The funny thing about chronic illness is the isolation. You donāt expect it, it just creeps up on you slowly, until thatās all there is. Iām sure that if you approached anyone and told them about the type of loneliness theyāre about to feel during a chronic illness, theyād laugh you off and never dream that their friends or family could abandon them. But of course, they do. Whether they mean to or not. The kind, supportive people (of which there are hundreds) might wish you well and visit, listening when you need to talk or cry and reappearing once youāve recovered, but, ultimately, they have their own lives to live. Thereās not much room in a regular personās life for someone who struggles to walk or go outside, and Iām far too proud and I love them far too much to impose upon their adventures by restricting them. Then, thereās the spiteful people. Thereās only one or two, but they have just as much or more impact than the kind people. Theyāre the embodiment of all of your self-doubts, of all of the whispers at the back of your head that damage your self-confidence and insist that no-one wants your crippled arse at a party anyway. Theyāre ones that sneer about you being lazy or not wanting to work, that somehow know just the right thing to say to make you give up all hope for an hour or two. I think I wrote my story for them, to show them that I want to be better, that I want desperately to contribute to society again. Iām well aware that it was ridiculous to write for the spiteful people. Theyāre utterly below contempt, but below is my story anyway. Itās as raw as my journal writing gets. Writing it helped me to cope with the emotions that are overwhelming me and to distract me from this awful time of day that I always seem to be awake at. Besides, it seems to be fashionable to be brave and tell people how you really are in the name of awareness. --------- Itās 01:54 on 14 October 2015 and Iāve finally cracked. The emotion, the pain, the sheer desperate isolation that has become my life has finally overcome me. A therapist once told me that there is a fire that burns deep within our chests. This fire waxes and wanes throughout our lives. It is the fire that pushes us to keep fighting, the fire that burns constantly, burns as if there will never be anything to extinguish it. When life becomes hard and when despair sinks in, this fire will let off a spark, and that spark will narrow our eyes, strengthen our resolve and push us to make life better, in whatever small way that we can. This always made sense to me, and this image has helped me push through all manner of lifeās challenges. Typing sends splintering, red hot agony down my forearms. I can feel my bones splintering and shattering. The only reason Iām typing now is that my fire has let off one of those sparks. Tonight, I collapsed into a hopeless pile on my bed, sobbing and desperately wishing for an end. My fire sent out a spark. One last desperate spark. The spark compelled me to write. I have Chronic Fatigue Syndrome. My first symptom of a flare is swollen lymph nodes. For those of you that donāt know, a flare is a re-occurrence of symptoms associated with a chronic condition. I have included a list of symptoms below (which I have listed in order that they appear) to demonstrate the effects of a Chronic Fatigue flare: 1. Swollen lymph nodes. 2. Pain, including, but not limited to, pins and needles or electric shock-like sensations, cluster headaches, migraine, muscular aches, joint or bone pain. 3. Fatigue. 4. Confusion. 5. Insomnia. 6. Night terrors. 7. Muscle weakness. 8. Impaired co-ordination. 9. Walking difficulties. The above symptoms always appear in this order. Their severity depends on two things; how severe the flare is, and the self-care steps that I have taken. To reduce their severity, or even stop my body from progressing to the next symptom, I may take steps such as ensuring I maintain a healthy diet or ensuring I complete a therapeutic exercise regime. Except, sometimes, it doesnāt matter what I do. Take my latest flare as an example. At the beginning of July, I noticed my lymph nodes under my left arm and in my throat beginning to swell, so I ate a clean diet, maintained my exercise routine and ensured that I got an adequate amount of rest. I loved my life, my gym routine, and the toned, muscular appearance of my body. I wasnāt about to let anything disrupt my plans for competing in bodybuilding competitions, let alone my own broken central nervous system. So, as the nodes continued to swell, I visited my GP and expressed my concerns. My GP assured me that there was nothing to be worried about and that the swelling was probably due to the stress of starting a new job, so I continued about my daily business. Then, I got a UTI. I visited my GP again, who prescribed antibiotics. These proved ineffective and my lymph nodes were still swollen, so I visited my GP again, who prescribed a second course of (slightly different) antibiotics. These helped my symptoms a little, so, again, I continued about my daily life. We are now at the very end of July, and disaster has struck. No-one knew this at the time, but my lymph nodes have become so swollen and blocked by infection that a small clot of necrotic tissue has made its way to my brain. I collapsed in my kitchen, the fifth blackout in a week. After the receptionist at my GPās office advised me to call 111, an ambulance was sent for me. Upon arrival at the hospital, it was determined that I had had a small brain hemorrhage and a seizure. I had obviously called in sick to my new job as soon as I had regained consciousness on my kitchen floor, and I was advised by the A&E doctor to go home and rest, which I did for the next two working days preceding the weekend. I continued to rest through the weekend and returned to work on the Monday, where I summarily lost my job due to the work I had missed while suffering from my hemorrhage. We are now at the very beginning of August, and my lymph nodes are still swollen. More swollen, and beginning to look angry. I returned to my GP and was, again, sent home to rest. My flare symptoms were progressing, and we had now passed pain and moved onto fatigue. I havenāt been able to go to the gym in weeks. I tried once, but lost three days to weakness and fatigue. I tell myself it will get easier. Two weeks or so later, I am frustrated. I drag myself out of bed and drink two cans of Monster Energy, resolved to wander around Meadowhall for an hour. It was a Saturday, and perhaps I would treat myself to my favourite Costa Coffee treat: a tall gingerbread latte with an extra shot of expresso and plenty of sugar. Except, as I was queuing for my favourite treat... the pain began. It was unlike any pain I had ever felt before. Rock hard and red hot, it throbbed and pulsated under my skin, pushing against my shin bone and making it difficult to remain standing. Every nerve in my lower left leg screamed for me to collapse to the floor, bend double and clutch my poor leg, moaning and massaging at it until it abated. Except I couldnāt. So, I grabbed my drink and resolved to walk it off. The pain grew. I made it ten steps to the nearest bench, not daring to look. When I finally looked down, I saw two large lumps under my skinny jeans. I swear I could see them pulsating. The pain was unbearable. It made the shin splints that had once prevented me from running feel like pin-pricks. I sat on that bench and tried to look normal. My eyes watered, my teeth ground together and the pain blistered, burning and swelling and pulsating under my skin, until, finally, it began to abate. I stood, cursing once more as the pain returned, and limped to my car. I donāt know how I drove, but I did. I went to my boyfriendās house, which was closer than mine, and winced as I peeled the fabric away from my skin. It was worse than Iād imagined, much worse. Angry and red, the two lymph nodes in my lower leg had swollen to the size of two pence pieces. Unable to stand anything, including even the fabric of a blanket or my jeans touching the furious red skin, I borrowed some shorts and elevated my leg to a point where there was no pain and watched some television in my boyfriendās bed. When we got up to go outside to smoke, lowering my leg to the floor was enough to make me cry out. Barely able to stand, I hobbled downstairs and back up, and let the pain ease me into a fitful sleep. Sunday now, and I want to scream. The pain is worse. Unbearable. I swallow four tramadol tablets before I get out of bed. I stifle a scream as I attempt to stand an hour later. It really feels like the lump on my leg is pushing so hard against the bone that itās breaking. I donāt remember the rest of the day, and I donāt remember much of the Bank Holiday Monday, except my mother holding me up as I limp into the pub. I canāt stand and cook, I can barely think for the pain, so weāve gone out for food. I enjoy my meal with my leg propped up discretely under the table. It really doesnāt hurt too bad when I elevate it. Monday night passes in a fit of agony and spreading infection. My leg looks like it has blood poisoning. I tell myself how ridiculous this sounds. Surely an infected lymph node that I only noticed on Saturday canāt be blood poisoning by Monday? Except it is. I count down the hours until the GP opens on the Tuesday morning and book an emergency appointment with my GP. The antibiotics prescribed donāt help. Itās Thursday now and the redness is spreading, branching off from two huge solid lumps on my leg that are now each the size of my palms. The lumps are purple and they leak tablespoons of necrotic tissue and black, tarry blood at the slightest disturbance. The pain is unlike anything I could ever have imagined. I knew I wasnāt dying, but I hoped I was. The days pass and I lie in bed, whimpering and praying that it be over soon. I donāt sleep, I donāt read, I donāt do anything. There is only the pain. At some point, the GP gave me a second course of antibiotics to take with the first. The lumps shrink, the blood that leaks from the wounds on my leg turns from black to red, and, slowly, the pain begins to recede. I thank every god and every star that I can think of and begin to plan re-shaping my life. After all, I havenāt got a job now, and my money is starting to run out. Except that it isnāt over. Itās just beginning. The last of September passes before I can blink. The pain is still there, quiet and everlasting, but bearable. Thereās been a few infections, a few more courses of treatment, but the fatigue is now the worst thing. Iām barely conscious most of the time. I fall asleep at midnight and wake at 6pm, or sometimes even 11pm, with no memory of any alarms sounding. āTomorrow will be easierā is now my daily mantra. At some point before October, I realise that the lumps on my leg havenāt disappeared, but theyāre growing again. And itās spreading. I wake up one morning and realise my lymph nodes havenāt shrunk since July. I try not to worry. I wake up another morning and realise that the lumps in my armpit are larger. Purple. Leaking black blood. I visit the out-of-hours GP at the hospital and they say āLUPUSā. I visit my GP the next morning and they say āDIABETESā and 'LYMPHOMA'. I beg for antibiotics. I know the pain thatās coming. Itās spreading. Itās everywhere. Itās on both legs now, large purple welts that cover my lower legs, bikini line and underarms. Itās different because thereās no clear wound on these lumps, but itās coming, and itās coming worse than it ever was in my lower left leg. Every hour thereās a new lump. Iām calling my GP constantly. Iāve entered a semi-conscious haze of pain and weakness and Iām begging for pain relief, for any kind of medication and my blood test results. They say thereās no lymphoma, they say thereās no diabetes, so theyāll trial antibiotics for a few months and review my condition. I donāt care. I donāt care what they say. I donāt care that the blood poisoning is everywhere. I donāt care that thereās necrotic tissue circulating all over my body with nowhere to go. I donāt care that I havenāt been allowed outdoors in weeks because my lymph nodes have swelled to the point of shutting down my entire immune system. I donāt care that my lymph nodes threw a clot of necrotic tissue and caused a brain hemorrhage. I donāt even care that Iām at risk of another brain hemorrhage. I only care about the pain. Itās consuming me now. Itās all there is. I gobble my medication as one day bleeds into another and the pain takes away one thing after another. One day I canāt wear a bra. The next I realise I havenāt slept in days because of the pain. The next I canāt brush my hair. The next I canāt bathe. The next I canāt sit up. The next I can barely even move. Suddenly, itās the 14th. Of October. The painās abating now, but Iāve realised that Iāve lost three months and all but an hour of today. The pain and the weakness still hold me in an iron grip. My ātomorrow will be betterā mantra is gone. It wonāt be better tomorrow. Or the day after that. Itās been three months. My skin is scarred purple by the necrosis. I counted. Twenty-three scars. The lumps in my armpit are still there. The lymph node above my naval is still rock hard, making eating without nausea impossible. The bones in my lower left leg still feel like theyāre being slowly snapped in two. Iām two stone lighter. My muscle tone is gone. My abdominal muscles feel torn. I canāt push myself into a sitting position without agony. There are phantom itches in several spots of my body. It feels like spiders crawling on my skin. All of my joints feel swollen to the point of exploding outwards. There's something invisible and impossibly strong wrapped around my chest and shoulders, crushing my bones and making breathing difficult. I donāt sleep. I just lie on my bed, half-conscious and in that blistering, splintering agony that is unlike anything Iāve felt before. I donāt know how to carry on.
gamechangershow
gummygunk
romaincrisis
germansingergirl
discoholicmusic