The support we derive from other people can come in many forms and for me any support in whatever way someone has offered it has played a huge part in how I’ve been able to cope with my diagnosis. Having people to let off steam to, confide in and give you a shake when you need it is vital and I feel like my appreciation for the support I have has deepened since being diagnosed.
One of the most important impacts my friends and family have had so far on my condition is helping to reduce my stress levels. As explained in another of my posts I believe stress to be a major factor in causing flare ups and accentuating my symptoms. Having an understanding and patient support system around me has meant that I no longer have to deal with those stresses alone. From my friend in Australia who I first opened up to, to my wonderful ‘Crew’ (as I call them) who practically performed an intervention on me one night when we were out for dinner, and my amazing family who have seen and put up with it all, not one person is of any less value in my eyes.
My family and long distance friends (known as the A-Team) have been phenomenal. I can’t have been easy to live with for the last year or so, and they have all seen me in and out of hospital, experienced the same concerns about any tests I’ve undergone, and worried for me more than their fair share. I feel sorry for the anguish I’ve probably put them all through, yet they’re still here, still by my side and still making me feel as if I can combat anything life throws at me – and making sure I do.
Until the Crew confronted me about my situation I felt quite isolated within my own family. I had the A-Team who I trust and adore, and I love my family too much, so as far as support goes I couldn’t have taken or expected any more from them than they selflessly gave me. But my localised friends, the ones I can hug and physically see, were so integral to the wider situation and being emotionally cut off from them was detrimental to my confidence, self belief and self worth which of course made my symptoms worse. As soon as my stresses were out in the open (when I say ‘open’, they were still very limited within a very tight group) I found myself opening up too and let my amazing Crew in. If they had never had the courage in themselves or the confidence in me to be so upfront, I would still be hidden inside myself and more than likely be struggling with my diagnosis far more than I am today. I had them, my family and the A-Team to turn to when I was diagnosed and they have all been with me every step of the way in supporting and figuring out my fibro – one friend even rushed to be with me for blood tests on the day of my diagnosis. It has made life so much easier… if I’m quiet and tired, they understand and gently encourage me to talk things through. If I feel like I shouldn’t be socialising, they would carry me if they needed to to make sure I never miss out. If I get stressed they talk things round in circles with me for hours until I can make sense of it. If I’m in pain, they make me smile. They let me cry. They let me rant. They make sure I keep perspective always and stay focused on the positives in my life. And they never, ever complain. They also never treat me like I’m broken or sick, but at the same time always try their hardest to understand that my thresholds are different.
Knowing there are people around you who you can talk to, or come to appointments with you, or tell you to get a grip, or fight your corner or pick you up if you fall has been a lifesaver for me. Its a huge bonus if they understand (or make every effort to) and genuinely want to know how best to help you. On the other hand, I totally appreciate that not everyone has this luxury and I do feel incredibly blessed to be one of the few who does. I have had to think of myself a bit more and phase people out of my life who aren’t supportive or contradictory to the term ‘friendship’ or bring unnecessary stress, and can definitely see how easy it would be to become isolated. Sometimes its easier to deal with things on our own right? In my opinion… wrong. In light of this I have added links below of some great online support networks that may be useful. Please do not suffer alone if you can help it:
No tips here… But some of the types of people I’m grateful for:
- The ones who message you any time of day or night to make sure you’re ok.
- The ones who come up with educated suggestions on diet or exercise, purely to help.
- The ones who put up with your mood swings or snapping and forgive you regardless.
- The ones who are brave enough to intervene.
- The ones not afraid to metaphorically slap you.
- The ones who go running with you, but walk with you because you hurt too much.
- The ones who take you for coffee but only let you have one because caffeine makes you ill.
- The ones who take a 2 hour train journey to meet up.
- The ones who tell you eating the chocolate brownie you desperately want wont kill you.
- The ones who tell you you are worth more than you think.
- The ones who encourage you to use your situation to inspire others.