image from ProHealth.com
I am going to write my awakening story in two parts. In the first part I’d like to talk about where I was at that time of my life, how low I had fallen and why. Then in the second part I will tell you about what changed all that, how I awoke. I don’t feel like I want to muddy the awakening with so much back-story but it’s of greatest importance to know the fall before the rise!
My awakening was both a figurative and literal occurrence that happened about five years ago. I was at my lowest ebb. I was trying to deal with so much going on in my life while coming to terms with the loss of my good health.
My teenage daughter had been diagnosed with fibromyalgia, she had been experiencing “growing pains” occasionally throughout the years but these pains were different and coming often along with other associated symptoms, I could immediately see the similarities to my own health problems. It was something I had worried about when she was born, she arrived with very loose hip joints where I had arrived with completely dislocated hip joints but she hadn’t experienced any early problems walking or pain and so it was something I forgot about. She had the usual host of tests, including lymes disease because we had both been bitten by tics a couple of years earlier. Fibromyalgia is diagnosed by process of elimination. When she was given this diagnosis the bottom fell out of my world. Here I was in my 30’s living like an old lady in a care home and I had perhaps sealed my daughter to the same fate? This happened at a time she was just leaving the teenage miss bitch behind, boy was she a handful at times but we were all growing closer again. My husband and I were trying to support her in an upbeat manner, attempting to sell her on the it’s great to know while you are so young, you can be more prepared than I was, live healthily, make changes now so you will stay healthy. The thing is this illness does not always work this way, it affects the young and the old, the healthy and the unhealthy. It is one of the reasons it is so hard to deal with and still such a mystery. What helps one person will not help another. She became increasingly anxious and began to have panic attacks, not wanting to leave the house, not going in to school and pushing friends away in favour of solitude in her bedroom. She lost all confidence, became depressed and lost. I’m happy to tell you that she’s back in control now.. She is amazing! Her school offered to let her stay on an extra year, usually fees are required but they waived them. She never failed any of her exams but a few were lower grades than she had hoped meaning they did not total up enough points to get her into university. She had tried her best but the anxiety and cognitive problems that comes with fibro worked against her on exams days. Anyway, she worked her butt off that year and secured a place in her first choice university. So last year she began year Zero of a fine art degree course.. four more years to go. She works part time in a local supermarket at weekends to help support herself. She has fallen in love with a nice guy who treats her so well. She’s working hard for uni but is also enjoying having some social life again. And healthwise? Well she deals with the fibro pains when they come, painkillers and heat pads and when it’s really bad some tears. She deals extremely well with her anxiety issues, rarely having panic attacks now.
My son was in his first year of secondary school, around twelve/thirteen and was having a really hard time. He was diagnosed with Tourette syndrome at around age nine, followed by Aspergers, Obsessive Compulsive Disorder and more. He was encouraged to write a speech and stand up at an assembly meeting and talk about Tourettes and how it affects him. In some ways it was very freeing for him, people understood why he would act weird sometimes and just accepted it thereafter. Letting his teachers in on his secret made class time less anxious for him! The downside was the negative attention, the pointing, the whispering and the laughing. Being branded tic-boy and losing some he had considered friends all the while trying to cope with and get his head around worsening and numerous newly developed tics. Hating not being “normal” at a time that peer group acceptance is so important. Although he had support from the school and the child & adolescent mental health Services things kept slipping downhill for him. Frequent accidents and dislocations led to being told he had hypermobility syndrome, getting him to do the physiotherapy was a nightmare and in the end he had to stop taking part in school gym class, further alienating him. He began to refuse to go to school, often faking sickies, we tried banning all entertainment other than books all day and night if he stayed off that day. We tried offering rewards, we tried it all but our teenage bundle of hormones, frustration and anger just didn’t care. He became anxious and had a very low mood. he was investigated at the sleep clinic for night terrors which turned out to be night panic attacks, he had never needed much sleep to get by, four to five hours a night, but now he limped by on one to two. He began to play video games a lot more than we liked. He said they gave him a break from the tics in his head, when we asked him what he meant he told us that for years every word he heard and every word he saw he would mentally type out on an imagined keyboard, he didn’t have to do that when he gamed. It became a struggle to ever get him off his games. Things were terrible; there was no communicating with him, only yelling matches. It felt so selfish and hurtful; days when he was most frustrated he would be looking for a fight, breaking his frustrations on us. I began to feel very trapped, that I was once again stuck in an abusive relationship and it was with my son, someone I could not love more if I tried! He seemed blind to my poor health and everything else going on, but I was wrong! Working with his CAMHS psychiatrist finally began to pay off a year or so later when he began to talk about what had really been going on. My poor boy has been trapped in his own hell but that’s for another day, what I want you to know is that he is doing so much better. He can still be challenging! He still does not go into school every day but the school works within his limitations and he always has work he can do at home through the pc. With a 50% attendance rate last year he still passed all his exams with flying colours; he is studying and his attendance is up so I have great hopes for him this year! He still struggles with games addiction, which is a clinical diagnosis, the worse his mood the more time he spends on them. However he has partly turned it to his advantage by focusing his education towards a computer/gaming career. He talks with us about any problems now and is happy spending time in our company again, yes he is on the other side of the teenage mess now and I can only hope things keep going well for him.
I had been at home and out of work for over two years at this point. I have worked many jobs over the years.. figurine painter, waitress, retail, barmaid, childminder and then nursery assistant. You see I felt like a slave in my childhood home, feeding, changing and generally looking after my 5 step-siblings whom I loved dearly. I resented doing it but I was also good at it. I had a natural nurture instinct. It never went away but it took me half my life to realise I had a gift when it came to childcare. That to do it now was my choice not my task and it was a revelation! I adored my job! I still miss it so much! I had begun studying to be a fully qualified nursery nurse, the course was provided at no cost through my job. You had to have 12 hours working in a nursery environment to qualify for the course. I worked 26 hours a week but when myself and my colleagues contract came up for renewal they had slashed my hours down to 7, knowing we would have to agree to make up the hours voluntarily to stay on the course. I was furious but not having joined the union there was nothing I could do. I was struggling with the course which was strange for me as that was something I’d always found easy. I was having to re-read and re-re-read pages over and over again before taking in any of the information. I was forgetting the names of co-workers and children in my care. I was always so so tired. My son would come around and meet me when the school closed and we would walk home together, once in the house the frustration game would start! The angry feelings in him that had built up during the day while he suppressed his behaviours had to come out and so he would throw a tantrum after almost every school day as soon as we got home. It was like a magic door that changed my child into an animal! All I wanted to do was have a lie down and cry! I was also noticing my pain levels, the same pains I’d had in childhood were returning and as much as I tried to ignore and pretend this wasn’t happening it was. You expect aches and pains when you work in a nursery, all the chairs and tables are at the height best for three to five year olds. Leaning over these or sitting at them was awkward, playing in the wendy house, on the climbing frame, on your knees, up and down, up and down, slipping on spilled water ( or worse!), the kick back began to build up a little stronger bit by bit. So when the new contract landed I had a choice to make, do I let them do this to me? I decided it was also time to go to the doctors and that was the start of my fibro journey. The tests began. I talked with my husband, how I felt I wasn’t being the best mother I could be as I was so tired and sore. Could we cope on one wage? Maybe not but he still supported my decision to quit. I don’t regret quitting, my health was declining and it was taking more and more from me to soldier on and it was the best decision for my son especially as things were about to go haywire from him too but that doesn’t mean I don’t miss it!
Give me full health and I’d go back to working in early education in a heartbeat, paid or not! Two years out of work and my husband was working three jobs, while playing mother and nurse, and those ends refused to meet. Instead of luxuries like birthday presents going on the credit card the grocery shopping and petrol started creeping into those statements! I was not entitled to incapacity benefit as my national insurance contributions had fallen short for the requirement. I was not eligible for income support as my husband was working and I could not claim job seekers allowance because I was not well enough to work. We had already been in debt and were bailed out by my granddad and his wife, not only were we struggling to be able to pay them anything back but we were heading into a situation that we might have to beg for help again! His mother was helping us out almost weekly with shopping money. This had been eating away at my husband. He couldn’t work any harder and his own health was slipping. He had to give up the small job first and a few months later the other small job. We’d had a scary time years previously when he was so exhausted no matter how much he’d slept. He would take bouts of being ill for a week, not cold/flu ill, no appetite, sore head, slurring words, weakness, dizziness and nausea. He had tests at a sleep clinic and we found out he had sleep apnoea. He was tested for MS, brain scans showed dead spots in his brain. It turned out his severely high blood pressure was causing something like mini strokes.. rare and actually had been studied in Europe where the yearly brain scans of pilots had revealed that those with high untreated blood pressure would experience small spots in the brain dying off suddenly. His blood pressure resisted treatment and some of the side effects of the pills were horrid. It was all finally under control, steady blood pressure and using a cpap machine nightly worked wonders but he was over stretching himself and I was terrified that he would get really ill, perhaps a large stroke would steal him away from us. I had made the wrong choice, I should have been out there helping, bringing in a wage and at home I should have been cooking, cleaning and sharing the hard work but I couldn’t. I was a failure at being a mother and now at being a wife and then my health got worse again. The children were looking after me when my husband worked. The youngest would do his best when my daughter went out to work. She needed an income of her own to buy the things we couldn’t get her and she wanted to pay some of it as “board” to help out! Over the course of a few months I became completely housebound, my legs refusing to obey me and the pain soaring. I kept falling, my leg would just collapse under me and I’d hit the floor hard. The children would do their best to help me up but in the end they would have to phone their dad at work and he’d have to come home to help. He worked a good half hours drive away so it took a chunk of his working day. After a particularly bad fall it was sit down and talk time again. We looked into all our options and agreed to apply for a benefit called disability living allowance. If eligible at middle or high rate then my husband could claim a carers allowance. In the meantime he gave up his work to care for me, claiming income support and on the understanding they would re-hire him the moment things got better. He was good at his job, he didn’t love it, he always had a family first attitude but he was happy there and he was in line for a great promotion. I was a drain on my family, I was ruining their lives!
My husband was now my nursemaid more than a life partner. We couldn’t be intimate, it hurt too much. I needed help with everything and I mean everything! Being mid thirties and having to ask your partner to wipe your backside when you are not paralyzed, have no limbs missing and don’t even have a clear diagnosis or understanding of the illness. I felt disgusting, more and more as weight piled on from my comfort eating. I was already large because of comfort and secret binge eating, food has always been my crutch and I leaned heavily on it during all our problems. I could not have felt more useless and I spent most days in bed. when my pain got bad at night and I would ask my husband for help to get downstairs and then tell him to go back to bed and I’d call if I needed anything I would sit and cry my heart out. I’d heard my mother tell me often enough that I should never have been born, that I was nothing and would amount to nothing. I could see it was all true. I was inching my way closer to death with each day. I even checked to see if suicide was covered in my life insurance policy. I could only see my family better off without me. Suicide wasn’t a new idea to me, I tried twice before as the only way I could see out of my trap and I had come very close to succeeding. I was sure I could do it properly this time, I was certain I would lose my husband, how could he bear to stay with me. I should free him to find the person he deserves. We had been through a rough patch in our marriage, the drama and divorce of a very close couple, the strains of life and an early miscarriage knocked us off track but we had come through it stronger. I didn’t see a way through now. I saw my children coming to hate me and a husband who would not want me soon enough and I could not face that so that was the state of my mind. I had reached my lowest of lows. Wallowing in self-pity and grief I had given up on life because I couldn’t see past the shadows.
Please remember this is what was.. not what is. I have had a long day so I will return tomorrow to add part 2 and to answer my comments.
The awakening experience challenge by Barbara Franken
1st Barbara – http://memymagnificentself.wordpress.com
2nd Paddy – http://paddypicasso.wordpress.com
3rd Emanuel- http://emantable.com/musings-of-a-table/
6th Julianne – http://juliannevictoria.com
7th Sarah – http://theskycladwriter.wordpress.com
8th Shree – http://heartsongsblog.wordpress.com
9th Dace – http://mywaytotruth.wordpress.com
10th Korinn – http://www.korinn.com
11th Sindy – http://bluebutterfliesandme.wordpress.com
12th Stefanie – http://dancingwithstefanie.com
13th Mick – http://meticulousmick.wordpress.com
15th Megan – http://mychroniclifejourney.wordpress.com
16th Pat – http://patinspire.org
17th Marga – http://lifeasimprov.com
18th Kimberley – http://kimberlyharding.wordpress.com
21st Heather – http://wildflowerwomen.wordpress.com
23rd Sue – http://suedreamwalker.wordpress.com
24th M… – http://seeingm.wordpress.com
25th Brian G – http://middlepane.com
26th Dotta – http://dottaraphels.wordpress.com
27th CW – http://sunflowerrosecw.wordpress.com
28th Laurie – http://lauriesnotes.wordpress.com
29th Debra – http://ptero9.com
30th Linda – http://lindalitebeing.wordpress.com
31st Michael – http://navigator1965.wordpress.com
1st Leigh – http://bluegrassnotes.wordpress.com
2nd Shaman – http://shamanictracking.com
3rd Joss – http://ccwow.wordpress.com
4th Jenna – http://jennadee222.wordpress.com
5th Shelley – https://livingwithshadows.wordpress.com
6th Elisabeth – http://almostspring.com
7th Michael – http://embracingforever.com
8th Lehua – http://amusingspirit.wordpress.com
9th Aleya – http://alohaleya.wordpress.com