Recently I joked to one of my closest friends that I would write a blog about her one day and that I would call her my floppy leg friend. I think she thought I was joking.
I write about this dear friend of mine Chloe, because she has been a game changer for me with my Fibro journey. There have been so many days that I felt I could not go on and she has kept me going. All I have to do is message or call her and she will listen to me rant and cry, agree with everything I am saying (even when I am clearly sounding like a crazy woman) and then turn the conversation into a barrel of laughs. For that I am forever grateful.
We met in October 2017 at a residential pain clinic where we were next to each other on a ward, but taking part in different pain management programs. I was on a one week independent programme (which Chloe had previously already done) and Chloe was on a three week group programme. From the first night we clicked and spent the week staying up getting to know each other’s pain stories as well as giggling like two small school girls in a week long sleepover. I think…actually I know that we drove other patients crazy with our silly chats but we began the best of friendships. We stayed up some nights until the early hours of the morning because neither of us slept well anyway so we just kept chatting.
I have so many hilarious memories from that week, one being when I tried to teach Chloe to crochet. I’m not the most patient of teachers and Chloe is not the most patient student either so we made a great team… The ladies in the beds behind us later informed us that we entertained them greatly while they listened to us bite at each other during this teaching moment, lots of ‘No Chloe not like that’ or patronising ‘Well done you’re getting it’, while Chloe constantly gasped ‘Now what am I supposed to do?’ or ‘Is that the right hole?’. Chloe did manage to produce the smallest of granny squares which a year later I turned into a key ring for Chloe to remember our never to be repeated lesson.
After our week long sleepover we both realised that having a friend also dealing with chronic pain is so different to other friendships. We don’t have to explain ourselves to one another or put on an act to seem like we are fine. If one of us says we are having a crap day the other does not need details or have to ask why, we just know. Sometimes we do share the details of why our day is crap, other times we don’t. Yet every conversation ends up with us laughing even if we were crying to begin with. We have had some of the most random conversations about the strangest things and each time it lifts our spirits.
There have even been days where both of us are so fatigued and in so much pain that we are unable to do a lot so we have spent the majority of the day on the phone to one another talking about anything and everything. We have even made imaginary plans to build a home for others with chronic pain and how we would run it to boost the lives of others in the ways we feel would help improve quality of life…if only we had a rich investor (or husband).
My husband laughs because if we are on the phone together he knows that the phone call is likely to last anything up to three hours. We live an hours drive apart so we don’t get to meet up very often but we still check in with each other most days. My kids absolutely adore Chloe too and my daughter has even asked to be allowed to email her herself. I love this because Chloe also understands how hard I find it being a Mum with Fibro and she makes a huge fuss of them to boost their confidence.
Although we both have chronic pain we both have a different diagnosis. This is how she got the nickname Floppy Leg Friend (FLP) as she has Chronic Regional Pain Syndrome (CRPS) which affects her right leg. At a young age Chloe had an operation on her back and the surgeon drilled into a nerve. This was obviously extremely painful and had to be corrected. Although the nerve has healed, she has been left with shooting pains in her leg as well as back pain. The simplest way I describe CRPS is that your nerves remember the pain of the trauma it experienced, such as a broken bone or nerve damage, and that part of your body also has swelling and colour changes where the pain originated from, usually in a limb (this is only my own description I have used with my children or people I know asking about CRPS, please refer to the NHS website for a more accurate description). Due to the extreme pain she has had in her leg for nine years, it does not function like it should and for her is almost like dead weight. So I have named her leg floppy (I hope this does not offend others with CRPS).
CRPS is a horrible illness that I didn’t know much about until we met. I believe people should be more informed about CRPS because simple things like vibrations, weather changes, even fabrics or water touching the affected area increases their pain in an unimaginable way. From this the sufferer has increased anxiety, which is understandable because if you know how much it will hurt when someone accidentally brushes past you, then you would be on edge all the time. I plan to write about CRPS in more detail one day where I can reference valuable information as well as talk about the experiences of other sufferers that I have met.
I do hope that those of you reading this also have at least one friend in your life who knows how to pick you up when you are down. No judgments, no questions, they just know what you need and when you need it. I believe that having laughter and silliness in your life is essential, especially when you are hurting physically or emotionally. For those of you who feel alone, like you don’t have that one person, please please post a comment, send a message or join a group locally or online. Try and find someone who can make you smile through the tears, they are worth their weight in gold.
Chloe, I love you dearly and I am blessed to have you in my life 😘