Clinging to my diagnoses

I feel an almost desperate clinginess to my diagnoses.


They were hard won – lots of home research, tracking down of doctors.. months of analysis of my symptoms.. but also because they are validation of what I am going through.. Because my illness is invisible, no one can see how I am struggling or suffering. In fact most people I meet tell me I look so well (bit of weight loss and a big smile seems to elicit that response). So here is a breakdown:

A Fraudulent member of the Ehler-Danlos family.

EDS is also known as joint hyper mobility syndrome. I’d always known I was fact I was known for it…splits both way at school with no warm up or practise (Awesome!). In my 20’s a pub trick was straightening my elbow too far and wiggling it (hilarious after a few pints). When I found out that EDS was the root of all my problems a good friend said ‘not so cool now’.. spot on!

Fraudulent because most people with EDS suffer with intense chronic pain and joint dislocations. I am so lucky because I don’t get this. I get the odd niggle, particularly if I don’t look after my joints, and I have two hernias… but that is it… maybe that is why my body feels it needs to go full on with the mast cell issue…

EDS affects the connective tissue, which is where the mast cells live. Which brings me on to my main nemesis:

Mast Cell Activation Disorder. A really rare condition linked with EDS. Mast cells are the allergy cells. When they detect a danger, they explode, their contents being released into my body. One of which is histamine. (Mention this to anyone and they say, ‘yes, I have hay fever too…’)

My mast cells are very paranoid and see pretty much anything as a trigger:

Food: I can only eat 23 foods (up from 15)

Temperature: I can’t get too hot (I am literally allergic to summer) or too cold (wtf)

Exercise: If I do anything above a gentle intensity I have a reaction.

Tiredness: (hilarious because too much histamine stop you sleeping)

Stress: someone described a study where mast cells popped like popcorn when the person was under stress..

Pollen or any other allergens.. the list goes on.

When they a triggered I feel sick, dizzy, tired, brain foggy.. if this carries on, I stop absorbing my food and start to lose weight with scary speed. I can also have the feeling that my throat is going to close. It has only actually happened once, but the feeling is intensely uncomfortable and scary… it also earned me two epipens. Lots of people with MCAD have anaphylactic reactions, I am lucky that i haven’t so far, but i seem to be edging closer each time I have a big reaction.

Lastly POTS. (yes, like deliciously Ella)

Postural Orthostatic Tachycardia Syndrome. Again, I own this diagnosis slightly fraudulently: When i was tested a couple of years ago, I was much improved and I came up as ‘POTSy’; having some signs, but not fulfilling the criteria for an official diagnosis. I was OK with this and declined the midodrine trial at the time… ERROR!!! My current flare up (bad one…cant work) has featured many POTS symptoms. I was asked to do some home testing of my blood pressure and heart rate at home. This showed two things. One my blood pressure goes scarily low (78/48…not good) and that when I am feeling bad I have a raise of heart rate of over 30 when I go from lying to standing, and this is sustained for more than 10 minutes. In fact it gets worse the longer I stand still…

So now I am trying midodrine… Because of my crazy mast cells I have to start this off very slowly: Normal dose is one tablet 3x a day. I am starting on one every other day… and I think my body is reacting to it..

So my body really needs this drug.. but it is reacting to it. Meanwhile my function is deteriorating… I am losing my main job and I can’t look after my kids for a whole day on my own.. scary times… but I mustn’t get stressed, my mast cells won’t like it (!!!)

#mastcellactivationdisorder #mcad #mastcellactivationsyndrome #mcad #posturalorthostatictachycardiasyndrome #POTS #eds #ehlerdanlossyndrome #chronicfatigue #chronicillness #invisibleillness #spoonie #zebra #clingingtodiagnoses #gottolaugh #longtermcondition