Have you ever had one of those days…?

Have you ever had one of those days/weeks/months/years where you think, what the fuck is the point?
It’s not just the relentless fatigue nor the unremitting pain, it’s being surrounded by a sea of faces and still feeling alone.
It’s the never ending doubts by some and the infinite judgements of others.
It’s the constant eye rolling and the non too quiet sighs.
It’s refusing to explain my illness because even if I do, I’ll be met by the self-prevailing wisdom of the “well I’m ill and I still managed to get out/work/exercise etc,’ the competitive nature of the “I’m sicker than you” brigade and the pig ignorance of the “there are people worse off than you’ fan club.
It’s the lack of support, the always having to be there for everyone even though there is no one there for you. It’s the old symptoms, the new symptoms, the intermittent symptoms and the permanent here to stay symptoms.
It’s mourning the past, ruing the present and fearing the future.
It’s everything and more all rolled into one and the constant thought that this is not how my life was meant to be.

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Dear Chronic Illness…

Dear Chronic illness(es), I’d love to say that it’s been a blast but then I’d be lying.
I think the time has come for us to call it quits. Listen, It’s not me, it’s you. You’ve been a big part of my life for 10 years now, but in the last 3-4 years, you’ve changed. You’ve become more aggressive, more controlling and your need to take over every inch of my existence is wearing me down both physically and mentally.
At first I tried to ignore what was going on. Back then, I was still afforded some freedom and a sense of normalcy, but now, now I feel trapped and weak. Because of your interference in my life, I am no longer the person that I used to be. Where there was once sunshine, now I see only darkness and the little flickering hope that used to posses a corner of my heart, that tiny glimmering light that indicated that all would be as it once was, has been blown away by a faceless breath.

I want my life back. I want to be normal again, FEEL normal again but I can’t do that with you still lingering around. You’ve taken so much from me already, my independence, my sense of self, my longing to see what the future holds. The only positive is that I’m bent but not broken. I will never allow you to fully break my spirit, although you’ve come bloody close.
I am tired of living this pathetic life of doubt and solitude and would be most grateful if you would untether these chains of ineptitude and crippling sorrow.
All I want is to be free to be me once again. I want to live and not merely survive, so if you could kindly piss off, I will forever be in your debt.

Lily.

The Miracle Cure

heal
verb
3rd person present: heals
to become sound or healthy again.
synonyms: make better, make well, cure, treat successfully, restore to health, get someone back on their feet, put someone on the road to recovery; More

I’ve just read an article that boasts of a cure that will “heal” the most hardiest of disorders. Vertigo, Lupus, Fatigue, Arthritis, Fibromyalgia, Thyroid Issues and many more, will now become a thing of the past, thanks to this miraculous creation. Now that’s quite a bold claim to make considering some of these conditions, so what is this extraordinary elixir that can do what many medical professional have, throughout the centuries failed to achieve? Thyme. Yep, you read that right, thyme.

Apparently, drinking this herb with a touch of honey everyday, will stop your bones from thinning, (arthritis) halt the deterioration of cartilage, repair tissue damage, (osteoarthritis) stop your immune system from attacking the healthy cells in your body, (Lupus) regulate your thyroxine levels, (Thyroid) and correct any neurological disorders that affect the structure or function of the brain or spinal cord. (Fibromyalgia)
Not only that, but it’s also great for multiple sclerosis and even Hashimoto’s.

Why then are we not bowing down and worshiping this aromatic perennial evergreen herb? Why is it not given on repeat prescription? Why isn’t there a treatment whereby this glorious plant can be administered intravenously? And why is there not a God dedicated to the wonders of the Thymus vulgaris? WHY?!
In all seriousness, I know that certain types of thyme have medicinal properties and contain antifungal, antibacterial and insecticidal qualities, and no doubt can help in soothing some of the symptoms of many serious medical conditions, but those are a type of thyme cultivated for medicinal use. The article that I read only mentions dry or fresh thyme and not the various kinds such as wild thyme, which research has shown can induce cell death in breast cancer cells. To suggest that it can therefore “heal” is a dangerous proposition to put forth. No amount of drinking thyme will stop my bones from deteriorating or stop my body from attacking and damaging its own tissues.

To claim that something can heal, preys on those who are desperate for an answer to their pain and brings expectation and hope. And when that doesn’t work out, it leaves behind depression and a sense of hopelessness.
If the article had stated that thyme was a useful herb that could help alleviate certain symptoms, I’d have no problem with it. It’s the word ‘heal’ that consigns it to the ‘quack’ pile of medical articles.

WARNING-Cuss laden rant in progress…

When the toilet was first invented in the 16th Century, customers all used the same piece of rag to wipe their delicate posteriors. Well today, I feel like that rag.

When I was younger, I was once told by a doctor that there was “no such thing as stopping breathing whilst you’re asleep. It simply isn’t possible.” I remember leaving her office feeling somewhat depressed, ignored, angry, suicidal and exhausted. I knew that I wasn’t imagining the fact that my breathing was being interrupted up to 30 times a night, or that I woke up several times gasping for air and unable to breathe, but that doctor made me feels so utterly worthless, that I never mentioned it again until years later and instead, continued to suffer in silence.

Nowadays, we all know that sleep apnoea exists as a very serious sleep disorder, as well as the danger that such a condition poses.
Today, I received a letter with the results of my recent sleep test, I mean, what the actual fuck?! It came back as negative for obstructive sleep ‘apnoea and nocturnal hypoventilation’ and now I feel as though history is repeating itself again. That I am not being heard or taken seriously. I am so pissed, I could spit in a Camel’s eye!
The goat felching boiled brained barnacle of a doctor, didn’t even list any of my medical conditions except for fibro and suggested that I be fitted for a mandibular advancement splint device to stop me from snoring. What a bunch of fuck-witted twattery!

I know that I have sleep apnoea. I have woken up gasping for breath, horrified at the thought that that night could be my last night on earth. I have felt the moment when my breathing has stopped and I’ve had to kick start life into my lungs by forcefully expelling what little air I have left. Both my mum and my womb-fruit has been witnessed to many an episode, but that beef-witted, maggot pie weasley arse-clown, is basing his diagnosis on 4 sodding hours of broken sleep. How is that bollockery akin to an in depth sleep study??!

There is no way in Hades that I’m accepting the results. I have fought long and hard and waited a lot of years just to be taken seriously and now some prat-faced testicle wants to tell me that my problems are due to snoring and that my fatigue stems only from a lack of vit D and iron and not the fact that I suffer from ME and CFS (along with several other conditions were fatigue is also a symptom). Well Dr Vladimir Yeasty Measled-Tosspot, better don some armour wear for our next meeting because it’s gonna be an all out battle of a war…the ignorant twat-waffler. If it comes down to it, I will by my own CPAP machine because I am so bloody tired of being ignored and made to feel as though I’m  some hysterical female suffering with a touch of the vapours, who doesn’t know the workings of her own body.

Okay, that ends my Medieval worded cuss laden rant for today.

The Problem With Fibro…

The problem with Fibromyalgia, is that it is a PR nightmare. Often seen as a trendy disease because “everyone has it”, it is often derided on TV programs, films and in newspaper articles, mediums which also portray those who are affected by it as something as a joke. This is made more so by the fact that there are no outward visible signs of the disease or that there aren’t any definitive blood tests, at least in the UK. (although there is a FM/A test in the US which costs just under 1k) Instead, diagnosis is made by a process of elimination as well the 18 Tender Point Test, the results which few ascertain, can be easily fabricated. Some class it as a modern day pandemic, a hypochondriac’s dream. And because many of its symptoms are often linked to other ailments such as lupus and arthritis, Fibro isn’t really seen as an illness at all, but rather a myriad of symptoms of something yet to be diagnosed.

Fibro’s PR isn’t made any better by the fact that half the medical profession doesn’t believe in it’s existence or insist that it is all in the mind. Something that a few sessions of CBT therapy will sort out. To talk about it is to risk ridicule and disbelief and thus the bad press is set to continue. Some even believe that to talk about it is to enable it. But to talk about it is not the same as enabling it. Talking about it does not continue the illness. As one woman told me, her family demanded that she not speak about her illness as she was “making it real.” But it is real and to talk about it is to bring about awareness and understanding of something that is a genuine and disabling condition to those who live with and suffer through it daily.

There is another problem which backs up the negative attention that Fibromyalgia garners, and that is the disunity among some Fibro groups. Instead of binding together under a common cause, arguments centre around whether it’s an auto-immune illness or not. Whether it is brought on by trauma, illness, injury, is hereditary or congenital, and there’s huge debate on what to call it. Is it a disorder, a disease, a condition, or just classified as widespread pain? Some of these discussion tend to become quite heated with people being cited as “not really having the disease” or being accused of faking it because they dare to have a differing opinion. So how then can those who know nothing about the condition make sense of it when there is so much discord going on within it’s own community?

When Lady Gaga made the announcement that she too suffered from Fibro, she was lauded by some as a possible saviour, a much needed advocate. Someone that the world would listen to and take seriously. She would be the one to put Fibromyalgia on the map. But soon, even she was drowning under a river of scorn as people proclaimed that it’s was okay for her to be ill because she had the money to afford the best medical treatment. How then could she speak out on behalf of the rest of us?

Until we stand together and cease to belittle one another, I fear that Fibromyalgia will never be taken seriously by the public at large and that the majority of us will continue to suffer with the indignity of being seen as “fakers.” We need to stand up and be counted, to come forward and to tell our stories. But above all, we need others to believe that this is real, that we are valid and so is our illness.

talking fibro

The Flu Who Stole Christmas.

Chronic illness is often likened to suffering from the flu 24 hours a day. So imagine having multiple chronic illnesses, plus the actual flu thrown on top, along with a dose of environmental allergies and a flare of TMJ.
Week 3 and I’m having to sleep with my head at an incline. This is to stop my inner organs from shooting out of my mouth and hitting the TV opposite whenever I am beset by a series of dry hacking coughs…which is often. Still, sleeping upright like an animated corpse, does seem to work. I now average a bout of violent coughing at maybe 3 bouts every 10 minutes, whereas if I were to lie down like a normal human being, a bout of OH MY GOD, THERE’S A DEMON SCRAPPING AWAY AT MY THROAT AND ANOTHER ABOUT TO BURST FORTH FROM MY RIBS, cough, usually occurs every few seconds.

dying

I did try to sleep in the prone position last night but was suddenly seized by a coughing fit so violent, that I thought my lungs were about to exit via my arse! I don’t think there’s ever been a time where my ribs have hurt both horizontally and vertically, or where my boobs have come together in such a calamitous collision as to cause a small tidal wave off the coast of Scotland whenever said coughing fit is underway.
Then there’s the mouth, an alimentary canal which is so dry, ancient Egyptians are still constructing Pyramids in my larynx. But don’t worry, the near constant postnasal drip of mucous, is providing a counterbalance to the arid conditions.

liam

And let’s not talk about the gunk that is currently clogging up my ears, (I fear it may be alien in nature) or the mountains of tissues breeding new life forms and hoarded under my pillow. Like Golem getting all protective about his ring, those crumpled pieces of snot papers have also become “MY PRECIOUSES!” For some reason, I derive some form of comfort from having them around…also, I can’t be bothered to get up and deposit them in the bin. But the worst thing has got to be the sinus infection. Every area of my face from my eyes and cheeks to my teeth and jaw, hurts and there have, I admit, been moments where I have contemplated ripping my face off in order to rub some numbing cream onto the infected sinews, muscles and tissues.

elf

Oh and I almost forgot the little men with pickaxes hammering a tunnel to my head by way of my nasal cavities, or the fact that every sodding thing I eat or drink, have taken up issue with their current place of abode, (my stomach) and are continually choosing to evict themselves via either my backdoor belly button or my face-hole…or both…at the same time. So yep, to say this Christmas has been memorable, would be an understatement in the extreme. Next stop, allergy season. I can’t wait!

My Son, My Strength.

Couldn’t sleep last night so spent the early hours of the morning talking to the Womb-Fruit who also couldn’t sleep. Amid our usual talk of stuff and nonsense, he admitted that sometimes, when he hears me crying, he often thinks about me and my “situation.” I asked what he thought about and he answered “you before and you now…but the thought doesn’t last for long.” That kinda ripped at my heart a little.
I can’t imagine how a kid with Aspergers, can even begin to process how his once able and fun-loving mum could turn into…well, me, or how his life, which had once been that of a carefree child, was now one where he was responsible for the well-being of the woman who gave him that life in the first place.

As usual, guilt reared it’s ugly head and I wanted to apologise for being the parent that I was. In my darkest days, I feel an overwhelming sense of regret that he was ever saddled with a mum like me, because in my eyes, he deserves so much more than I can ever give him. Instead, I asked why the thoughts were so fleeting. Was it because the memories of life before were too painful, or was it a case of there’s nothing that can be done to change things so why keep thinking about it? He replied that it was both.
The thing is we’ve never really spoken about when I became ill and how life has changed significantly for the both of us, so this morning was a first. I told him that my tears had nothing to do with him, that just every now and then, the reality of what life has become suddenly hits.

We then talked about all the things that we used to do and the things that we wish we could still do, and lamented the things that we would never do. But where I have a dwindling hope that things will one day change, he was full of optimism that it could yet still happen. I had to tell him how proud I was of him and that I was glad that he had found new friends at college and was finally getting out more and living the life of a young adult. I hated the need he had to stay by my side in case anything happened, although he always protested that it was something that he wanted to do.
He’s out tomorrow with friends and again over the weekend with his dad, but not before assuring me that he will cook enough food for the two days to ensure that I won’t have to do anything. How can I not be proud of such a thoughtful and caring young man? A 16 year old who since the age of 7 when he took on the role of carer, has been my saviour, my strength and my reason to continue to carry on. In that respect, I count myself one of the luckiest women alive.