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Friday, 14 June 2013

No-one Youer Than You


If you have a disabling chronic illness, the little things like having a clean house, or wearing high heels, does not matter as much as it did before; your life is about getting to your medical appointments, taking medication, resting, supportive therapies and arguing with your healthcare providers for the best care. And if you're like me, I spend most of my life in pyjamas. It is all about what you can do, and seeking comfort.

It is rather difficult to scrub the house clean or twirl about in high heels all day, when you wake up feeling like you have been subjected to medieval torture and you can barely make it to the toilet without using up all your spoons and needing yet another nap afterwards. It is also rather difficult to feel glamorous when sweat clings to you like dirt, with joints puffed out in angry purples and reds, and being covered with artistic-looking and unusual rashes; you've also not shaved your legs in weeks and feel so constipated, it feels like you are sitting on a cactus.  You can sure as hell bet that Vogue will not be contacting you any time soon.


I have had lupus and myositis for years, but it is only in the last few years that I have become increasingly debilitated by them. The house, always used to be clean; every day I would scrub it clean from top-to-bottom and everything would be clean, shiny and orderly. It used to bother me, because I was fed up of  spending my life in bed and watching the world carry on without me. I am currently bedridden and my personal life is a huge tangled mess, I am anxious, broke and have recently lost some dear friends. I have new worrying symptoms developing and I cannot get the help I need from the very people who are meant to help me. Things do not look good, but it is not the end of the world. 


"As for me, I will always have hope" ~ Psalm 71:14



A few years ago, I could not have coped with all that; it would have broken me. But in the last few years, I have had a lot of time to think and have learned much; that there are far more important things in life than having a clean house and beautiful shoes and most importantly, that there is always hope, no matter what. No matter how close you feel to giving up, you will never give up. Not now, not ever. You are much stronger than you realise. Of course you are strong; no-one else in our position could fight as hard as we do. We fight for our lives and no matter how close we come to the edge, we do not slip over it. Everyday, I wake up feeling lucky to be alive. I see the innocent birds chirruping happily on the naked black branches through the windows, fully immersed in life and survival. They treasure every single second of life. They do not worry about dying, but they know that they must survive and stay alive for as long as they can.

And that is what we do, we survive. That is all we can do, regardless of whether or not the house is clean, or if we live in our PJs.

Survival is not just about being strong and winning one battle after another, it is also about accepting both the good and bad days, and accepting that you will get days where you do not feel so strong. It does not mean that we are weak, or that we are failures. The bad days make those good days so much more special, and when we overcome those bad days, we get stronger each time. Survival is also about accepting yourself for who you are, and not berating yourself for being what you are not. 

As Dr Seuss said "Today you are You, that is truer than true. There is no one alive who is Youer than You.”

Whenever you feel like you cannot cope, or you feel like you're about to give up, place your hand over your heart. With each heart beat, you get that little bit more stronger each time. You are a survivor. 

Most importantly, you are alive and that heart beating under your hand is your purpose. 


Sunday, 9 June 2013

The Prisoner of Fear

Life with anxiety is like walking across a tight-rope. If you lose your balance, you fall off and lose control. And during those times you do have balance, you are afraid of falling off. 

When we feel threatened, fear releases adrenalin and other hormones. Adrenalin prepares the body for 'fight or flight', increasing your heart rate and your breathing to provide for the increased oxygen demands required for flight; your gastrointestinal systems m temporarily shuts down as it is not needed for fight or flight; you become hyper-alert and your senses heighten, so that you are ready to respond to dangers; and sweating cools the body down while we run from the 'danger' (muscles generate heat when moving). These changes ensure that we are prepared to fight or run. "This response is useful for protecting you against physical dangers...The response is not so useful if you want to run away from exams, public speaking, a driving test, or having an injection." *

Anxiety is when the body inappropriately prepares for fight or flight. Your heart beats very fast, you have a dry mouth, your hands are sweaty, you're hyper-vigilant and paranoid, you lose your appetite and you feel like something very bad is about to happen. You are terrified you will fall off your tight rope and lose control. You fear that the world is about to end. You feel like you are going crazy. Everything seems much worse than it is. It is perfectly natural to get anxious times like these - you don't have to be suffering with an anxiety disorder to be anxious. Anxiety can affect anyone. But when the anxiety takes over, becoming a regular thing and interfering with your daily life, you may be suffering from an anxiety disorder.

In 2010, my anxiety was so severe that I was unable to leave the house for months. I thought that if I left the house, I would die. Light and sound frightened me; the outside world deafened and blinded me. The world seemed dangerous and strange to me. Every bad that has happened to me in life has happened beyond these walls...I could not just 'go outside for some fresh air, you'll feel better', because quite simply, it was impossible.

The charity Anxiety UK say that "Generalised anxiety disorder (GAD) can be defined as a disorder in which the sufferer feels in a constant state of high anxiety." They add that what makes GAD different from 'normal', everyday worrying is "that the worry is prolonged (it lasts for over 6 months), and the level of worry is out of proportion to the risk."

Anxiety UK lists the most common symptoms of anxiety as:

  • Increased heart rate 
  • Increased muscle tension
  • “Jelly legs” 
  • Tingling in the hands and feet 
  • Hyperventilation
  • Dizziness 
  • Difficulty in breathing
  • Wanting to use the toilet more often
  • Feeling sick
  • Tight band across the chest area
  • Tension headaches
  • Hot flushes
  • Increased perspiration
  • Dry mouth 
  • Shaking 
  • Choking sensations 
  • Palpitations

GAD can also "cause problems with sleep, ability to maintain a job as well as impact close relationships."

The two main forms of treatment for generalised anxiety disorder (GAD) are psychological therapies and/or medications such as anti-depressants and sedatives, depending on your case. The most effective kind of talking therapy is thought to be Cognitive behavioural therapy (CBT), which helps you understand your anxiety and teaches you useful coping mechanisms -it works by helping you identify unhelpful thoughts and behavioural patterns and then working to overcome them.


I am waiting for psychological therapies (I have been for a very long time!) but I am taking an antidepressant called sertraline (Zoloft); which helps, but over time it is losing it efficacy because my brain can tolerate more and more of it. Sertraline is an SSRI (Selective Serotonin Reuptake Inhibitor); it is from the same family of meds that include (fluoxetine) Prozac, citalopram, and others.


Another type of anti-depressant, SNRIs (Serotonin and noradrenaline reuptake inhibitors) may be prescribed if you are not prescribed SSRIs. These medications work on the chemistry of the brain by increasing serotonin levels (SNRIs also increase noradrenaline levels in the brain). SNRIs include vanlafaxine (Effexor), Duloxetine (Cymbalta) and others.

Other medications that may be prescribed are pregabalin (an anti-convulsant thought to be effective in treating anxiety) or benzodiazepines (sedatives such as diazepam (Valium). Benzos are very effective, fast-acting meds with a short half-life, but many doctors are reluctant to prescribe them for long periods or not prescribe them at all as they are known to be quite addictive.


Living with anxiety is not pretty and it is impossible to put a pretty dress on it. But it can be managed. Don't suffer in silence. Please go to your doctor if you're experiencing chronic anxiety, because you need relief from the daily torture of anxiety. You may find that managing your anxiety will help improve the symptoms of your physical illnesses. Good luck! 

Sunday, 2 June 2013

Lupus Awareness Month Facts


These are the Lupus Awareness Month infographics that I posted daily on The World According to Lupus Facebook page. Please feel free to copy & paste, and share!