I remember a number of things about that day but not how I felt about the diagnosis. I remember;
- having to get the bus to bath because the trains weren’t running meaning I left RIDICULOUSLY early for my appointment because I always have to get the train/bus before the train/bus that would get you there in time… just in case!
- I had a pain attack in McDonald’s and literally couldn’t move for like half an hour (thank goodness for being early!)
- I was desperate for the loo in the waiting room but worried that if I went i would miss my appoint.
- Being asked if I am flexible in the appointment.. I say No because to me im stiff af but apparently im really flexible and now i see it…specially when im stretching my joints in positions that shouldn’t be possible.
When I got this diagnosis I officially didn’t have this blog (14th September is our 2nd birthday :D) so to begin with I didn’t have an outlet in which to discuss my thoughts and feelings around being in pain 24/7. I have zero confidence in my writing ability but looking back at the posts I’ve written since I am actually really proud of a number of them.
Having Fibromyalgia is no walk in the park, however I won’t let it stop me living my life. Now that throws up two issues and this is what makes me really sad because you can get judgement from both those with fibro and those without for your life choices. Fibromyalgia is different for everyone in my opinion… there are things that I will do that my mum wouldn’t be able to do but it doesn’t mean that one of us doesn’t have the condition. The uncertainty of the condition and the complexity of the symptoms means that you don’t really know how you feel from one day to the next. The weather, surrounding stresses, travelling, working, small tasks all take their toll but the level in which they do can a lot of the time be due to how you feel before you even start. I have once been told by a person that they are surprised that I have Fibro because I am managing to work, on the reverse I’ve got a couple I met in my first job (when I had just turnt 16) and the lady has fibro and we regularly have chats about how its great that I keep going and shes only just stopped working herself. There is no right or wrong way to manage Fibro, there is your way, the way that helps you feel your best. If you aren’t feeling your best though it doesn’t mean your way is wrong it just may need tweaking. Self management and knowing triggers is so important with this invisible illness.
I personally plan on going ahead and beginning my career within the construction industry. It may not be the way in which I planned out when I was 11 years old dreaming of being a building surveyor. I may not find myself climbing up scaffolding or up and down ladders but there is a job out there for me. I really thought that I would find it easy getting a diagnosis, and life would carry on as it was but it hasnt. My world has totally turned upside down in 2 years. I have my desire to work in construction back, I have the confidence to speak out when I hurt and don’t always try to fit in, I now have my driving licence!! (almost a year too!), I have loads of fabulous friends who just get me, even if in some cases I’ve only known them since I went back to uni.
I have a life, it has fibro in it, I have pain ALL the time but most importantly I always wake up with a reason to get out of bed in the morning, even if it takes me an hour and a half to wake up and find the energy!!!
Heres to year 3 and what it will bring!!.