I’m beginning to finally learn about myself. Accept why I feel compelled to write insomnia fuelled blogs at 2.58am! Sitting on this sofa, beside the amazing purr of my gorgeous Max, it’s a therapeutic spot. It really does feel like a cathartic experience and I know that this writing is serving its purpose.
I’ve said in an earlier blog that I won’t talk about my daughter’s CFS. I won’t. However, it does serve to validate why I’m doing this blog. During the throes of the difficult time 10 years ago, I know I had the same urge to voice my feelings. These feelings led me to being interviewed on Spotlight News, Sunday Express and various local Newspapers. At the time, this drove a huge wedge between my husband and I. I felt so powerless, my daughter was unable to enjoy being a carefree 12 year old, due to the crippling effects of CFS. To keep strong for Hats, I found my voice. I let down my usual guard of hiding my feelings and I let myself be heard. For an extremely private man, Clive found this incredibly hard. He didn’t want the public to know about our family’s current struggle. When I was contacted by Jackie Fletcher, (the founder of JABS), and asked to give my story to the public, I grabbed the opportunity with both hands. If I respected my husband’s wishes, this would not have happened, but it would have left me frustrated and defeated. I was so angry that a vaccination had caused so much damage to a young 12 year old girl. At the time, the other girls’ parents were not happy to talk to the press. I wasn’t going to allow myself the silence. It kept me strong when my daughter needed me to be strong. Fortunately, and we thank our lucky stars everyday, Hats made a recovery. For us, it was never about a legal battle with Glaxosmithkline, but about informing other parents of the dangers of Cervarix. My personal justice is when parents make an informed decision on whether to get their daughter vaccinated, based on evidence presented. Our family is not part of the legal battle, we dropped out 7 years ago. That time in my life feels very prevalent right now. For my beautiful daughter’s sake and her right to privacy, this will be the last time I mention her journey all those years ago. My need to speak…. My parents are relying on this crazy Aries to fight for them. I’m fighting, make no mistake!
In everyday life, I spend my days laughing and hiding any emotions under bravado and stupidity. This has always been the case. I have always protected my emotions, and it’s not something I’ve allowed many people to see. Today, it’s certainly a different story. But I’m accepting it and allowing it. I know that Bugsy would much prefer me sleeping 8 hours a night and keeping quiet. So, this 7 week insomnia and writing must be doing his head in…… Can’t say I’m exactly enthralled by the sleep deprivation myself. However, I’m accepting of the writing.
This week, I made it my absolute mission to get my parents into a routine, where I was happy to leave them next week with the return of school. This week has involved appointments, visits from professionals, phone calls from professionals. But still no concrete care in place. So I had to admit defeat yesterday and contact my boss to explain. Regardless of the fact that I’ve just had 6 weeks off school (feel so energised haha!!), I still need more time? This feels crazy! My boss is amazing and I’m so grateful for the team I work with. I’m sure as she received the message, she thought ‘here we go!’ But when Dad was first taken ill, she was so supportive, they all were. It has been suggested that I might have to consider giving up my job to be primary carer to my parents. I love my job, I love the team I work with and I’ve always loved working with children. I’m not ready to give this up!! Plus, financially, I cannot afford to do so. Also, if I gave up work to care for my parents, am I not just making the system work? Grrrrrr! So, I’ll use this next week of life to try and establish some help for my parents. It very much feels like I’m at the foot of Ben Nevis!
The aftermath of the Fit to Drive assessment was quite difficult yesterday!! My Mum was; irritable, volatile, emotional, sad, vocal (nothing new there!), angry, unaccepting, frustrated, arrogant and many more….. It was an exhausting day! Thankfully, the sun was out! After we had a visit from one of the community Occupational Therapists (these people are fab!), I dropped my Dad off to my hubby, who was painting our fences…. Will this ever stop… If this his therapy…. He is now going to paint every neighbour’s fence too???! (This was meant to be my summer job. Long sunny days of painting with music blaring. I couldn’t wait to do this). Well that plan certainly went tits up!
I left my Dad in the capable hands of the painter and took my Mum to Lidl. During the entire car journey, she was aggressively presenting her argument. Completely convinced that the Driving Assessor had made a “totally wrong and rigid decision!” When my Mum is upset, her pitch becomes a squeal! She told me that she wanted to ring the man and explain her side of things. This dementia is providing my Mum with such an arrogance. This is hard. My family loathe arrogance. But she’s now living the dream! She was badgering me for the man’s contact number. Or she was suggesting she wrote to him. (It’s so lovely that my Mum has accepted the verdict and has willingly handed over the keys!). Arghh this conversation has legs and will run, run, run! I will continue to protect the Assessor and comedy genius’ privacy….. And phone number! The Funeral cortège story has to be the highlight of a trying week! What a legend he was! I literally wish I could have filmed him delivering the verdict to my Mum. His comic repertoire was nothing short of impressive. As I recounted the story to our designated social worker yesterday, she was in hysterics! I’ve only known this woman for 3 weeks, but she’s my kind of person! Plus she’s a crazy Aries too … For the win!!
After an ear bleeding car journey, we got to Lidl. Last thing I wanted to do was food shop. I needed a darkened room with a huge bar of Galaxy. I set Mum off with a little trolley and went about my shopping. I bumped into a Teacher, from school, and his wife. I bet he wishes he’d not been shopping at that moment! Usually, if someone asks how I am, despite it being true or not, I’ll always reply “yes, fine thanks” then throw it straight back. But unfortunately when he asked how I was, I’m afraid I let him and his poor wife have it! All the while, my Mum is at large in Lidl. I feel really bad that I dropped my emotional guard. Afterwards, I bet his wife asked who that trainwreck was haha! Poor couple.
After doing the shopping, we went back to my house where my Dad had been asleep on a sunlounger, whilst watching his son-in-law tirelessly painting. It was sweet. My Dad has always said that having Bugsy in his life, helps him cope with the loss of Sacha, my brother. Mum started up again with her argument to suggest the comedy genius had made a hasty decision. “That blasted man! I’m a good driver! He was picky and rigid. I know I drove really well!” I would very much like to ban the word ‘blasted’ from my house. I’m sick of her overuse of the word. It’s not even a great word anyway. In the world of words, it’s pretty mundane, if I’m honest.
Today, I’ve organised for my parents to see Mamma Mia (second one) at the Beehive…. My parents have always been avid supporters of this place. If you were to ask my Mum her thoughts on this local community centre, her buzz words would be; “Marvellous”, “jolly good” and “wonderful!” I stupidly told my currently confused Dad that he will be whisked away to our beloved Greece for 2 hours ……. He now thinks his daughter has paid for them to fly to Greece for a quick bit of sunshine. Nice one, Sophster, nice one. Life is certainly interesting right now, oh Mamma Mia!!