‘Life was meant for Good Friends & Great Adventure’! It’s got me thinking…..
I met my husband/ best friend at university and much to everyone’s surprise we actually stayed together (19 years in Nov), got married and had two children. I had occasional bouts of sickness that we put down to allergies, hormones and stress (now we know they were migraines). Then I got really sick, the facial pain so bad that I couldn’t lift my head off of the pillow (diagnosed as trigeminal neuralgia-it wasn’t). Well, I say, really sick, remember everything is comparable. After a few weeks of painkillers and starting amitriptyline, I gradually got a bit better. My quest began to find an holistic therapist, but I was constantly disappointed; each one unable to help resolve my constant headache that plagued me. My boys were, young still, so I worked part time, I couldn’t have done more. So I struggled through, with low-mid level pain on most days. On my days off, including weekends, my pain spiked, so I was amazed when I eventually found a kinesiologist who helped; with diets, homeopathy and tinctures.
Life carried on in a similar pattern for the next 5 years. Although, adventure came back to us. I finally found real relief when I was referred to a cranial osteopath who practiced kinesiology. I got fit, doing Pilates and swimming regularly; I built my career to senior level and we socialised with friends. Our friends started getting married and having babies too and we loved visiting them, just as they had years before, when Zeke was born. We went for days out: to zoos, farm parks, museums etc. Joel and I started going to see live music again; our shared love of music, so important to us. We made memories in Rome and Tuscany, the south of France and our trip of a lifetime to California and British Columbia! Those years, filled with happiness, exploration and living LIFE! How little could we know what would happen to change our world forever; tested our friends and arrested our zest for adventure. It sometimesstops life for a while, but we are beginning to look at it differently; a new adventure so to speak. One that has tested us to the core, but we’re strong, and it’s reinforcing us a unit and making us more formidable. People call me brave, I don’t think so. I just have to do this! You would be too, if it were you! (But I wouldn’t wish this on anyone). But it’s not just me that has to be brave: Joel, Zeke and Luca are just as bold, they fight this battle with me; grieving, angry, resilient, sad and determined in moments; how it affects us all in turn.
Becoming ill in 2014, tested mine and Joel’s relationship; I guess it still does regularly. He has to work so hard: not just looking after the kids, working, cleaning the animals, sorting the house and garden out. He is also an unpaid carer; helping me get ready for bed every night because I’ve no energy left to pull off my socks. He has to help me to the bathroom when I struggle with those measly few paces, he even has to help me shower when I can’t. Someone told him the other day that he was a better man than them, that didn’t think they could stay if it was them! Joel was stunned, but many relationships fail due to a partner becoming chronically ill. Our love for each other hasn’t changed, even though our life has. I am only brave enough to fight, because of our marriage: built on love, understanding and the need to continue to make each other laugh! I will always have that friendship and love, I trust and I know (because he keeps telling me-tee hee). I know I’m lucky,
I’ve spoken before about how blessed I am to have kept so many friends. Due to my vulnerability; some people have become very special to me, because of what they do for me, which can be as simple as sending me a card to say they’re thinking of me, giving me a beautiful bunch of flowers or something unique, like my friend who gave me a toy of Merida from the film Brave when I went for my surgery! I’ve spoken on numerous occasions about new friends I’ve made through social media. This can be hard to understand, but when you get so lonely, to know that someone is always in the iPad, is a huge relief 😉. You can rant, because someone will have been there; you can be silly and they laugh with you (well, so they say); you can cry and someone will always listen and give advice. My network of friends that help us out in myriad ways are, as always, our life savers. They help our fragile world to keep spinning on its axis. You know who you are; thank you! .
I haven’t been brave enough to speak about the few friends who have disappeared. I don’t want to upset anyone and it’s still raw. I question it often; what did I do? say? I don’t think I did anything. Talking to my online friends; I’m lucky, most people lose many more friends than me. A friend went off radar within weeks of my illness becoming serious. A best friend that I’ve shared live changing events with. Gone. I know it shows that they never really had my heart, but it still hurts deeply. Then, there are the friends that disappear for months and then suddenly message you, expecting you to jump and arrange to meet. I was tolerant until recently, but I’ve decided now that they are not being friends. If they were, then they’d know that I’d had brain surgery and would have been in contact to find out how it went, in fact, one ‘friend’ ignored my text telling her all about it! Now, more than ever, that I’m fighting anemia and trying to tackle an under active thyroid too, I’m starting with less energy each day, therefore I just haven’t got anytime to waste on anguish. (P.S if you’ve reacted to any of my FB posts, then that counts as connecting, *sigh of relief now)! I’m hoping some of these friends will realise what they’ve done before it’s too late. For some, honestly, it’s too late already!
My New Life, friendships and adventures; now that I’m a spoonie!
So my new life, we know, consists of lots of sleep in the day and no sleep at night (currently (2:30am); leaving not much time for adventure! I’ve been bed-bound for most of the last 5 months with my biggest adventure being a trip to Cambridge to get a piece of skull removed. I’ve missed adventures with my children, such as watching Luca singing in his many shows and going swimming and cycling with them (and Joel)! Now an adventure for me is to get downstairs once every weekend! This has become one of the highest sought adventures any member of our family could ask for. We all get so excited if I make it. Luca got excited about us watching a film together in bed this afternoon; Zeke and I have 1:1 chats when the rest of the house is quiet after school; Joel and I get excited that we can watch ‘Bones’ if I make it downstairs! ”
I want to get some of what we had back. I know that is unlikely, but if I can get just enough to join in with life again, have some kind of adventure and my biggest dream; to be able listen to music again! We can’t wait for the day to come when I can make it out for a trip to a cafe for tea and cake. Maybe this stent might make it a reality. Whatever happens, I’m building my strength and stamina up so that we can use up our Christmas present experiences. Joel has a voucher for a spa afternoon (he might take me too 💕) and I have a pedicure treat. I am determined to prepare myself for these. All of this is preparation for the biggest adventure of all, the only thing that we’ve planned for ages; Joel’s 40th birthday party later this year. I am determined to be able to cope with going to some of the party and ideally stay long enough to see him play with his band. Although we don’t know how I’ll be, this time we have to make sure an adventure isn’t missed because of me! So it’s fingers crossed for that operation now. Let the next adventure begin, with the support of my family and friends behind me; I can take on all this new life has to throw at me! Maybe I am brave, if it leads me to be free then I’m in!