Standing On The Verge (of a nervous breakdown.

I fear that my sanity is about to break up with me.

sanity

At the same time, Insanity keeps knocking at my door and asking me if I want to come out and play. I don’t but it just won’t take no for an answer. I feel like a woman on the verge of a nervous breakdown, though I’m not too sure why the breakdown should be the one feeling so nervous. The thing is, I like the verge and I don’t really want to cross it. The verge is soft and squidgy under my feet but Insanity isn’t playing fair and is being mean and spiteful. It keeps trying to push me over the verge and into the breakdown…I want to punch it in the metaphorical face.

insanity

I’m guessing that the constant pain, the absence of chocolate and the definite lack of sleep has put me in the place where I am now, and it’s certainly been a long time since I visited the ‘Land of Nod.’ This would probably explain why I keep wailing like a banshee over the most simplest of things.
When I stubbed my toe, I fell to my knees and bawled like somebody had told me that my dog had just died…and I don’t even have a dog.
And when a fly landed on my shoulder, I hysterically exclaimed:
“Fly, why are you victimising me so?! Am I so wretched a creature that you would mistake me for a compact mass of substance otherwise termed as poop?! Oh fly, why do you torment me so?? I tend to get a bit dramatic whilst standing on the verge.

fly

By now, even Insanity was having second thoughts about playing with me and Nervous Breakdown was practically having…well, a nervous breakdown, all the while babbling like a brook.
“For heaven’s sake!” Cried Dignity, “get a bloody grip woman, have you no shame?” To which I could only reply, “no, he’s run off with Sanity… the treacherous two-timing bastard.”
After about 30 minutes, Calm decided to intervene and take control of the situation.
“Okay emotions, everyone step away, there’s nothing to see here. Come on, give the woman some breathing room.” But alas, all the breathing rooms were locked and I started to hyperventilate until Calm soothed me once again.

calm

Last night, Sanity came back and begged to be let back in, although there was a bit of an altercation with Insanity. After Sanity had kicked it in the proverbial gonads and Nervous Breakdown had stopped breaking down long enough to gather enough courage to happy slap it across it’s abstract face, Insanity left whimpering that it would be back soon and that I hadn’t heard the last of it, not by a long shot.

I took Dignity’s advice and decided to get a grip but Grip kept moaning like a bitch that I was holding on too tight.
Shame came back too and together with my companions, Peace, Calm and Tiredness, we all decided to go on a long awaited vacation to the ‘Land of Nod.’

*Taken from my blog The Incoherent Ramblings Of A Moose

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Shake, Rattle and Roll. (Body Tremors)

Ah Fibromyalgia, the gift that keeps on giving.
Now never let it be said that Fibro is a bit of a Scrooge for in it’s generosity, it has already gifted me with over 60 symptoms, M.E. Hypothyroidism, osteoarthritis and arthritis of the eyes. See how it likes to share? After all, sharing is caring.
So what little gem did Fibro bring for me today? Well that would be my good friend ‘Tremors.’
I remember the first time that I met tremors. That was the defining moment which would begin the endless rounds of MRI’s and countless trips to Neurology, and end with me having to use a walking stick.

Two months previously, I had noticed a slight tremor in my left hand. Nothing too serious, just a little involuntary shaking that lasted a few minutes. I promised myself that I would make an appointment to see my doctor the next day, but as it had abated after a couple of hours, I soon forgot all about it.
I remember trying to get out of bed one morning and wondering why my limbs felt so weak. I tried to stand but my legs wouldn’t move because they were shaking, and despite not doing a thing, I felt exhausted. Climbing back into bed, my first thought was that I was probably coming down with the flu, and so I just decided to sleep it off.
The whole thing happened so suddenly that I didn’t even have time to process what was happening.
It wasn’t a tremor, not that first time, it was a full on convulsion, a seizure that caused every muscle in my body to involuntarily and violently contract. Each time the seizures would last a few minutes and then reside, and as my muscles begun to relax, the next round of convulsions would begin again.
I tried to speak but no words would come forth, only a series of grunts and groans. And as another convulsion ripped through my entire body, my mouth would clamp shut and my teeth would clench tightly.

It’s a bit of blessing that the Womb-Fruit isn’t prone to panic. Apart from being scared of anything that crawls, flies and has more than four legs, he’s pretty fearless. Calmly, he called my mother who suggested that I go to the hospital. This is when I became convinced that I must have been a man in a past life, because like most males when faced with a flesh eating, parasitic, plague carrying Ebola bug, I kept insisting that I was fine and that I would wait it out. After two days, my body was a contorted mess. The gap between convulsions had lessened somewhat but were instead replaced with tremors. I could sit up but walking was extremely difficult. Where before a trip to the bathroom would be a mere 2 seconds, it now took 10 minutes as my body stopped and started. I could talk but speech was also difficult. Each one had to be forced out, preceded by much stuttering and stammering and which left me physically worn out.

After three days, the tremors and convulsions stopped. My muscles ached with the vigorous workout that they had been given, but there were no more spasmodic contraction…well none apart from the one in my lower back. But a hot bath and a good night’s rest would soon sort that out, or so I thought. It Didn’t.
My back remained stiff and unyielding and even though I could now walk, the pain in my back would radiate down to my hips, which would then affect my legs.
My doctor was at a loss to what had caused it, so begun the endless rounds of hospitals and tests. MRIs showed nothing. Body scans revealed that I might have a very slight case of Lupus but that I definitely had the beginnings of osteoarthritis. And the blood tests showed the usual anaemia, high level THS (Thyroid stimulating hormone) and a low T4 level. Even Neurology where stumped for an answer, although they have seen the tremors in action.
Now six years on and I still don’t have a diagnosis as to the cause, but it’s more than likely that it’s just another symptom of Fibro.

I’ve learned to live with the condition and to accept that it will probably always be a part of my life.
Sometimes it could just be one leg or the upper half of my body. Other times it’s just a quick succession of jerky movements before ceasing altogether. Occasionally, it’s all over, although nowhere near as bad as that first experience.
I have discovered that it can be triggered by stress or when startled, but often then not, there is no reason, it just happens.
I’ve now learnt to recognise the onset of an attack, weak limbs being a vital clue. On those days I just stay in bed, because I’ve noticed that the less I move, the less vigorous the tremoring. But the most important thing that I’ve discerned? Not to carry a steaming hot cup of coffee up the stairs when an attack is in progress.

The Games Brain Plays (Fibrofog)

“Can you put the monkey in the oven and make me a cup of cheese please?”
No, I’m not high on the medicinal herb that is marijuana, nor have I overdosed on my meds. It’s just that for whatever reason, my brain has decided that it quite likes the words ‘monkey’ and ‘cheese’ and will therefore substitute any words that I have trouble remembering with those two in particular. Sometimes Brain likes to shake things up a bit and combine those words, so the sentence “I would love a bowl of spaghetti”, becomes “I would love a bowel of cheesy monkeys.”
But that’s not all, on no, because when Brain gets really tired, it likes to substitute the words of normal everyday things for even more nonsensical ones. Ketchup becomes ‘the blood sauce that you put on chips. Birds become ‘those flippy flappy things with wings.’ My vape gets called a ‘sucky sucky’ and my child becomes an ‘evil, soul sucking imp of Satan’…er, okay, maybe that one isn’t down to Brain…

Next up in the Brain’s armoury of ‘Mind Over Mouth’ games, is ‘you see it, you say’. This game I do not like, especially when in company. Let us observe…

talking-stick-figure-clipart

Well that’s not so bad you might think, but then Brain ups the game by pretending that I also have Tourettes…

talking-stick-figure-clipart2

And let’s not forget the time when I told a woman that her newborn looked liked Gollum, or when I informed an old man in the supermarket that I wanted to lick his face because he looked so morish. (I meant the cake he was purchasing)
This morning I asked my womb-fruit to pass me a towel…except I didn’t. What I actually said was,“Can you pass me the cheese…the monkey…the cheesy monkey…” which then became, “no, I meant the toilet (the toilet door was open)…the fluffy fluffy…the dewberryflip (a word I use when I’m really stuck) and the shamone” (don’t ask) All the while, my devil seed knowing full well what I wanted to say, just stood there laughing, because like Brain, he finds it all amusing. I finally gave up when I asked him to “pass the dutchie ‘pon’ the left hand side”, which as anyone in Britain back in the 80s would know, is an old 1980s reggae hit.

There isn’t much that is known about fibro fog, except that it’s usually attributed to poor sleep, certain medication, stress and over-stimulation. Sometimes it’s mild and other times I can’t even remember how to use my phone or how to turn on the laptop.
I do sometimes wonder if it is down to something called Nominal Aphasia which shares much of the same symptoms of Fibro Fog, but as yet, there have been no studies to connect the two. I know at times that I am unable to speak at all and the only sounds to come out of my mouth are incoherent babbles. This is when it becomes highly distressing, especially in public and when the womb-fruit becomes my personal translator.
Most of the time though, it’s just me and a series of cheesy monkeys, which although annoying, is also rather a dewberryflip.

 

I Hate My Bed

I hate my bed. I really do.
But this wasn’t always so.
As a child, my bed was the source of many wondrous adventures and a space in which to contemplate the confusion of a world I didn’t yet understand. As a pre-teen, it was the place where I had my first magical kiss. When I became a young adult, I couldn’t wait to get home and bury myself beneath the soft fabric of my eiderdown after a particularly heavy night of partying or clubbing. And as a fully fledged, paid-up member of the grown up society, it was my haven from a hard day’s work and a place for all manner of lascivious behaviour…ah, good times.
When motherhood came a-knockin’, It once again, became a source of wondrous adventures where stories were told, secrets revealed and where talks of hopes and dreams where met with laughter and amazement.
Now, it is my prison.

Being bed-ridden is not something that I ever foresaw in my future. Those nights of longing for five more minutes, or wishing that I could while away the weekend in deep slumber, are no more.
Today I cried. I left my room in order to wash a few dishes after C (my son) had graciously served me dinner in bed and to retrieve the clothes that had been slowly fermenting in the washing machine for over twelve hours. And it hurt. Just climbing out of bed proved to be a job in itself and as my feet landed on the floor, my body felt so weighed down, it were as if it were about to become absorbed into the carpet. It took all my strength and effort to land one foot in front of the other as gravity played it’s game of trying to keep me firmly rooted to the spot.
But I managed to climb down the thirteen steps in my usual crab-like manner, ever fearful of falling, and then I could go no further. I slumped into the nearest chair and there I sat and wept.

I wept because of the pain. I wept at my inability to perform even the simplest of tasks. I wept at my lack of energy. I wept because I physically couldn’t move anymore. I wept as my son came downstairs, washed the dishes and took the clothes out of the washing machine without being told to do so. And I wept because I felt like a pathetic excuse for a mother as I let guilt consume me. Lastly, I wept because I knew that soon, I would have to return to my bed. My prison.
Sitting hurts, standing more so, but because my bed has a memory foam mattress that moulds itself to the shape of my body, it is the only place where I can get some pain relief.
Every fucking activity that I do, is succeeded by a place on that bed. I shower then have to lie down. Get dressed, then have to lie down. Do the washing, lie down. Hoover the room, lie down. Even after I make the bed, I have to lie down on it. And if there is shopping to be done, appointments to be met, functions to attend, then my spell in that bed could last a whole week or longer. A week in bed. That would have sounded so good when I was who I used to be.

So yeah, I hate my bed, because as the world outside continues to spin, I remain laid up and enfolded in the one thing that eases any physical pain. The mental pain it causes however, hurts much more than the ones that wrack my body.

Fibromyalgia, Chronic Fatigue or M.E?

I have noticed during my many medical appointments, that when giving a history of my illnesses, not everything is written down as spoken.
For example, if I say that I have M.E (Myalgic Encephalomyelitis) and Fibromyalgia, (FMS) only Fibromyalgia gets listed.
Alternatively, I may mention just having Fibro which is in turn, is then listed as Chronic Fatigue Syndrome. (CFS) It seems that for some of the medical profession, all three illnesses are but one of the same.

When I was first diagnosed with Fibro by my consultant, or as I like to refer to him, ‘Satan in a suit’, I was just told “oh, you have Fibromyalgia. Go and look it up”, whereby a rather flimsy one page leaflet was thrown my way.
After Googling ‘101 And One Ways To Make A Voodoo Doll’ as a present for said consultant, I decided to find out what this Fibro-my-what-gia was all about. There wasn’t much information on it back then and what I could find was mainly about fatigue and the 18 Tender Points.
Of course now we know more than we used to, but along with more knowledge came more confusion.

Whilst Rheumatology would note that I had Fibro, my doctor would always write CFS.
When I asked him which one I had, he replied with a very dismissive, “yes, yes, they’re both the same thing.” But are they?
We know that the medical profession are divided as to whether Fibromyalgia is a real illness or not. I even had one doctor tell me, “Fibromyalgia? My neighbour had that. She just changed her diet and ate healthily and now she’s cured.” I really wanted to ask him whether he’d gotten his medical certificate off the back of a Cornflakes’ box, but as he was just about to shove a tube down my throat, I decided to hold off for that moment.
As for M.E, I no longer mention it when reciting my medical history as it always Irreverently gets marked down as CFS.
For some, there is a thin line of separation and each one is either grouped as Fibromyalgia/CFS or ME/CFS, whilst others are adamant that all three are a variation of the same disorder.

There are no doubts that there are similarities between FMS, CFS and M.E which include:

  • Fatigue
  • Cognitive problems
  • Anxiety and depression
  • Sleep disturbance
  • Headaches/Migraines
  • Impaired co-ordination
  • Bowel problems
  • Temporomandibular joint syndrome

The difference is that widespread pain is the dominate symptom of Fibromyalgia, whilst fatigue is central to CFS.
When comparing the symptoms further, we find that:

  • ME/CFS are known to start with flu-like symptoms, whereas FMS isn’t. But for me, my Fibro came as a result of having swine flu.
  • Pain from FMS gets better with heat and gentle massage, whilst the pain from CFS/ME does not.
  • FMS is thought to stem from physical or emotional trauma. M.E is characterised by neurological symptoms.
  • The diagnostic for ME/CFS/is different from that of FMS
  • People with M.E have levels of chronic immune activation while those with FMS do not.

So what can we conclude from all this? Not a lot really. It’s difficult to find any information that doesn’t link all three conditions together in some way, so maybe there is a connection after all. Are they all the same? In my opinion, there is enough evidence to suggest that they are not. But if those in the medical field don’t know the difference, then how are we suppose to know?

CFS and M.E. comparison chart
http://www.hfme.org/comparisonchart.htm

CFS versus FM: Twins, Cousins, or Just Acquaintances?

 

 

“But you don’t look sick…”

The one thing about Fibro that I hate…okay, there are many things about Fibro that I hate, but the predominate thing on my list when it comes to other people, is the “you don’t look sick” talk. Now along with the “you look well” spiel, the “you don’t look sick” sentence is guaranteed to get you a good swift kicking to the groinal area.

crazy lily p2

Why the offence at such an innocuous phrase? The reason is because I’ve come to realise over the last few years, that this straightforward statement has become an accusation of sorts and for some, has come to simply mean “I don’t believe you.” I had someone once say to me and I quote, “you don’t look sick. Are you sure you were diagnosed properly? Because some people pretend they’re ill so that they can claim benefits.”
Suffice to say that after telling her a few things about herself and her mama, we are no longer on speaking terms. In my opinion, she got off lightly as she could have so been buried six feet under my patio…right next to my ex.

Now I have a walking stick that identifies me as “sick,” but I don’t “look sick” (as a few people have expressed), so therefore I must be faking it. A friend has a tube running from her head to her stomach to drain away fluid after she suffered a brain tumour. The other day whilst on the bus, she was told to get up and let someone else sit because she “didn’t look sick.” So somebody please tell me, what is sick supposed to look like??


Last week, I found myself having some difficulty in swallowing. This didn’t worry too much until it felt as though I had a huge lump stuck in my throat and that my airways were closing up. In panic, Spawn called 111 as by then, I could no longer speak and my breathing had become erratic. A paramedic was soon dispatched and arrived just as I was mentally finalising my last Will and testament. Looking back, it still amazes me how I wasn’t charged with 1st degree murder as this man who looked a little bit like Donald Trump’s crazier brother, begun to patronise and belittle whilst all the while, looking at me like an errant school girl. The look on his face as I gasped out a list of my ailments, was a clear “but you don’t look sick” even though I couldn’t breathe, I couldn’t talk and there was a sodding great lump blocking my air passage. But Trump, in his infinite wisdom, had already decided that there was nothing wrong and that I was merely an over-reacting, female…at least that’s how I felt. He did a few tests before the ambulance arrived and declared on their entry that I was okay, but “we’ll just pop her to the hospital so that the doctor can look her over.” This was said in a “oh bless her” manner, which didn’t go unnoticed by Spawn either. By now I had three faces looking down at me as though not only was I wasting their time and resources, but like I was a simpleton who had just rode in on a horse from Crazy Town. Oh and they kept asking me repeatedly about my auto-immune illnesses as though they didn’t quite believe me, even though they had already written down the details…several times.

In the end, I was put straight through to A&E where they discovered that not only was my throat extremely red and swollen (the paramedic had told the ambulance crew that there was no redness or swelling of the throat) and that the lining of my nasal passages were also thick and swollen. Turns out that I had Allergic Rhinitis, which is caused when the body makes allergic antibodies in response to allergens, which in turn results in inflammation and irritation to the lining of the eyes, nose and throat. So thank you Trump for assuming that just because a person doesn’t look sick, then they must be faking it. Let’s hope that one day, your assumption and your basic lack of human kindness, doesn’t put someone’s life at risk..

Tell me again how well I look…now tell me again and mean it.

If there’s one sentence that is more likely to make me want to pounce on someone like a pre-menstrual, hormonal raging, menopausal, high on crack, slightly psychotic Ninja assassin and beat the right royal fuckery out of them, then it’s “Hey, you look well.” This once seemingly innocent sentence, used to be taken as the compliment that it was intended to be. But now, it is a phrase which has become loaded with unspoken meaning.
Now it can mean anything from, “you look well so you can’t be as ill as I thought,” or “you look well so therefore you must be faking it”. It has also become a way for others to avoid asking you about your illness because when someone tells you that you look well, the immediate response is to reply with “thank you”. End of conversation and all mention of illnesses skilfully avoided. It’s quite clever really and as annoying as fuck.

I recently had my case with ‘Family First’ closed on the basis that “I looked well.” No really. The case worker had increasingly become bogged down with new cases and was clearly unable to cope. I knew that the support I had asked for was coming to an end when:

1. All the help and support that was first offered with filling in forms, contacting relevant agencies and making important phone calls, suddenly became about me being ‘proactive’. In other words, “do it yourself.”

2. The fact that she kept mentioning how well I looked, even though she knew that I was struggling both physically and emotionally. Because as we all know, if you look well, you’re not really unwell.
So the help that I had asked for in regards to my spawn (as my carer) getting more support, came to a halt on the sentence, “you look well, so I’m going to close your case.” The only satisfaction that I gained from that last meeting was the look of fear in her eyes as I stared silently at her for a full two minutes and imagined taking away her very last breath with the aid of a mental Vulcan death grip. It didn’t work.
So the next time somebody tells me that I look well, they will probably have to call for an ambulance service at the same time, because murder WILL take place.