Friday, 22 May 2015

2 Years Steroid Free

So the day has arrived. I am now 2 years free from using topical steroid creams.

I am however still suffering though. I'm just going to keep this post short and sweet as I have a lot to do today (see: cake), but I can say that even though I'm still having blips and flares (mostly due to infections!) it has still been the best decision I could have made. I was looking at some of my old photographs and even though I still get blotchy rashes from time to time they are no where near the same in their formation.

That isn't me any more. The rashes are completely different.

I'm also pleased to say I'm no longer suffering from some of the unwanted side effects of topical steroid withdrawal either. For instance I no longer suffer from this:

Elephant skin

Nor this:
Full body coverage

Or this! 
Red sleeve effect

My allergies have distinctly diminished, though still exist only in a lesser form of severity. Life has been slightly easier to endure, though it would still be nice to be given an end point to this suffering. It would also be nice to stop getting so many bloody infections too. That is my main nemesis at present - not withdrawal but infections, both viral and bacterial.

I hope everyone else is well, and I hope I have given others courage to partake in this wretched journey that we should never have to face to begin with.

Best wishes,

Tuesday, 12 May 2015

Jinxed for Infection

So I clearly jinxed myself the other day as out of no where an infection has taken hold. Miserable and peed off that I had to ring in sick. *le sigh*

Currently sat here with kitchen roll strung around my neck/ clutched to my face to staunch the yellow ooze.

Me before going to the doctors this morning.

Hey there gammy eye

Saturday, 9 May 2015

23.5 Months Steroid Withdrawal Ramble

Hey guys, never fear - I'm still alive!

I'm nearing the 2 year mark! Things still aren't going brilliantly, I'm still having flares and such and still taking Ciclosporin but overall I don't have too much to complain about as I've been able to go to work and live life a bit. I believe it has been nearly 2 months since my last infection so that's pretty great going for me.

I have a dermatology appointment at the end of the month in which I was going to inquire about the Dupilumab trials/ other biologic treatment, but I'm still unsure as of what to do. I do however feel I need intervention in order to carry on with my job and such. My goal this year is to be working a different job with full time hours. I'm fed up of being ill and I want to get on with my life's ambitions, of which have had to be put on hold because of being poorly. Saying this, I'm not sure what my career goals are. I've been aiming towards working in an office environment as I think that will be better for my health, but all in all I'm at a loss as to what I want to actually do. I'd love to get into copy writing or some such but not too sure what the preferred route is into such an occupation.

My diet could be cleaner, as I say every time I write a post. I do my best to eat well and reduce my dairy intake, however in the last few months I've put on a little bit of weight which I must do my best to shift. Exercising vigorously has still been somewhat of an issue though when I have endured flares so I just do what I can... which admittedly isn't a lot.

At the moment my face is doing alright, though it was far better yesterday. My arms and chest need a little bit of work and the backs of my knees have signs of irritation but overall I seem to be doing alright. I've been mostly pale this week which is good news.

Also my little space on the internet is about to hit a quarter of a million views. That is quite frankly, insane! Thanks to everyone who visits and I'm so happy from reading your comments and emails that I have been able to help so many of you to know that you're not alone, and to even show people that they may not just have 'eczema' any more, you may be suffering from red skin syndrome/ topical steroid addiction. But I will apologise for being distant. I think I'm just going through a bit of a blogging rut, which many people do, but it has been nice to take time out and reflect.

I hope everyone is doing well!