Support networks are like a backbone – if you don’t have one, you won’t be able to stay standing. They enable you to put one foot in front of the other and are always there for you. There are no rules to what your support network should be made up of, it just needs to support you. Simples.
I’m so incredibly lucky to have a fantastic support network – I know I wouldn’t be in a positive place without them. Family, friends, work colleagues, medical advisors and complete strangers are the ingredients to my own personal support network.
I’ve been very lucky to grow up surrounded by love, support, encouragement and belief from my family. My mum would be with me at every single appointment and be brave when we got bad news so I wouldn’t get too upset. My dad would take me to the hospital for various MRI’s, X-Rays, tests and results – even if it meant missing the football, he would be right by my side. My brother would let me play with his toys and arrange gaming nights where we’d be up all night playing Crash Bandicoot and sneaking downstairs to raid the fridge for a midnight snack. My grandparents would send me letters and postcards simply telling me they loved me or were proud of me and would make the special journey to cheer me on in the school production. My parents still take me to hospital visits and my brother will lend me DVDs and buy me my favourite chocolate bar when I need cheering up.
In 2010 I met a very special person who has since become a vital part of my support network. My boyfriend of almost 6 years, Simon, has stuck by me through the good times and the bad times that my illness has thrown at me and I can’t thank him enough for everything he’s done for me. He’s been there when I’ve received my diagnosis and helped me celebrate the small achievements like climb the stairs without stopping or having a low pain day. He’s been there when I’ve had horrific flare ups and been treated with discrimination from the public and medical world. He helps me get out of bed, get dressed, put my heat pads on, walks me home, keeps my spirits up and so much more. There aren’t enough words to say how much I appreciate everything he does for me. He’ll meet me from work in the pouring rain just to carry my handbag for me because it’s too sore for me – that’s the sort of person he is. He helps me in every aspect of my life and he never, ever complains. I really don’t know what I’ve done to deserve him and his love but I really am the luckiest girl in the world to be able to call him my boyfriend. His family are incredibly supportive and I feel very lucky to be a part of their lives. I have two wonderful families who are always there for me – even through the ugly times!
I’ve lost friends as a direct result of my illness, and possibly their naivety, but I have some brilliant friends who I couldn’t be more proud of. I feel truly blessed to have them around me. Best friends from my brief time at College who always have my back and even though I can’t see them right now due to my illness I know they’re always right by my side and for that I’ll always be thankful.
There is one special friend who deserves a mention. My crazy best friend who’s over 300 miles away in Scotland. She’s my rock and I honestly don’t know what I would do without her. We ‘met’ during a special Christmas card exchange for Spoonies and we’ve been inseparable ever since. As a fellow Spoonie she knows what it’s like and enjoys celebrating the small things and sharing in my pain when medication just doesn’t work. We haven’t actually met due to the distance and we can’t just jump on a train because our bodies would probably break quite a lot but it’s like we were friends in a previous life – we were destined to be in each other’s life. I’m not a religious or spiritual person at all but she’s special. Just like my boyfriend and I were meant to be, so were me and Lu. We text all day long, chat on Facebook, send cards, send letters (20/30 page long letters that we like to call novels!) and even have girly nights in watching TV or a film with a glass of wine or chocolate! It can be quite problematic getting the film or catch up programmes to synch up but it’s worth it.
I’m so lucky to still be able to work and I’m not going to sit here and say it’s easy – it’s not; it’s really hard at times. However, I work with a really special bunch of people and they help me tremendously with everything. Opening doors? Opening my lunch? Getting me drinks? Carrying and moving things? Check and check. They’re brilliant. They cringe when they hear my joints click and pop when I stand up, and they laugh at my funny brain fog moments on a daily basis. They keep my spirits up and will protect me to the every end and I can’t imagine going to work without them there waiting to pull a prank on me or to have good banter with. I absolutely love the work that I do and for that I feel very lucky, but to have a fab job AND work with such a lovely bunch of people? It doesn’t get much better than that. All that’s missing is a cake cupboard in the office!
It took me a long, long time to have a stable relationship with doctors i.e. to not be passed from pillar to post because they couldn’t find anything wrong with me. I have a really lovely GP who will do research on my conditions to better understand it and to make sure she provides me with the right treatment. She’s always thinking of new ways to help me and goes above and beyond – something I’ve never had before. My specialist at the hospital is very thorough and always listens to me. I know that sounds a bit ‘generic’ because shouldn’t all specialists be like that? Yes they should, and for the most part they are, but he’s the only specialist I’ve ever had who has determination in himself and belief in me. He also does something that I think sets him apart from the rest – he does exactly what he says he’s going to do and then some.
He said this to me at my last appointment and it’s something that’s stuck with me ever since:
No two people are the same, even if the condition they share is the same. People evolve and develop different needs and requirements, just like the condition. Everyone is individual and unique and should never be treated the same, that’s just naivety.
I really do believe that support networks are probably more important than pain relief medication. That might be met with mixed reactions but that’s just my personal opinion. You need people around you to talk with, vent with, laugh with, socialise with and cry with. I know my life would be a whole lot harder without the support network I’ve got all around me.
spoonielolz 