Through The Looking Glass

To look at me, you honestly would not think I am disabled. Genuinely. Except when the bags of my eyes resemble designer luggage and I look like I am about to drop/burst into tears/collapse, I look completely normal.

I'll deal with this in two parts, or we will be here all bloody day.

Just to give people the cliff notes I have been variously diagnosed with:
Asthma
Severe Clinical Depression and Anxiety (it's actually called Major Depressive Disorder. That's when it doesn't exhibit any, more serious pathologies but can have a massive impact on your life)
Hypermobility (which may or may not be Ehlers Danlos Syndrome. Jury is out, but GP thinks it probably is)
Arthritis and Chronic Pain Syndrome
Skin hypersensitivity (which is no bloody fun) and eczema.
Allergies. Seriously. The world's most bizarre ones.
And.... Asperger's.

PART 1 - ASTHMA TO HYPERMOBILITY

The asthma is a family thing. In fact most of what is wrong with me is genetically based. I have asthma, my sisters have asthma. So far it hasn't shown up in the next generation, but hey. Mine developed at age 18. Life is not fair. I've had less than a dozen serious episodes, but believe me they were not fun. Becoming confused due to hypoxia and then enduring days of foul-tasting steroids is not my idea of fun.

The Depression. Diagnosed at 19, evident from my teens. I've been mediated for most of the last two decades. Barrel of laughs it is not. Medications I have been on have included SSRIs, the unholy hell that is tricyclics (I became nearly psychotic on them), antipsychotics to knock me out, benzodiazepines for Anxiety. The illness has caused me both to lose dramatic amounts of weight and the resultant meds put it on. My metabolism has been shot to pieces for most of the last 20 years. So I gain weight easily and struggle to get it off. I am mostly well, but I tend to relapse in one shape or form about once every two to four years. I'm pretty good about recognising the alarm bells (tearfulness, insomnia worse than usual, change in eating habits...), but often I will still crash. It can come after stress, but mostly can come completely out of nowhere. When people refer to it as a black dog, it's with me all the time, mostly in the form of a small dog I can control. Then it gets to the size of an Newfoundland and drags me along behind it, squashing me underneath.

Hypermobility: basically I have a fault in one of the proteins that make up the body's connective tissue. What this means is my joints are hyper flexible, as it affects my ligaments and tendons. I scar really easily. Two colonoscopies have shown I have very long and tortuous colon - meaning it moves about and I also have a reverse loop in my sigmoid colon. One too many twists and it is not funny. Now this isn't supposed to happen, but is linked with a condition called Ehlers Danlos Syndrome - another in the family of connective tissue disorders, with varying forms and degrees of severity. What I can tell you is that I can hyperextend and dislocate in my sleep. I can walk down the street and my ankles can give way. I can move normally and all of a sudden I put my neck out. It's responsible for my mild scoliosis and why I am not allowed to work my legs on fixed weight machines, because I hyperextend my legs. Impact sport is also banned for the same reason. I can bend backwards to 90 degrees and do things with my shoulders that make people nauseous. One plus is that my joints bounce back a bit like shock absorbers. The down side is that if I then damage the joint (or area) adhesions can form on the joint and that is excruciatingly painful. If you don't believe me, try not getting the right treatment for SIX MONTHS, because your shoulder wasn't behaving like it was frozen. I have custom orthotics, because otherwise I would fall over frequently.i own my own stick and crutches, because I have sustained grade two tears of ankle ligaments more times than I can remember. I spent most of my childhood with knees covered with Elastoplast to the point I am now allergic to the adhesive. So much fun. Really.  Not. I've seen some of the symptoms in other members of my family, with degrees of it causing issues. Thanks, family genetics!

By now you're probably thinking that this is all a bit much. Yeah, it is. But stay tuned for part 2! Coming soon to a blog post by a whinging spinster...