Monday, 30 April 2012
I’ll be honest, the days since my first post have not been fun. In a single word: Ouch! Actually there have been lots of other words coming out of my mouth but I did promise to keep the more colourful ones to a minimum!
RA seems to have settled rather (un)comfortably in my fingers, wrists, elbows and ankles and, whilst that is a lot, I can’t tell you how happy I am that it is deciding to leave my knees out of the party for a while. They were excruciating when I initially went to the GP, resulting in my BF having to put my shoes and socks on for me and deposit me on the sofa for the majority of each day! But even without the involvement of my knees the constant pain has been relentless and is seriously testing my resolve.
It’s a strange pain and trying to explain it feels like trying to describe the colour blue to a blind person. Sometimes it’s a sharp pain that everyone will have experience of, like when you bash your wrist on a table corner, or bend one of your fingers back. This tends to come on as a sudden stab, for no apparent reason, and usually draws an expletive or two (and a few tears if I'm honest). But most of the time there is a constant, horrible, achy pain like someone is steamrollering up your arm and slowly crushing all the joints,. Or they are wiggling a pencil into that part of your elbow known ironically as the “funny” bone and sending waves of burning tingles right to the tips of each finger. These pains are the ones that keep me awake at night, or make it impossible even to press a tiny button on the TV remote. Don’t even get me started on the restrictions this causes when attempting tasks like brushing hair, teeth or putting make-up on.
Having seen the Rheumatologist on Friday, I’m back to my GP tomorrow for stronger painkillers and anti-inflammatories to try and get this under control whilst we wait to start the actual disease treatment. Fingers crossed (haha or not!) by Tuesday evening I might be able to shed the distinctly dishevelled look I have adopted over the past few weeks and go back to not being quite so dependant on my poor BF. (Although he does make a gorgeous house wife!).
I should of course mention T1D as he isn't considerate enough just go on holiday when I have something else to deal with. Its fair to say my ongoing war with him has definitely taken a bit of a back seat through all this. However the main thing worth noting is that one of the side effects of steroids, which I'm taking to trying and reduce the acute RA inflammation, is that it greatly increases blood glucose levels. So whilst I’m rattling with all the RA pills, I’m also sloshing about with an additional 30-40% of my usual insulin requirement to try and keep him quiet. This requires more frequent finger-prick testing than normal which is just what I need with sore hands!
Honestly, I think I deserve a degree for even starting to manage all this, or at least a nice, big, shiny medal!
Wednesday, 25 April 2012
I suppose the best place to start is to explain who I am and why I'm choosing to start this blog.
I'm a 28 year old female, living with my boyfriend just outside of London. Most of my time is split between working, spending time with friends and family and entertaining my two crazy boxer dogs! We are also currently in the process of selling our flat and buying a proper, "grown up" house before the BF and I embark on the journey of engagement, weddings and babies!
I also have two major auto-immune conditions, known as my Gremlins.
According to the dictionary a gremlin is a 'mischievous invisible being'. Well thats sounds just about spot on.
Gremlin #1's name is Type 1 Diabetes, or as he will be known from now "T1D" . He officially set up camp on 1st October 2006 and has been an ever present pain in the bum since. We fight regularly. Me with insulin, needles and cannulas, him with inconvenient high and low blood sugars, tiredness and a general feeling of yuck.
Gremlin #2's name is Rheumatoid Arthritis, or "RA". He is a new edition to the party, infact I only had the diagnosis confirmed yesterday, although we have suspected his presence for a week or so. His contributions to me are constant joint pain and stiffness of varying severity, even more tiredness and yuck and an overhwhelming urge to tell the world to sod off.
I could spend hours going into detail about the symptoms, effects and treatment of these conditions but there is already thousands of places you can get that on the net and thats not really what I want this blog to be about. My way of dealing with each diagnosis has been to seek out others with the condition and get honest accounts of what I should prepare myself and my loved ones for. It makes me feel better to be proactive and each persons story is proof that my life is not about to end on the pages of a doctors lab report.
That is my hope for this blog. That someone else searching for an answer to "What the hell does this ACTUALLY mean for me??" amongst the medical jargon, might find it helpful to read about what living each day is actually like with these conditions. Be warned, I'm not promising I will be a constant source of positivity and strength, I already have my moany, leave-me-alone days just with T1D and I have no idea what RA has in store for me yet, but I do promise to be honest and frank, to share the good and the bad times of my journey and to try not to swear too much!