An open letter to friends old and new

As I’m sure you are all aware I have Fibromyalgia syndrome (FMS). What I don’t think you know is, how it has affected me. I’ve wanted to tell you the truth for so long but the longer I left it, the harder it became. When you’ve asked me in the past how I am, my response has always been ‘I’m fine’ because it was a simple and much quicker answer than the truth. The truth is, I wasn’t ‘fine’ and I’m not ‘fine’ now

The difficulty with FMS is that it’s such a complex condition. It affects every system of the body in ways you wouldn’t think possible. Fortunately some symptoms like urine retention, migraines and dizziness are short lived and last only a few hours, other symptoms like numbness and burning sensations are periodic and last days or weeks but widespread joint and muscle pain and fatigue are a constant problem. On a good day, 50% relief is the best I can hope for from my pain meds. Therefore, even on a good day, I still have pain in most joints and muscles which is exhausting.

Over the last 15 years I have almost got used to being in pain every day, it’s become normal. However living in pain is exhausting. Imagine having flu or a tonsillitis, then add in a migraine or period pain for good measure and no sleep to top it off, you would feel wretched right?. All you would want to do is curl up in bed and sleep. Now imagine having these symptoms every day with no end. This is my life. This has been my life for 15 years.

So when you’ve asked me out and I’ve declined, it’s not because I’m a miserable, unsociable cow, it’s because I wasn’t sure how my pain levels and other symptoms would be on that day. It became easier to just say no, than to let you down at the last minute.

I know I’ve appeared ‘fine at work but it has taken a lot of preparation. Ensuring I have taken sufficient pain killers , taking enough time to recover with rest and sleep after work in the evenings and at weekends. My life at work was the complete opposite to time at home. My life became a constant preparation for work, it became that in order to avoid flare ups, I did nothing else but rest and recover on my time off,  in order to prevent sickness absence.

At the moment I feel like FMS has beaten me. It’s become that, despite a whole load of clinic appointments, specialists advice, maximum medication and a 10 week pain management programme my symptoms remain horrific and I’m having severe flare ups every two weeks. When I say flare up, I mean that my pain meds aren’t working, I feel like I’ve gone 12 rounds with Mike Tyson. I’m not sleeping because of the pain and getting up to make a drink is like running a marathon, it’s exhausting! My flare ups last for about three days and result in complete bed rest, then two days of recovery.

I don’t want sympathy, I just want you to understand how things are for me and what I’m going through. I hope this letter will give you a little insight into my reasons for being a miserable, unsociable cow!

Missing you,

Helen ♡