Taboo Series: Disability, being alone and this ‘Spirit of Christmas’ issue

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Taboo Series: Disability, being alone and this ‘Spirit of Christmas’ issue

 

christmas-tis-the-season-jolly-facebook-timeline-coverBy @ShaunyGibson – Used to be @ ShaunyNews

I know, I know, It’s Christmas and I probably should be on my sofa chilled out with a beer after Christmas dinner. Well sadly I can’t because of pain and all that amazing Jazz plus I don’t drink. What I suffer from is Fibromyalgia and ‘Fibro’ doesn’t know Christmas day from Pancake day it just keeps giving pain that is unbearable, the effects of Parkinson Disease and also Motor Neuron Disease and other really harsh disabilities like MS and ME and more. So for me I loved the day, loved to see my kids open presents and be with my Son, his partner and my Partner with my oldest son coming late with his partner

Fibromyalgia makes this time of the year almost impossible for people with made up invisible not hurting disabilities, disabilities that people in your life know more about than your Dr, I say that as it’s what society tells us, I find it strange that you often have to be in a wheelchair before someone will understand why you can’t visit them, I know people are dying, I know people who have died and people who have lost so this is where my own personal guilt comes into play, but as I am told by almost everyone, don’t think this way. Here are our symptoms: http://www.fmnetnews.com/fibro-basics/symptoms

Pain All Over – People describe fibromyalgia pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Muscle groups used the most may hurt more. In addition, the severity of regional pains can make your fibromyalgia symptoms worse. The pain is unimaginable if you don’t suffer Fibro. This is the part that many can’t live with and we see suicide happen. The pain is very hard to describe, the best I can do is ‘All over toothache’ others have other ways of explaining the pain, for me all over toothache pain is what I feel. I feel like I have JUST broken several bones or snapped muscles, but it is only all day every day 😀 so it’s cool really. Many stay depressed and suicidal, I have been there and back, lost friends and family over it, all this  b@stard illness does is take from us all. 3% of the World’s 7 Billion populous suffer from Fibro. In the UK we grade it 1 to 10. Many are 2/3 just having pain in one area, I was 10 and left the pain clinic as it was pointless but I still help the pain team with sitting and speaking to Dr’s and Pain experts from all over the World at the Ashley Ainsley Hospital in Edinburgh, it has a few large halls that sit a few hundred or more. So although I suffer I spend more time helping others. It’s the old adage “To help others is to help yourself”

Fatigue – Exhaustion can be one of the most incapacitating fibromyalgia symptoms. You may feel as though your arms and legs are weighted down by concrete blocks and your body may be so drained of energy that every task requires great effort. I can be wide awake then *PING* Sleeping or sleepy. Heavy dry eyes, can happen an hour or 2 after a good sleep or at night. So too much sleep and not enough sleep. A pain it is, waking early and sleeping early is all our goals but if we are in agony and it’s 3am we have to just deal with it. For me this is the most annoying probably. I think if I fix this (Like now) for good I will live better. But I am at the mercy of Fibro

Sleep Difficulties – It’s not just about falling asleep. Repeat arousals prevent you from reaching deep, restorative sleep, so you wake up feeling as though you have been hit by a Mack truck. An overnight sleep study may show symptoms of repeat arousals, but a specific sleep disorder may not be found. For the past 5 nights I have been asleep early and up early, BRILLIANT!!! Before and I am sure it will come back I am up a day, down a day, I am missing half my life sleeping. That hurts when you miss family as I do. This is the single most difficult one that none of our families can understand and all we really try to get them to get.

Brain Fog – Trouble concentrating, retaining new information, and word-finding are common fibromyalgia symptoms that seriously interfere with daily functioning. You may be easily distracted and this symptom appears to correspond to the severity of pain (as though the brain is consumed by the pain, limiting your ability to perform cognitive tasks). This is the Parkinson Disease area of the disease. I can be talking and half way through talking *GONE* 😀 What I was talking about just vanishes, with friends/family it’s ok as they remind me, with strangers it’s embarrassing and I don’t like that bit. I tend to just not talk much now to strangers unless it’s email or type chat. Just makes it easier. This is the one thing (Pain aside) we all hate, I have to leave notes on my PC/Laptop/Phone etc for things like “Go to the toilet” or “Take Medication”

Morning Stiffness (Now Now 😀) – You may wake up to enhanced muscle soreness with fibromyalgia, but you probably also feel more stiff than usual. The cause of these muscle symptoms is unknown, but warm water and gentle stretching usually help alleviate them. I can’t move much for an hour after awakening. Often I need a cup of tea and medication before I can go about my day. Sometimes I just have to get up and walk like I am made of cardboard in agony. Also amazing fun, lol

Muscle Knots, Cramping, Weakness – No matter how much you try to relax your muscles, they may feel tense. Many contain rope-like knots called my ofascial trigger points, making you more susceptible to muscle cramping and weakness.The pain of fibromyalgia may also be a source of muscle weakness. These are very similar to Motor Neuron Disease, I get this 24/7, my hamstrings, calf muscles are worse but anywhere we have muscles/tendons etc sufferer friends and I get pain a if there has been a partial tear in any given area, go to the hospital, get a scan, all good. Very hard to diagnose us, but they hooked me up to electrical nodes and made pain happen by pulling and pushing my muscles all over, it showed increased pain activity so proving the pain was there

Digestive Disorders – Constipation, diarrhoea, abdominal pain, gas and bloating, irritable bowel, and nausea are found in roughly 40 to 70% of fibromyalgia patients. Acid reflux and a slowed digestion are also common. If you take strong pain killers it’s important to take anti-acid tablets or you will ruin your insides badly.

Headaches/Migraines – Recurrent tension headaches or migraines are present in 50 to 70% of fibromyalgia patients. Headache symptoms are usually rated as severe, occur at least two times per week, and often have a migraine component. This head pain is partly due to trigger points in the shoulder, neck, and head muscles. I get thumping headaches daily and medication does very little, laying down in bed can be the only treatment

Balance Problems – Balance confidence is greatly reduced in people with fibromyalgia. Walking patterns are altered and the odds of falling are increased. I have feel a few times now, once I slipped and knocked myself out in the hall, woke up in Dunfermline Hospital, great fun! lol

Itchy/Burning Skin – Your skin may look normal or it may have itchy red bumps similar to hives. Burning pain, similar to a bad sunburn, is also common in fibromyalgia patients. I personally get ‘Burnt Skin Syndrome’ where it feels like you are in an oven

Other Strange Symptoms? – Do bright lights, sounds, or odours bother you? These symptoms could be part of your fibromyalgia. Learn more by reading our article, “Is Sensory Overload Part of Your Fibromyalgia?”

The reason I mention all this is because it seems the only time of the year any of us with Fibromyalgia or any kind of Chronic illness get approval from family is Christmas 😀 I don’t understand this. But overall we see people being nice to each other at Christmas. My oldest son was in the drive through at McDonalds yesterday and paid for the people in the car behind, about £5 or so but that is the ‘Spirit of Christmas’ When he told me I was so proud of him, that is EXACTLY what I brought Dean and Ryan up to be, decent young men, men who will notice others around them and know love and kindness

Now I don’t speak for myself I have a few Facebook groups I run and this one here for people with Chronic illnesses allows people to get help and it helps me. Knowing we are not alone helps greatly, I guess in any situation? https://www.facebook.com/groups/699321140156812/ I notice every Christmas people are smiling, opening doors for you, letting you drive out of a road or wherever. The spirit of Christmas is true there is no argument because come January everyone turns miserable again. During the festive period everyone is a saint but 2 weeks later we all go back to the grind and hatred starts again. I have always asked myself why can’t we all act like this all year? I know many through support groups in real life and online who find it impossible to be happy, some people are just sad and it’s an illness. It’s like a heroin addict, we jail them, why not help them? This is what I am getting at. We as a species have times when we help and show love and times where we all turn miserable, me included but to be fair I do try to laugh my way through life, we are here once so smile and live for God’s sake 😀

Anyway, hope you all had a brilliant Christmas and all my friends in the USA are having a good day. It is past 7pm here in Scotland now so nearly over. For West coast USA it’s just starting, in Australia it’s already boxing day at that side of the World. I will sit and smoke a cannabis joint tonight as it is the ONLY thing that takes my pain away for any amount to of time. And as this is ‘Taboo’ series why is it people can get blind drunk, hit others, spread STD’s, cause havoc in city centre’s all over the World, lead to partners fighting, society allows this, society says ‘This is ok’ Yet if a person say? Family see me type “I will smoke a cannabis joint” I will probably be judged. This is how backwards our World can be. Our World is truly one big ironic pantomime for sure

Here, a song that I hate and a statement from a movie 😀

Wham! – Last Christmas
Via MASmusik100 on You Tube

Keep the Change You Filthy Animal
Via r2k3982 on You Tube

Shaun

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Join Ace News Facebook pages: https://www.facebook.com/groups/acenewsservices/
ShaunyNews: https://www.facebook.com/groups/Shaunynews/
Living With Fibromyalgia: https://www.facebook.com/groups/699321140156812/
Scotland: https://www.facebook.com/groups/scot2.scot/
Celtic FC: http://thecelticnetwork.com/
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6 responses

  1. Thanks for the article! I had heard of “fibro” And some of the symptoms like the brain fog and stuff, but I feel like I a bit closer to understanding what it all implies and how devastating it can be! Now, I’m not going to throw you a pity party because I’m sure that is not what you want! And also because I believe you could still find comfort even in your trials and spending time pondering on our misfortunes is not the way to go! But I know you know this already it is clear!
    I would however love to know what techniques you use to stay away from the “pity thoughts”, and how you manage to keep the spirit of Christmas daily!
    Thanks again!

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      • That is really cool that laughter takes your thoughts away from the pain, I can see how that works!
        So what are some other ways you’ve experimented on to lessen the pain? Like physical activities, or social interactions? Maybe School, or Church, or clubs.

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      • Loud Music via a headset into both ears changes our brain patterns. Getting into a good movie or book.
        It takes will and huge amounts of concentration. All along the pain is there, you learn to not let it define us.
        I guess 16 years in now it’s trial and error…

        Hope if you are in pain something helps you

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