I have been struggling with too much physical exertion making me feel utterly rubbish, well more rubbish than my baseline rubbish feeling, and baby bear tongue in cheek to me said, "you should be able to park in the disabled bays!"

Whilst I was busy explaining to her that I wasn't disabled I got around to thinking..

'what is disabled?'

The definition, (I looked it up), is 'having a physical or mental condition that limits their movements, senses, or activities'

On reading that I found myself admitting that I might actually fall into this definition!

But how could I be classed as disabled? Me the police officer? Albeit only in name these days, ten months into a sickness absence.

It was whilst toying around with these thoughts that I looked up the criteria for a disabled parking badge. Initially all I could see were the requirements to be in receipt of various disability benefits and I very nearly clicked away from the web page in defeat when I saw Fibromyalgia listed under one of the qualifying disabilities! So I am disabled I thought!

I completed the on line form quite hastily before I changed my mind. Clicking the send button on completion of the form I muttered under my breath something about never seeing that again or being turned down flat and I moved on with my day.
Literally two hours later I had an email telling me I had been accepted for the scheme and asking for a photo and a registration fee! To say I was gobsmacked would be an understatement!

I'm still not sure how I feel about this revelation, I'm torn in differing directions, pleased to be acknowledged that someone actually gets how tough Fibro makes life but distaste that at 48 years of age I'm left behaving like a disabled geriatric old fogy.

Oh well, I guess I'll just pick myself up and carry on as I have done on the other thousands of occasions in my life when some pile of crap has tried to knock me out of this race we call life.

Shame on you O2...

I experienced a trauma yesterday which I want to discuss with you.

Maybe to some of you, it would be inconsequential but to a single parent, suffering with Fibromyalgia, depression, anxiety... living alone with a daughter who has an extensive social life which leaves me spending 22/24 hours alone. This was indeed a significant event.

What was it you ask?...broken bones, smashed up car, nope...

I dropped and smashed my new iPhone 7 plus!!

(PS This isn't mine, this is just off the net. I cannot take a picture as my phone is DEAD grrr!!)

It's left me fraught, stressed and feeling as if my only conduit to the outside world has been severed. Daft really as here I am communicating with you but this desktop computer is blooming heavy and inconvenient to walk around with! I cannot even begin to guess how many times I've reached for my phone in the past 24 hours since it occurred or will in the next week without it. I clearly should be surgically attached to it as I am that obsessed and dependant.

Having committed the crime I recalled having taken out the insurance that was so readily sold to me by the O2 salesman not one month previous. He'd been gushing, if not insistent on it's benefits. I had reflected on my #Fibromyalgia and how very clumsy it had made me of late before agreeing to take it out. I am also utterly convinced he said to me that if I broke it I could return it to the shop for a like for like swap or replacement within 24 hours but as things transpired I clearly dreamt that bit!

Going out is quite an event for me as I suffer badly with anxiety, the Fibromyalgia also makes activity very tiring and painful. But feeling so bereft and thinking the O2 shop would help me I had a wash and brush up, donned some make up, swallowed a propranolol anti-anxiety tablet before hitting the road.

During the upgrade process recently the local O2 shop had been very attentive, overly helpful and very eager to assist me so I felt convinced they'd help solve my crisis.

Parking up, I headed straight to the O2 shop. Reaching the shop it immediately became obvious how busy they were,  so I waited patiently for the store greeter woman to take my details before being told me there was a 25 minute queue.

"Did I want to wait?" she asked.

"No brainer" I said, "I need this sorting."

She handed me a free bottle of water and I headed for the seat she proffered.

The people swarming around the shop were already testing my veneer of control, I could feel the panic rising, so I closed my eyes and started one of my calming breathing exercises. Unfortunately the woman sitting next to me started a conversation with me, telling me she'd been there around 40 minutes, lamenting she was still no nearer to getting the help she needed. We both puzzled as to why the shop was so busy on a Friday lunchtime but neither of us could figure it out. I mused that they should have pagers or even make use of our O2 phones to make us appointments which we could then return to later leaving us free to go off shopping in the meantime.

No such common sense approach existed though and there we sat. After another five minutes my compatriot decided to abandon her mission leaving me sat alone in the window. Closing my eyes I restarted my breathing exercises.

About fifteen minutes later I became aware of the female greeter approaching me. She proceeded to almost scold me like a child,

"It's our busiest day of the year you know, the launch day for the new iPhone X,  you didn't pick a good day"

Her tone was such that I was left wanting to scream back something sarcastic yet witty about how I would try and choose a better day to have my personal disaster next time but I bit my tongue instead fixing her with my sternest glare.

It got worse...

She was holding a telephone. A landline handset. I immediately felt the panic wash over me, and my throat tighten. Sweat started to bristle on my brow, my breathing becoming shallow. I considered walking out as I have a stupid phobia of telephones, don't know why, but I tend to avoid them at all costs. Greeter woman casually explained she was going to call the insurance company for me so I could start my claim... I observed her perplexed and asked,

"Isn't that what I queuing up here for you guys to do?"

she looked at me as if I was daft and said

"well this way you'll be speeding things up"

I didn't feel able to argue or explain that I was actually scared of phones! So I took the handset from her and embarked on one of the most frustrating of conversations. Explaining to the male operator how I'd dropped my precious iPhone onto a dry gravel path which resulted in it sustaining a smashed screen rendering it dead as a door nail he then incredulously argued the toss with me on the subject. Apparently I must have also caused water damaged to it? No I said,  I definitely did not, I just dropped it onto a dry gravel path. No, he said that wouldn't stop the whole phone working!

"how much touch capability does it have?" he asked

"None"

I said, now raising my voice

"it's completely dead"

After several further exchanges about bloody water damage he finally got the message!

Some fifteen minutes later, I am now cross, flustered and desperate to escape this hell hole. The male operative asked me to get a member of staff for him. Well that was easier said than done as they were all busy. I waved my arms frantically until the greeter woman saw me, she looked frustratedly at me before walking over to me, whereby I handed her back the blasted phone.

The ensuing conversation beggared belief. She proceeded to argue with the male on the other end of the dreaded store phone that she would be prepared to accept my damaged iPhone in order to forward it to the O2 insurance company!. She point blank refused. Apparently they had lost a customers phone recently leading to them having altered store policy as a consequence, now they refused to get involved in taking in the damaged phones!!

O2, happy to flog the insurance folks but not quite as helpful when you need to make use of their products!

She then handed me back the phone with disdain whilst a haughty look graced her chops...

"You'll need to arrange a pick up from your home address"

she uttered the words triumphantly if not with a touch of spite being sprinkled on top. Trying hard not to cry as the stress and emotion brimmed over my flimsy defences, I asked

"So why did you put me in a queue for help when you had no intention of helping me at all? I could have done all this from my own home couldn't I?"

She just shrugged and walked away. Quietening an animalistic urge to follow her and ram the phone down her aloof throat I resumed my conversation.

The ordeal however wasn't over as he then instructed me to switch of the 'find my iPhone' capacity!

"How I asked? The phone is dead!"

Looking around me at all the computers within touching distance I shook my head for the umpteenth time in disbelief that I was not getting one jot of help. I arranged the collection with him but was sternly warned that unless I switched off the find my iPhone they would not take it!

I hung up, slammed the phone down on the desk nearest to me and flounced outside, tears spilling down my cheeks. I felt humiliated and really cross to have wasted the best part of an hour achieving very little.

So I now have to wait until Monday for a collection, and then a further 5-7 days for a repair or replacement. I was also told I may not get back the same colour phone??!! The replacement will be what they choose and I get no say! Not a happy bunny!

All in all I'm very sad that I've just recommitted myself to O2 because if I had not I would be out of there like a shot. Yes some of the experience was horrific because of my personal anxiety issues but even if you were to sieve out those parts from the mix I still believe they behaved appallingly. Shame on you O2.

The story isn't over yet either is it?

Will they collect the phone?

Will the insurance pay out?

Watch this space!!

Fibromyalgia - When will I get better?

I can't believe it's been nearly two months since I wrote anything for my blog!
I found myself caught up in the summer holidays and time consuming creation of a YouTube channel with baby bear!

The Wilkes Family, our new channel, is a daily vlogging adventure which has been an exciting challenge but also a huge learning curve for me learning about creative filming, editing and trying to publicise a new YouTube channel!

Baby Bear came up with the idea as she thought it could be a new occupation for me! Bless her, but she thought if we were to grow a channel we might manage to make money from it!  I think the half pay worries were obviously getting to me and in turn her and she was trying to help.

I have for the time being gotten swept up in the dream of making it big like some of the other families on YouTube, so I'm putting my heart and soul into it for the foreseeable future. It does seem to bond us with a common interest, but it does also keep me focused on doing something positive. So if you've younger children or young adults around your houses' please could you ask them to 'sub' up to our channel (that's the in speak for please subscribe!) please, as the more views, subscribers etc. we can gain then the closer we can climb towards our dream!! Our Twitter account is @WilkesFamily if you wanted to follow us there!!

Anyway back to an update on me. I've literally not long had a letter through the door from my force agreeing to extend my full pay up until the 31st October 2017. That's an extra month and ten days. This is my second extension, my first half pay date was June 20th, then September 20th and now 31st October 2017.
I have had the PTSD diagnosis, generalised anxiety disorder, depression and fibromyalgia.

I've also recently had a very encouraging visit to the FMO where she told me outright that I'll never be fit to be a police officer again. A conversation then ensued which completely frustrated me in as much as she explained I'd have to exhaust every possible treatment suggestion to 'make me better' before the H1, ill health retirement question could be asked of the force. She said if she asked it now it would be rejected. She thought another 6-9 months may be sufficient! So for now I have to get myself onto a graded exercise plan for the fibro, and find some more mood management therapy as the charity is deemed not to be independent enough for the force as I may be exerting pressure on them to say what I think needs to be heard?! Bloody ridiculous then so much of police procedures in this sphere is, isn't it?!

I have been struggling with the 'when will I get better' concept. When you get ill, you recuperate before getting better don't you? Yet I'm stuck in a groundhog day sort of loop like some sick dream. I feel trapped by this chronic illness and worry a lot about how people must get compassion fatigue continually hearing that I'm still not well.

Nine months have passed and although psychologically I am in a better place, physically not a lot has changed. If anything the fatigue, joint pain, slow cognitive reactions etc. are unchanged and if I'm honest probably more embedded than ever. My depression/anxiety are improved because I haven't had to enter the hell hole that is my working environment for months and I do know that should I return things would quickly deteriorate again.  I'd be in a very dark, if not dangerous psychological place if I went back. I well up with tears, panic just contemplating it.
But I had hoped my Fibro would be better controlled if not entirely expelled by now. I kind of thought I could beat it, why would this happen to me? But it's definitely got me firmly in its grips. Any exertion more than normal, lets say our day trip to London on Saturday, have a very significant knock on effect. I've had a temperature and felt flu like ever since, I've ached and had muscle spasms all over my body and especially my legs as if I've run a marathon and the fatigue feels like I've worked two back to back night shifts without sleeping.

I've started another drug called Gabapentin which seems to help a bit but I'm still taking co-codamol and sertraline. When I'm in a flare up like now though nothing touches the pain and I am pretty much just a zombie.

All in all Fibromyalgia is shite, its an invasive bindweed type illness that creeps into every facet of your life. It has an impact on absolutely every part of my life leaving me wondering, 'when will I get better?' Perhaps the question should actually be 'will I ever get better?'

So I'm back to the FMO on the 11th October 2017 but the NHS wheels move slowly and I haven't even had the referral appointment date come through yet for the chronic fatigue clinic let alone seen any results from their treatment plan! The other thing the FMO wanted the GP to sort was this mood management but the only tool he has to offer me is to go back to steps2wellbeing again... and I've been through that particular hoop twice already to no avail so I'm lost as to what I am meant to be doing on that front.

I saw on the telly today This Morning did a slot on chronic illness and pain. It is good to see it main streamed, maybe people may start to understand it a little better. Sad that it takes someone like Lady GaGa to suffer with Fibromyalgia for it to hit the mainstream news media outlets but that's life.