What NOT to expect…
I've been diagnosed with Systemic Scleroderma recently and have spent the past year or two, having many tests done on every part of my body, firstly to see if there was any damage already, and then several more rounds to establish a base line, and measure the progression. This hasn’t been easy. Although most of the tests aren’t too painful physically, the emotional roller coaster of uncertainty has taken a toll. I’ve never really experienced anything like this and struggle a great deal at times. They call it the disease of exception, as the variables are immense, and on a good day this can mean a sense of optimism and hope, but a on a bad day it triggers those feelings of uncertainty. I’m finding the uncertainty the hardest to deal with. I have bouts of insecurity that overwhelm me, and have a tendency to just loose it… and that’s just soooo attractive don’t you think? As you can imagine, I then have a shit load to clean up. I tend to apologise alot at the moment. ALOT
Physically, it’s a moderate challenge at this stage; emotionally it’s a bloody massive one.
I get these things called Infards on the end of my fingers, they’re lumps of collagen/scar tissue which are trying to push their way to surface (a bit like a splinter would) only the scleroderma creates a hard shell on the surface of the skin like armour so there ends up a battle. And Ohmygod are they sensitive, it’s like having a dozen paper cuts on my fingertips that are all attached to my nerve endings… Using a pen is hard, as is opening things, especially putting on make up and you all know I like to have a face on! And of course they’re fucking tiny and everyone looks at me with that face of “ it’s a tiny thing on your finger what are you making such a big deal about’ and then I start thinking ‘ Lena, you’re such a baby it’s just a little thing on your finger get on with it’ … until I find myself in the bathroom balling my eyes out…They last for months, and being an autoimmune disease, I get infections at the drop of a hat, antibiotics are my best friend, and you know what that means don’t you girls….
Winter is horrendous for Raynauds (spasms in the blood vessels that effectively cut off circulation and turn my fingers and toes blue) but the turning blue is not the painful part. As the blood returns to those areas they burn like they’re on fire inside and they itch so much the only thing I can do it clench my fists until it passes. And that probably happens 5-8 times a day. Stress and smoking are also trigger’s for a Rayauds Attack. Hello guilt!
Smoking is getting the better of me at the moment. I have trouble breaking out of this viscous circle of it being the stress management technique I use to manage pressure caused by, among others, trying to quit smoking and the guilt associated with the failure to do so... I told you I’m having a hard time of it of late.
The Esophegeal Reflux is an uncomfortable inconvenience, though not too hard to manage if I cut out coffee, chocolate, spicy food, foods too high in acidity, smoking, eating in any posture not sitting up straight, and not lying down afterwards for a few hours, and remembering to take my pills everyday… I mean for fucks sake, that IS my diet!
I also have heaps of Spider-veins all over my face and body, which although aren’t painful at all, are ugly, and a constant reminder that I’m not normal. Don’t even think it…I know I never have been, and what really shit’s me, is I can’t remember ever wanting to be normal in the first place, and then THAT starts freaking me out! When did I get so neurotic????
Exhaustion is the battle with the most casualties I think. I’m pretty much always tired. I don’t tend to socialise much these days, conserving my energy to get through the working week without taking too much time off so I can hold on to my job, get, and stay out of debt. This frustrates the people around me as I often cancel on them. More apologising… and for many reasons they’re not always so forgiving. It also puts a great deal of pressure on those closest to me to make up for my lack of entertainment and social interaction. I am all to often too overwhelming, exhausting, intense, needy, scared, uncertain, frustrating, angry, suffocating, and terribly lonely for them to handle.
Thank you so much… for your patience, understanding, forgivenes, and loyalty... I, know who you are.
I’m not looking for sympathy guys, truly (because we all know where you can find that… between sex and syphilis in the dictionary!) Some support, understanding, and humour would go a long way at the moment. I’m struggling and am reaching out for a bit of tenderness and humour. You’re all really good at that.
There won't be too much more on the subject at present but you know me.. I'm not one to keep it all inside, I can't.. it simply bursts out at the seams anyway.....