My Invisible Illness Info

Even as I write this I feel a slight tug of reticence.  This is the effect of having 'hidden disabilities' or an 'invisible illness'.   It is a form of inhibition that I, as an actor and teacher, find slightly alarming. Why should I feel any sense of diffidence when it comes to sharing information about my 'invisible illness'?  I think this fear is reality for so many of us.  It is also what propels me to make it a very live part of this blog.  I am not suffering from these illness', I am living with them.


I was diagnosed with FMS in 2011, years after the initial referral to the specialist in Rheumatology. This is fairly common as I understand and I remember the day I went to the GP to complain of pain all over, especially in certain areas of my body-I said being touched hurt and that I found myself walking in a fog where I seemed to be watching myself move, but somehow detached.  I described to my GP many symptoms I now know are common in FMS.  She wrote on my notes, obese, depressed. I was dumbstruck.  'I'll order some blood tests and you can self-refer to a counselor.'  She was not kind.  Thank goodness my bloods came back with a positive for HLA-B27 and her attitude towards me changed. My struggles with pain and severe fatigue have been kept from everyone who knows me in all areas of my life; with the exception of my husband who is my rock. It is not unusual for me to sleep through the weekend to 'store' enough 'spoons' for the coming work week. I teach Drama and Psychology in a High School and I love my occupation. I manage my symptoms so that I can be my best at work for the children who are our next generation; modelling positive lifestyle choices. So much has thankfully changed over the last fifteen years, but there is still a long way to go raising awareness of Fibromyalgia and by blogging, I hope I am a part of the solution.

'Systemic lupus erythematosus (SLE) is an autoimmune condition, which means it is caused by problems with the immune system. The immune system is the body's natural defense against illness and infection.' NHS 2014.  
I was formally diagnosed in December of 2015.  I can't tell you what a relief it was to finally have one of the puzzle pieces of my health fit into place.  What a blessing to know that whilst there is no cure, there is evidence that with certain medications, the symptoms and possible destruction of self, through the attack on healthy tissue and organs, can be halted.  I was immediately advised to start taking hydroxychloroquine and I was already taking methotrexate, so it was felt this was a good combination.  I have to say I was VERY reticent about the hydroxy, I researched vociferously and spoke at length with the drug counselor.  In the end, I read a research article that followed their subjects long term and found that the lifespan of those with Lupus on the drug was increased by several years.  That got me.  I am happy to say that after 6 months, I am really feeling the benefits of improved energy.  It is not perfect, I still have tough days-but, markedly better.  My only side effect has been hair loss-my brows are losing a lot!  But, I plan on trying a few growth serums over the summer and into the autumn.  Biggest hurdle is getting all the hair from the bathtub drain too!  My psoriasis did flare greatly after the first few months-still pretty bad.  But I will stick it out for the benefit of the energy at this point.  My wolf mask is a hurdle and I still am working on the best makeup to cover it and not look blotchy-sunscreen is a must-I have just learned about a Bioderma Spray on Sunscreen from Boots-will be getting it for the summer and will post about it.  Butterfly kisses.

EDS (hyper-mobility syndrome)

Obsessive Compulsive Disorder (OCD)


Psoriatic Arthritis 


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