The period between school terms went by in a purple haze, taking with it, Prince. Fans woke in shock to hear the news of his passing last week. This year has taken so many individuals in the arts, and it’s only April!
The holidays were divided between time at home, and being out. My daughter caught up with a few of her gorgeous friends, and it made my heart soar to witness the bonds deepening. The girls put down their electronic devices and made up dances and spells, plays and songs. We also went to plays, including The Peasant Prince, and Cautionary Tales for Children at the Sydney Opera House. It starred the extraordinary Virginia Gay. She held my daughter spellbound.
I was gifted these divine bird pegs by a friend. I have written about this friend before. A nurse, she has had healthissues the past few years, and has astounded me yet again, by putting her hand up to support a local lady as she flies to Singapore. This young lady has MS, and her symptoms have escalated. She has gone to Singapore for intensive chemotherapy and stem cell treatment. I am thinking of both these valiant women. They will be in my heart every time I peg an item on my clothes line. My friend Diana Reynolds is an artist, and she gifted my daughter and I this enchanted painting. It has pride of place in our home school room, where we get to admire it daily. To check out more of Diana’s work, click here.
My MRI results weren’t what I wanted them to be. I had hoped to receive a procedure known as a discogram, to shrink my remaining discs. It was found that they had all desiccated, which explains why I wince every time a bus or car I am travelling in hits a bump. I have no shock-absorbers! I wish it were merely a case of changing the shock-pads! There are many more issues, which I have neither the time or inclination to see to at the moment. I only had one day in bed throughout the holidays, so I am relieved. I carried on, throughout social occasions sometimes with the aid of a stiff drink and for that I am grateful. It is a nasty, merciless agony, which has grown into a monster. I humour it; I temper its fury and I promise it the world if it will just let me do what I need to do. When my daughter is a little older, I will have that longed-for overhaul. I will admire the bird pegs, and the symbolism behind them. They have the ability to fly, and yet they are anchored. Perhaps it’s a comfort, behind grounded. They know that they have a choice.
Term 2 has just begin in Sydney, and I look forward to many more adventures. You could live for a thousand years and still not experience all that there is in this world. I had a conversation with a friend who is extremely ill. She told me her simple wishes for the next year or so. In light of her disclosure, I am going to apply for a passport. Life is too damned short and it flies by like a bird unanchored. Pain and illness, nor nothing else is going to stop the experience of new horizons. It mustn’t.
There is never enough time, have you found that too? As an aside, we often tell ourselves that now isn’t the right time. I ask myself, when will be the right time? Do we wait for the planets to be aligned? Sometimes, you have to plunge straight in. I don’t know where time goes, I honestly don’t. 24 hours has glorious potential when I wake at 5am, but I soon run out of sand. My daughter and I are planning on opening an Etsy shop by the end of the year. I have a desperate need to take her to the opera, the theatre, each and every cove and parkland around Sydney. I can’t sit still. I am afraid to stop. The truth is, I don’t know how to anymore. I find my release by helping her locate her point of peace. We went and saw The Peasant Prince yesterday at the Monkey Baa Theatre, and I watched the joy on her face as she “got” the lesson regarding never giving up, believing in yourself, and trusting your instincts. I realized that my point of peace is wherever she is.
I am sometimes terrified of failing her. The worst moment of my life was when I almost died after surgery when she was three years old. They let her ride with me on the trolley, and she stroked my hair on the way to theatre. I am her teacher, her guide and her parent. I am everything to her. I have been putting off having medical tests because I am quietly afraid. I have been waking in the middle of the night, crying in pain. People don’t witness this war going on within my body. It is getting worse. If I fall down, there is nobody to pick up the gauntlet. What occurred with my last surgery scarred me. It was close. I had bigger surgeries, before I had her, but I was filled with the bravado of youth and had nothing left to lose. Now I have everything. I keep on keeping on, but shall get the tests done and see a surgeon. I am on Lyrica at present. I don’t know if you know of it. It was designed for epilepsy, though is also used for neurological pain. It has knocked me about as I get used to it! I am willing to try anything. The bone and metal shards left in my spinal canal literally feel as if I have been knifed in the back. I guess I had been, many years ago.
My daughter is on school holidays, and as we walked to the park today, I stumbled. I told her to go ahead as we were meeting friends at a playground. After she left, I looked down, and there was this nest.
Lovingly created, the chicks had flown and it was discarded. I picked it up, and carried it to the playground. I have always found nests to be my symbol of hope. One dropped to my feet when I was despondent during IVF. I still have it. Every time I have been in hospital, a dove has perched on the windowsill of my room. It can’t be coincidence. As I caught sight of my daughter playing with her friends, the pain diminished. I brought the discarded nest home with me. My evenings may be filled with pain and I may no longer be able to sit on a bench without back support. My lungs may struggle, and I may find it all hard and lonely. However, when I look at a nest or a bird, my resolve strengthens.
Sometimes we have to grab time back; either that or smash the hourglass. Sometimes, time can seem to stop. It does for me when I see a transcendent performance, or delight in the antics of my child or pets. Referring to pets, that includes our hermit crabs. They can be enormously entertaining and run like the wind! The only relief I have is to seek out beauty. It is the source of that which is mightier than this merciless pain. If you look hard enough, you will find it. If you close your eyes and concentrate, you can stop time.
I can’t tell you how much the response meant to me after I posted Til it Happens to you. The support was incredible! I was too overcome to respond for a while. People have asked how I got through it all. I suffered status epilepticus at 13, meaning I had continual seizures which couldn’t be controlled. I stopped breathing and was in a coma. It took a long time to recover from this event (it was predicted I wouldn’t). The next year, I met a monster, and was abused. The finale was being thrown off a building at fifteen. My healing has taken over twenty years. There are some things that have helped.
1. I can’t handle violence of any kind. I can’t discuss literature, nor movies, let alone view them, if they are violent. At first, I didn’t want people to think I was fragile. I didn’t want them to see the distress that talking about violence (parcelled as entertainment to the masses), conjured. I would pretend that it wasn’t hurting me. Nowadays, I don’t pretend. I gracefully bow out of conversations and invitations which would bring me into this sphere.
2. I couldn’t leave the house by myself, even to go to the letterbox. It has taken many years and many small trips to gather the strength to go farther afield. I plan ahead, and the apps I have on my phone make my preparations easier. If you are agoraphobic, be kind to yourself. Every little step is a triumph. My major incentive was that I had to get to the IVF clinic early in the morning, and simply had to do it. It made me braver than I actually felt! Now I take my daughter everywhere, and the freedom is liberating!
3. I have had to confront my deepest fears. The ones I was frightened of encountering, as I would surely fall apart. My fears included rejection, loneliness, being left alone and finding out that people weren’t as they appeared. Confronting these fears has been terrifying, and it has hurt. I have uncovered that people I looked up to were abusive behind closed doors. I have been let down and let go, but I have survived. I learnt not to leave myself behind in the process. Comforting myself became of premium importance.
4. People see a smiling, functional adult when you are out and about. They don’t recollect the child kept alive in Intensive Care on a respirator. They came into my life during a different chapter. I know what it took to get to here. The hundreds of hours of physiotherapy, the scores of surgeries… I have to remind myself of my achievements and give myself a quiet pat on the back.
5. Boundaries are a big one for a survivor. I felt as vulnerable as a newborn when I started to make a life for myself. I believed anything anyone said, and believed everyone was a friend. It has taken trial and many errors to come up with boundaries, and to trust my judgement above all else. It was a revelation, to give myself the space to honour my instincts. If a person or situation doesn’t sit right, and makes me uncomfortable, I walk away. It is imperative to do so, as I have a little girl watching me. I need to display good boundaries so she knows that its okay to be in touch with her own. It has sometimes taken me being struck mute in the company of somebody who is toxic, for me to comprehend that my body is trying to protect me by producing physical symptoms. I am free, and thus I get to decide who stays in my life. It may not be anything that anyone is doing. Rather, they remind me of someone from the past. I still have to honour my discomfort.
6. Things will trigger me on a daily basis, and much of it is out of my control. It could be a song coming on in the supermarket, an aftershave I detect in passing. It might be a conversation, or visiting a friend in a hospital where I had prior surgery. Deep breaths are required, and sometimes a visit to the lady’s restroom to compose myself. I tell myself that my anxiety is a natural reaction, and I am doing fine. If I am with close friends, I will tell them that a memory has come up. If I am not, I will breath deeply, find a focal spot to concentrate on, and reassure myself quietly.
7. I will not drink to excess, nor take tablets to blot out a bad day. Sometimes, the memories hit hard, and along with the massive amount of pain I suffer, it becomes overwhelming. Alcohol is a depressant, and thus, is disastrous as an antidote. I will only have alcohol when in the company of friends at dinner, or as a toast of celebration. It only compounds the depression which inevitably comes after overworked adrenals have crashed. Instead, I go for a walk, swim or am otherwise active. It helps tremendously.
8. I will space out at times. When you hardly sleep, and are in pain, it happens naturally. When you put flashbacks or a panic attack into the mix, let’s say I am sometimes away with the fairies! Writing (and preparing for a writing task), also lends itself to spacing out. If you holler at me on the street and I don’t respond, that’s why! I am escaping into my inner world, which is expansive and magical. I nearly jump out of my skin when I am walking along and a car beeps me. I remain jittery for the rest of the day. I am hyper vigilant; always scanning a crowd for danger, even when in my own world. It’s quite a combination!
9. You are allowed to say “no” to a request. You are allowed to rest. I keep going until I can’t, and at that point, I retreat for a bit. I have to. It is a revelation, when you learn that you can keep free spaces in the calendar. Even thirty minutes to sip tea and daydream is heavenly. I need time alone to restore and reboot. Time is precious, and I try to use it wisely.
10. My survival has been an odyssey of epic proportions. I tried to run from the memories. I attempted to smother them, as one instinctively does a fire. The smoke streams from underneath the cloth, and then the flames explode forth in a cacophony of rage. It is like burning off disease, only to have damaging adhesions form underneath. Running doesn’t work, and it certainly doesn’t help. Over many years, I have visited my places of trauma. I have wept and I have released at each site. I only did so when I was ready. You have to be ready. My natural instinct is still to run when triggered, but now I have tools. They come in the form of a laptop, a paintbrush, a pastel. They come to me as bird song, my walking shoes, my friends and my music.
When I was a child, I had big dreams. I had a determined spirit and an acute awareness that what was being done to me was not only wrong, but evil. I felt as though a cannon had ripped through my psyche, smattering me into pieces. Over time, I have laid out all the pieces, and put them into place. I am glued, sewn, fused and grafted together. I was once a china doll. Now I am reinforced and can never be broken again. It takes time to heal. You will want to give up. You will consider yourself beyond repair. You will want to run and you will try to escape your own mind. You will want to give up. Please don’t. The joy of finally accessing the tools to help you cope are worth the fight.
I love surprises of the pleasant kind! A dear friend texted me to ask if I wanted to go see Simply Red at the State Theatre. She had free tickets given to her by her DJ sister. Her sister lives in London, and had arranged it from there! Now my friend had a very bad car accident a few years ago, and had many injuries, including a broken back. She is in constant pain. My reaction to this lovely offer was the same as hers had been. We both thought of the practicalities of getting in there, and whether we would be able to stay awake until the set finished at 11pm. We worried about our pain levels escalating, and how we would feel the next day. We checked in with each other the day of the concert, and we resolved to go. To hell with the consequences! Now came a comedy of errors. We found parking under a popular city landmark, and I alighted the car with my trusty walking stick. My friend went to retrieve hers, only to find that the only aid she had was a hefty three-legger with a folding seat!
We went to the lift, only to find that we couldn’t go through the shopping centre. We saw security manning the business foyer, and we both burst into peals of laughter upon discovering that the escalators weren’t working and were cordoned off. We had no choice but to walk up the steep stairs alongside. We asked how on earth we could get out, and the security guy said that he would push a button to make the lift go up. Outside, we were completely discombobulated. We are city gals, and know our way around, but our pain-addled, weary minds couldn’t get it together. We punched ‘State Theatre’ into our smart phones. Well, the bloody things took us in the wrong direction, a fact that only dawned on us after a block or so! We put the phones away and relied on our wits. After a stiff drink, we arrived!
By the time we got to the theatre, we were late, and Simply Red were on. We were guided to the VIP area, which happened to be in the lowest section of the grand old theatre (which didn’t have a lift). We laughed some more as we negotiated our way down many steep stairs. I am sure Mick Hucknall looked straight at us as we hobbled along to our seats. Our tricky bladders were up to their usual mischief and we had to find a loo at differing times. I had forgotten just how pure and emotive Mick Hucknall’s voice was, and man, the band were in fine form. We moved in our seats, performing our unique interpretation of dance. We squeezed each others hands, thrilled that we had gotten here and were doing this. It was a celebration of having survived, for her and I. It was an act of defiance of the pain we will have forever. We were sneering in the face of exhaustion and depression. We were simply two women out on the town, listening to the sublime Simply Red.
I noted my friend’s jaw tightening toward the end, and I asked if she was ready to go. She nodded, knowing that I knew all-too-well, and she didn’t need to conceal her discomfort. We quietly left, walking through Pitt St Mall and to the carpark. We once again had to walk up to security, in order to operate the lift. We then had to negotiate our way around the cords and machines that the cleaners were using. We chatted all the way home, mostly about who we had been before our spines were broken, and then about our wonderful kids. We talked of the joy of sleeping for four hours straight, and what a rarity it was. It was a gift of grace, being in the company of a soul sister, one for whom no words are necessary. We laughed at the same time upon seeing more stairs and barriers. We knew when each other had reached our threshold. We grumbled about uneven paths and sticky-out objects blocking our way. Mick Hucknall, if you happened to look in our direction as we were leaving early, I can assure you that we had an extraordinary time in your company. Your music was the perfect accompaniment to a night of revelry for two ladies with damaged spines. We left on a sweet note, to your dulcet voice caressing our ears.
I am amazed and delighted that my last post, Who Am I, resonated with so many of you! I try my best to negotiate each day as a free spirit, unencumbered by my body, whilst at the same time, factoring in the need for rests and a regime. I am sure that those of you with physical challenges can relate to the following scenarios. Our local movie house has a ramp, from the ground level to the 2nd level. One has to stop at the first floor to get tickets and snacks. There is a lift, but it operates with a key which is often hidden under detritus in the office. Trying to negotiate the long walk with tickets, drink, popcorn and a walking stick is arduous. I don’t want to hold up my friends by waiting until the lift is available. I don’t want special treatment, or to draw attention to myself.
The second scenario is when you have your day planned. It may be a day in the city. I have a regime drawn up, stating what time I will be at particular places and when I expect to leave. My body holds me to the promise of pain relief and rest at particular times. If I am held up, there is hell to pay. It is a different way of being; engaging with the world, whilst having limitations. A fine juggling act.
I panic if I am home later than I anticipated. I know there will be hell to pay. It may be no sleep that night, or vomiting because I had to take extra pain relief and the side effect is nausea. The danger with the pain relief is that I am agreeable to most things, and the pain is discounted. I am floating! I sure come down to earth with a thud when it wears off!
I still hold to the theory that I am not my pain, nor my body. Do you suddenly become a car because you are driving one? It is just that my vehicle is a little rusty, and has to be treated tenderly. Perhaps I will wait for the lift at the movies, to make life easier on myself.
A few years ago, I called in on a mental health nurse that I knew. I had long admired his work, and his holistic approach to his clients. He even had a gymnasium installed in the rooms, and kept a watchful eye on people’s diets. “Right, that does it. I am not able to cope without medication. My depression is getting worse, despite my best efforts!” I proclaimed. “Can you please prescribe me something?” He did something unexpected in turn. He laughed. “Are you kidding me?! You have had X, Y and Z happen in the past few months, and these events have pummelled you. I would be concerned if you were behaving as though everything was as it should be. You don’t need medicating; it wont help you. You have reactive depression, caused by the events unfolding about you. The feelings you are experiencing are normal and a sign that things need to change. Your depression is normal, as are you. You are coping tremendously well.” It was on this day that I discovered the difference between reactive depression and endogenous depression (no obvious cause). I have had both alternately throughout my life, and there is a marked difference between what responds to medication and what doesn’t (when someone points it out to you)!
I was hoping a pill would make the discomfort disappear. Instead, I was urged to sit with it, journal it, and hear what it had to say. It has been dark, windy and rainy the past week; a perfect time for reflection. Here is a screen shot I took of my constantly humming phone this morning.
40 text messages and 1,056 emails. Sometimes, there are many more of both, not to mention Facebook messages. Last year, I endeavoured to answer them all. My schedule was to get up at dawn, answer messages, and write content, for myself and others. By 8am I would organize my daughter for the day and ferry her to workshops. If we were at home, I would work with my daughter for six hours, then get her to classes in the afternoon. In the meantime, there would be more work for me. On top of this, there were social activities. There was the forever buzzing phone too. At Christmas, I stopped going onto Facebook. I found I just couldn’t cope. I felt like Mickey in Fantasia, when he conjures up the buckets, only to have them flood the room. That is very much how I have felt with all the messages. During December, I heard the most horrific stories of abuse and of deep sadness. I carried it on my shoulders, and the weight slipped down and smashed the already broken column of my spine. There was little lightness, and much darkness. My child needed me, and so I had to stop. I am forever grateful to this little girl for what she teaches me. My energy has been replenished by our walks and games. You can be in the same room to those who mean the world to you, and yet still be a world apart when distracted.
As with a few years ago, I don’t need medication for this particular brand of disquiet. I just need to organize a more manageable way of being. To put my contact list into categories, and un-subscribe from everything that chews up precious time. There have been days when I haven’t had time to eat, nor do what is necessary to maintain my health. Trying to be everything for everyone and feeling like I am failing. Putting myself last on the list of priorities. I have had time this week to put together a plan of action for this spine. I am going to undertake the discogram and chemonucleosis that was offered me years ago. I had it once before, and it provided relief for quite some time. If successful, it will do the same and bide me time. This decision feels right, and so now I start saving for it!
I know many of you can identify with the overwhelm. If I hear my phone ringing, I have an anxiety attack. I am slowly making my way out of my cocoon, but never want to go back to the unsustainable, 24/7 demands I made of myself. How terrifying and liberating it is, to finally have time. Returning to the world whole, rather than chipped and hollow, is what I desire.
Little miss and I were invited to spend the long weekend camping with friends. As a child, I joined the GFS (Girls Friendly Society). I didn’t last long. Those chicks participated in sedentary activities, mostly indoors. I quit, and enlisted in CEBS (Church of England Boys Society). There was concern about having a girl along at the camp’s, but they couldn’t find an actual rule that forbade my becoming involved. The boys were mostly wounded soldiers, involved in familial wars via conscription. One young boy came from such a fractious family that they were featured on 60 Minutes. We were comrades. From nine years of age through to adolescence, I would join the boys on camps. We camped in the Australian outback, didn’t wash for a week and dug our own toilets. I would pitch my little tent besides the boy’s large canopy shelter, and raid the supply tent in the middle of the night. After my back was snapped, I never went on another camp.
I tossed up my friend’s invitation, and was indecisive for a while. I was concerned about my spine. Would I be so crippled with pain that I wouldn’t be able to move? There wouldn’t be reception where we were headed. There are other health issues going on, that need attending to in the next few weeks. I felt anxiety about being away from my comforts, and wondered how I would cope. I was surprised that the idea of going bush conjured up so much fear, where it once provided such joy. The deciding factor’s were the people I was going to join, and the enthusiasm of my little girl. My friends would look out for us, and my daughter was excited about sleeping in a tent, her first experience! A part of my life which had been comatose since my fall, was awakened, and I felt freedom and wildness and trust that I hadn’t felt in such a long time.
The generator was turned off, and we retreated to our tents. My little girl and I cuddled down and relayed stories, then she fell asleep. I read for a bit then drifted off. We woke with a start by the feel of possums pressing on us through the roof of the tent. A whole family of them were twittering. “What is that mummy?!” little miss asked. “Just possums,” I hoped. I had never seen Wolf Creek, and was very glad that I am not into horror movies. When you are laying in a camping ground in the pitch black, your imagination is active enough. We both needed the loo, and unable to stand it any longer, we crept out to the port-a-loo. “Look up!” my companion gasped, and I had my breath pulled from my lungs. The stars were incredible, as though the angels had poked delicate fingers through the navy crepe paper of the sky and allowed us a tease of heaven’s sparkle. We stood there for several minutes, looking up. Finding our way back via a fading torch proved fun, and we both giggled. I am so glad that we ticked a goal off our bucket list. I am so glad that the fear of pain; of being in agony far away from home was quashed. If you have never heard the cacophony of birds waking at the break of dawn in the Australian Bush, you need to. It was the purest and sweetest sound I can recall. I came home tired, grubby, in pain but replenished. I learnt never to limit myself, nor talk myself out of doing something that is unfamiliar or out of my comfort zone. That is often where the best experiences lay in wait.
When I broke my spine again, I had a small child to look after. I should have been on bed rest, followed by bracing and possibly in a plaster jacket as well. When driving, I would psyche myself to go through a roundabout, as the pain would make me scream when I turned the wheel. Once a week my daughter would go to occasional care, and I would crawl back into bed. ABC kids was a godsend in the months that followed. I had to take heavy-duty painkillers, and relied on buses to ferry us about as driving was out for the most part. My daughter and I danced in a coordinated manner, and she would help me in so many ways. It made our bond stronger, and she reflected the enormous pride she felt in assisting me. I could either sink or swim, and my child kept me buoyant. Pneumonia followed, as I couldn’t breathe from the base of my lungs. Home Care sent a dear soul to clean up my house once a week. I looked out the front window, and saw an elderly lady struggling up the three steps to the front door. She would groan, trying to vacuum and wince when she mopped. We ended up having cups of tea on her visits, she regaling me with stories of days gone by. I couldn’t put her to work! Body cast at 17 years.
My local neurosurgeon says that he cant operate for pain relief, as it simply wouldn’t help. When structurally I am unable to walk, or breathe, then we will go in. He encouraged me on my last visit, telling me I am doing a good job. I have to keep moving, and exercise every day. Whether it be a walk, swim or visit to the gym, it helps. I feel connected to a body I spend quite a bit of time attempting to escape. I do weights, and work out on the cross trainer, as it doesn’t provoke agony afterward. A scientist friend put me onto Zen Spray by Martin and Pleasance after I broke my back again. I find it helpful, and it can be used on fracture sites. I have a lumbar brace, which holds me together and provides some comfort. I use a walking stick, as without it, I fall over, particularly when tired. I have learnt not to compare my days with others. Anything accomplished, whether it be sitting at my desk, or pegging up washing, is a triumph. I take medication to help with the pain at night so I can catch a few hours sleep, and if I have a busy day coming up, I have to plan for it. That means resting before and after, just laying flat, and pain killers. I have a TENS machine, which I use frequently, and wintergreen oil helps soothe the arthritis.
I will be trialling new hormones to compensate the bone loss in the next few months, and seeing my neurosurgeon at St Vincent’s. I feel blessed. When I suffered the breaks through the thoracic region, my right arm couldn’t be lifted high, and I suffered constant tingling. It is somewhat better, enough that I can write and grip things. Positive self-talk is a must for the mornings I crawl to the bathroom. “You can do this!” I insist. When I am out and the pain ramps up, I work out how much longer I have to be upright before I can rest. Funnily, it helps. “Almost there!”
One wrong move, or carrying too much weight, and I can feel (and hear), the scaffolding go. I have come home from grocery shopping in agony, which nothing tempers. Relaxation music and meditative cds are a blessing as I try to escape the pain at night. Bowen therapy has also been a help when the pain isn’t acute. It is worth trying to maintain your mobility and limit the daily pain. I know what it is like to feel helpless, to have pain drag you down. I know what it is like to feel isolated, removed from the wonderful things going on outside you. Be kind to yourself, surrender when you need to, and do something that shall help you feel good. It is a mental battle, living with pain. Be your best advocate.
Since my back was broken in the fall at fifteen years of age, I have had almost twenty years of intense pain. Operations, grafts, casts, hardware, braces, physio…I have endured pain that I never would have imagined. I lead a ridiculously full life in spite of it all. At fifteen, I had a hip graft and Harstshill rectangle wired in. The next year, the hardware was taken out as it had slipped out of place. At seventeen, I had operations to save my life, as my spine had collapsed, crushing my stomach, heart and lungs. At twenty, I had surgery to remove the rods screwed alongside my spine. Nobody knew how I would cope or be able to hold myself up without them.Harrington Rods. I had further surgeries to shrink the three remaining discs after they bulged out. I went through pregnancy with metal filings and chunks of bone lodged in my spinal canal (too risky to remove), and a spine made out of old hip and rib grafts, fused from the thoracic region down. I would have endured hell itself to have this child. I went to the physio department of my local hospital regularly, and did hydrotherapy daily. Some days, the pain was disabling, and I was in a wheelchair toward the end of my pregnancy. I developed gestational diabetes and had to inject insulin, and when I went into labour, my sugar levels were uncontrolled. The obstetrician couldn’t risk a general anaesthetic, and we had to chance administering a spinal anaesthetic. I was warned that there was a risk I could be permanently paralysed, and they only had one opportunity to get it in place. I breathed deeply and didn’t move an inch, and it worked!
Throughout the next year, my spine was weaker, and as my oestrogen levels dropped-the result of medication I was taking for endometriosis- my bones weakened. I slipped over when my daughter was two, and heard a frightful snap in my back. The pain was so intense, I could hardly breathe. With no-one else around, I had to pick myself up, and take the stroller back to my car. I drove home, knowing that I had broken my spine. I certainly had, from T10-T12. For those who have injured their backs, the following will make sense to you. In my MRI report, it stated, “At C5/6 there is arthrosis bilaterally, contributing to foraminal narrowing on the right (foramina are channels where nerve roots exit the spinal cord). At C6/7 posterior broad based disc osteophyte (bone spur), protrusion is seen. In the thoracic spine, there is anterior wedging of T7 vertebral body with approximately 30% loss of height anteriorly. Subchondral bruise related to the left T6 costovertebral junction, being degenerate in nature. In the lumbar spine, posterior step deformity of L2 relative to L1 remains. Disc dessication (dried up discs), are present at L5/S1. At L4/5, there is a degree of facet arthropathy of the large ligament in back. L3/4 there is again arthropathy associated with scar tissue related to previous laminectomy, involving much of the upper lumbar spine. At L2/3 the facet arthropathy indents the posterior aspect of thecal sac (the membrane surrounding the spinal cord).”
The report above was tabled almost five years ago. Things have gotten worse. Being in early menopause has made the pain more intense and my bones more fragile. An attempted murder half a lifetime ago, and I deal with the aftermath daily. I can handle the pain, but what hurts is not being able to go horse riding with my daughter, nor skating, nor cycling. If I fell over, the damage would be catastrophic. How do I cope, and what have I learnt? I will tell you in my next blog piece.
March is Endometriosis Awareness month. Endometriosis and infertility were the worst experiences of my life. This from a lady who was thrown off a building as a teen! I started to experience pelvic pain at eleven years of age, and often ended up in hospital. I would vomit and scream from the agony. Pethidine rarely touched the sides in casualty. I saw gynecologist’s who said the pain would settle, and I had ultrasounds, which showed nothing. I was on the pill by fourteen, which did nothing to settle the pain. I wasn’t diagnosed until my mid-twenties. I saw a new spinal surgeon and mentioned that my lower back and sciatic pain ramped up the week a period. He asked my GP to refer me to a gynecologist with the belief I had endometriosis. Indeed I did. It was the size of oranges, clumped together outside my bowel, bladder, and pressing against my sciatic nerve. The first surgeon burnt it off, which caused blood-filled cysts. Within six months, I was in such agony I had to see an endo specialist for further surgery.
I was told I was infertile, and I declared I wanted to try IVF immediately, whilst I had a clean pelvis. The IVF clinic knew little about endometriosis, and the drugs I was on made it flare up, rather like pouring petrol onto a fire. I ended up in a maternity ward for a week on morphine. I had two more cycles with this particular clinic, before changing. The new place honoured my gut instincts as to what drugs I should be on and those I couldn’t tolerate. I fell pregnant! I felt the best I had since I was eleven, even with the extra pressure on my fused spine. Within months of my little girl being born, the endometriosis came back. It was everywhere. I had my daughter’s cord blood stored when she was born, in the hope that she will be spared this cruel disease. They are discovering genetic links and also that it is an auto-immune disorder.
I had more surgery, then went onto drugs to trick my body into thinking it was in menopause. With already weakened bones, I slipped over and broke my back in three places. I had to give up the medication. I spent thousands on alternative therapies. I exercised each day,and had a vegetarian diet but despite all my efforts, it raged. I wanted to give my daughter a sibling, and to feel as well as I had when pregnant with her. In 2010, I went in for more surgery. The doctor severed the main nerve to my pelvis, hoping it would provide pain relief. Once again, it was everywhere. I woke in my room, felt dizzy and fell to the floor. I looked at my stomach and it was beet-red. My blood pressure had dropped rapidly by the time the nurse ran in. I was haemorrhaging. I was pumped full of blood and doctors stayed with me overnight as I wasn’t stable enough to go back to surgery. The next morning, they operated and they found the bleed. It was a slow recovery, and a traumatic one.
When I saw the surgeon, he retrieved a photo he had taken of my fallopian tube, wondrously ovulating. A little egg was present, perfect and waiting to begin its journey. I cried. You see, straight after surgery, I went into premature menopause. I couldn’t have another child. My bones are fragile, and I face twenty years of not being exposed to natural protective hormones. If I take HRT, it could well feed even a pinprick of endometriosis in my pelvis. Endometriosis has made me really unwell at times and brought me to my knees. I am determined that my daughter’s generation shall have better treatment options, be diagnosed promptly, and have better outcomes. Let yellow rule the month of March!
My friend Diana Reynolds is an artist, and she gifted my daughter and I this enchanted painting. It has pride of place in our home school room, where we get to admire it daily. To check out more of Diana’s work, click here.
RAPHAELA ANGELOU 