There are a lot of things I am not good at, including riding a bike, but the main one is remembering dates, birthdays etc. I really suck at it, still it was impossible to escape my notice this month that it is all my illnesses awareness month!
Ok not ALL of my illnesses, but three of them the ones I think of as being my main three. Ehlers Danlos Syndrome, Myalgic Encephalomyelitis (ME) and Fibromyalgia have all affected my life in huge ways that I am even not just starting to understand. I felt very overwhelmed about all three happening together, so I thought I would write one post and hopefully that would be enough?
I try to promote awareness every day, but these awareness days, weeks and months are a time to come together to try and give a big push. There are a lot of big charities out there of well known illnesses that get a lot of attention. My illnesses though not as rare as once thought, are all underfunded, hardly researched, and little understood or taken seriously even by doctors.
As such it is the communities on Facebook, pages on Instagram, blogs and you tube channels that give us the support we need. We all have stories of being abused by doctors or hospital staff, ignored by family and memories that sound like they are from a horror movie like Saw…so I will not bore you with my own.
Instead I will simply share how these illnesses affect my life
My Illnesses awareness month:
Ehlers Danlos Syndrome – This illness has always been there, I was always in pain often awake all night due to my legs being so sore. My mother would take me to the doctors who every time would explain it was growing pains, I was sensitive and to try paracetamol. So my parents thought I had a low pain threshold and stopped taking me not that I blame them. It wasn’t until I was finally sent to someone who said it was the hypermobile EDS I was 39years old. Almost 40years of pain finally an answer and a wonderful community, long term physiotherapy and learning not to over-stress my joints that had all grown wrong because I was using them wrong…fun!
My EDS means my joints are very unstable, I often find them out of place and this is getting worse as I get older. I am often in pain and struggle with walking, and sitting because of this. I have to think about every step and every movement because if I do not my body will have more pain because of the joints being in the wrong position. I also have bladder and bowel issues, digestion problems, and its honestly a lot!
Fibromyalgia – I was diagnosed with this illness before the HEDS, but it was the latter that caused the former. The specialist physiotherapist explained that a lifetime of misusing and overstressing my joints was probably why I then got Fibromyalgia. They often tag-team it would seem and after talking to others I think a lot of people struggle because of their close friendship!
For me, Fibromyalgia means every muscle hurts like I went to the gym and did too much yesterday. It is tiring and painful and leaves me feeling like a lump who cannot do anything to help my wonderful husband who is my carer. I also have numbness and tingling in my arms and legs, and chronic headaches that are probably associated as well.
Myalgic Encephalomyelitis – This illness is one that took me some time to get an answer on, but I suspected it for a while. I first heard about this when my best friend Louise and I met and she had been suffering from the age of thirteen. My friendship with her honestly got me through this so much because she reminds me that I can only do what I can and I am not lazy I just have an illness that affects my energy levels.
When my ME is attacking I find it so hard to wake up and get going, my head feels heavy and foggy and walking is like trying to run in a swimming pool! I can easily become overstimulated in loud or busy places and I have sensitivity to light so if it is too sunny I have to have sunglasses or I will get a migraine. The world just feels like too much with this illness, it is very isolating and started the Millions Missing movement.
Together these illnesses have changed my life, sometimes for the worse also a little for the better. I work hard to try and be as healthy as I can and use my You Tube Channel and this blog as ways to spread awareness and help others. They have all made such a big difference to my life, it makes sense that May is all my illnesses awareness month!