Not-so-happy Chronic Illness 4th year Anniversary to me!
4 years this month (back in oct 2011) after months of feeling generally unwell a test showed that I had glandular fever in the past, it wasn’t currently present in my blood-but I never recovered. I had constant classic flu like symptoms, swollen glands, recurrent tonsillitis, post-exertional malaise and fatigue/exhaustion which never went even after a good sleep. At this point I wasn’t in pain; I developed chronic fatigue syndrome. It didn’t take long, but my health gradually got worse; I started to collapse and paralyse whilst at school, struggled with the stairs and began to experience daily chronic pain as well as battling the fatigue- it fluctuated, some days were worse than others but it was a daily battle just to get through a school day. I was then diagnosed with Myalgic Encephalomyelitis (M.E) (which causes persistent muscle pain, uncontrollable spasms, paralysis, cognitive dysfunction, joint pain and swelling,migraines and light sensitivity, plus the chronic fatigue symptoms) and a couple months later Fibromyalgia. Which added musculoskeletal pain, hyperalgesia (sensitivity when touched), allodynia, pressure points, voodoo doll type sensations; paraesthesia-tingling, burning, stabbing, itching and numbness to my list of symptoms. Both ME and Fibro are autoimmune diseases. I stopped and started dance, I pushed myself and danced my heart out until I couldn’t anymore. I missed a lot of school in year 9,10, and missed more than half of year11, but I worked hard to get my 5 GCSE’s. I had a 14 week summer holiday to rest up and prepare myself for my second best college choice of fashion design. I never made it to dance collage but I knew I needed a back up in life anyway, so I enrolled in a course that I would enjoy. The first couple of months went quite well, the work load was very demanding, the early mornings were difficult and just getting out of bed every morning was painful and incredibly hard. I fell behind a couple of weeks or so, but it was manageable.
After Christmas it basically went down hill from then. I didn’t have many “good” days at all, my health was deteriorating, I had weeks and months off collage, I missed college trips, briefs and missed deadlines- I was drowned in work. even with pure determination it was impossible to catch up. I got to the point of where I couldn’t physically push my foot down on the sewing machine peddle, or even sit up for more than 15 minuets to finish a sketch before my hands clawed. So I was withdrawn from the course.I couldn’t sit, stand or walk at all and spent months bedbound and living life lying down in severe pain and paralysis with no control over my body.
After months of just getting worse, with a heart rate of 130bpm led down, chest pains, palpations, dizziness, blurred and double vision, blood pooling, poor temperature control, fainting, limited oxygen and blood flow to the brain, bladder retention and gastrointestinal dysfunction I met the most incredible doctor who after admitting me to the heart institute diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS) which I knew very well about but no medical professional would believe me. It’s an illness of the autonomic nervous system. I was put on heart meds and within a couple of weeks I felt a noticeable difference. I felt my blood pump properly throughout my body and my vision was back to normal. After 5 weeks of rehabilitation I managed to be up standing and walking a couple of meters with a Zimmer frame. Within a couple of weeks of being home I crashed, but I could tell it was only a flare and within a couple of weeks I got over it and got back to my ‘normal’ ill self. But then, slowly, all the symptoms began to crawl themselves back into my body and my life, not a flare this time, just deterioration. Paralysis is back at it’s strongest, and it’s even made it’s way to my right arm and occasionally my left hand. Pain is unbearable, my ME, fibromyalgia and POTS are all at war with each other. I haven’t stood with my frame at all even with another 3 Physios trying to hold me up in 3 1/2 weeks- I only managed to stand with aid a couple times a week a month before that. My limbs are heavy, I can’t twitch my feet. I’ve lost my appetite, I’ve lost a ton of weight. But what I haven’t lost is my determination and will power. I can and I will improve my health although the facts are that I will never recover from this. I will improve my quality of life no matter how hard it is. I will walk unaided again. It will get better. I won’t give up.
Oh what I’d do to be as ill as I was back at school. Although it was difficult back then, I could easily live life with it at that what I call ‘mild’ level. Anything is better than this severe living hell.
One of my friends who fights chronic pain asked me how I cope with pain and illness on a daily basis, so I thought I should share in hope that it will help somebody else out.
I’ve built up my own techniques with dealing chronic illness over the years. When I’m at my very worse ( lifeless crying mess with pain being a crazy 9-10) I always close my eyes , just breathe and visualise my self on stage performing a lyrical dance with raw emotion and just dancing my heart out. It’s a massive distraction, I could do it for hours and hours, even though it takes more energy out of me and I become a little more weaker and more brain fogged I’ve found that it’s really helped me cope and to not focus or dwell on the pain. Also, I visualise myself snorkelling in the underground river in Mexico- it keeps me calm and relaxed when things get scary ( like when paramedics thought I was having a stroke) months of paralysis or when I think bad thoughts about being so severe for ever. Some people might find this bizarre, but I’ve found it to be the best strategy coping with constant agony. When the pain is centre stage It helps me to stay determined and focused on my dreams, recovery and goals keeping the pain out of the spotlight for a little while.
If you fight a chronic illness maybe you could try these techniques, but using something personal, close to you and what you really love? This could be you visualising yourself doing a hobbie or even walking down the street soaking up the surroundings from the comfort of your own home.
When things like pain gets really bad we’ve got to tell ourselves that nothing bad is going to happen. ( before I was diagnosed I was scared, confused and thought I was dying- and I wasn’t anywhere near as bad as I am now) And although it’s not ‘normal’ it’s become our normal. We’ve got no choice but to accept it and fight it in order to move on ( accepting it doesn’t mean you’re being negative and going to be like this for the rest of your life- it’s just the part if the process you need to do, other wise you’ll be running in circles for a long time pretending it’s not real when it’s the most realist part of your life.)
You’ve got to stay true to your self.
October is Dysautonomia awareness months. For those of you who may be thinking “dysauto-what?” – dysautonomia is an umbrella term used to describe different medical conditions that cause a malfunction of a person’s autonomic nervous system. Even though most people have never heard this term, dysautonomia is actually very common. Some forms of dysautonomia are fairly mild, while other forms can be debilitating, or even fatal. increasing awareness of this group of conditions, so that someday “dysautonomia” will be a well known word, even if it is really hard to pronounce. Postural Orthostatic Tachycardia Syndrome (POTS) is one of the syndromes under that umbrella. It’s an abnormality of the autonomic nervous system. The autonomic nervous system is in charge of all bodily functions that we don’t have to think about, such as:
Heart rate and blood pressure regulation
Digestion and Bladder control.
Other symptoms include;
and double vision •chest pain
and palpations •tinnitus •head pressure pains •blood pooling •poor circulation –What should happen to my blood when I stand up?–
When a healthy person stands up, blood vessels contract and heart rate increases slightly to maintain blood supply to heart and brain. –What happens when I have PoTS and stand up?– In POTS, this automatic adjustment to upright posture is not working correctly, resulting in an excessive rise in heart rate, increased norepinephrine in the blood and altered blood flow to the brain causing a cocktail of symptoms.
#posturalorthostatictachycardiasyndrome can be dangerous if left severe due to drastic changes in heart rate. When the heart is beating at constant 130 Bpm instead of 60-80 it can cause damage to the heart. Causing it to shrink and the muscles to weaken.
“POTS patients have reported to suffer from a degree of functional impairment similar to that seen in conditions such as COPD and congestive heart failure” yet patients are told that they are faking or exaggerating their symptoms and are not taken seriously.
This week is #invisibleillnessawarenessweek. Sometimes on the outside someone who suffers from a debilitating chronic illness may look ‘normal’ or ‘healthy’, especially when wearing make up, masking the dull and pale complexion from many daily struggles and long painsomnia nights. On the inside of a chronic illness fighter their body is broken. Their body is failing them no matter how hard they try, no matter what mindset they have.There are different levels of severities, but every chronic illness fighter experiences some level of chronic pain. (Chronic meaning persistent and long lasting.) none of which is easy to handle. Each and every chronic illness fighter battles and takes on each and every day with a smile on there face; trying to live a normal life, trying to not become a burden on their family and friends.
Some people question if the chronic illness fighter is ill at all and are rude and hurtful all because of lack of understanding and just because the fighter is always putting on a brave face. They don’t want sympathy they just want people to listen and understand. Understand that even under that smile they are hurting. They are scared. Understand they have limits. To understand that their health is unpredictable not the fighter themselves! And to understand their life’s have been turned upside down, shattering dreams, loosing there jobs, loosing friends, and loosing there old healthy life which every healthy person takes for granted.
My illnesses are not exactly invisible because I use a wheelchair. But there are some people who don’t need to use any medical equipment/ support and are still unwell and fighting hard.
Take time to listen, and don’t judge on what you don’t know or on appearance. Take time to ask people about their condition. It will open your eyes to see how visible and how challenging their journey really is. #awarenessmatters #chronicillness