Tuesday, 18 June 2013

Scrapping what I said before...

At the beginning of June I had every intention of doing Kairen's blog challenge through June. However, due to the decline in my Osteo/Rheumatoid Arthritis I have had to focus on things I can do. A few days ago I woke up and was totally unable to walk. This scared me. I was used to waking up unsure if I could walk for a few minutes till I could get going but not how it's been since.

I use crutches all the time now, even round the house. I use different aids in the home and each day there is less and less I can do for myself. Needless to say I have been reduced to tears and frustration more than any other time in my life. The upside though, I finally have the Rheumatologists report and I have a phone consultation with my GP tomorrow to discuss his route for medical care and medication. The Rheumatologist was fantastic. I had the full check over, that day though I didn't have flare ups in my hands, feet or left leg so he's only ordered a MRI on my right leg for now but he's put a provision in for a secondary one if and when needed. Within 48 hours of that appointment I had the occupational therapist, physiotherapist, dietician and adult social services lining up to see how they can help me. I was rather shocked at the speed of things.

The biggest thing I need right now is medication. To date I could only take strong, high dosage pain killers and Naproxen (anti inflammatory) so now I am hoping I can get the drugs that are specific to the condition and length of time I've had this. (Its been confirmed I've had Osteoarthritis for over 6 years and Rheumatoid for over 12 years, which explains a lot, especially the fatigue I had from time to time that no one could explain!) I know the medication will be trial and error till one is found that works for me, then there's the side effects, I'm prepared for all that, in fact, compared to how it's been the last 4 months the price is welcome and worth it.

Sometimes too much information isn't a good thing, but I like the information, I like to know what I'm up against and find ways that I can help myself. I've not yet learnt how to admit defeat!

My car died a few weeks ago as I was on the way to take Kirsten to her nans and to see my dad. We'd done about 10 miles up the motorway when one awful grinding noise appeared, some smoke and a bang. The engine blew up! My poor kids were besides themselves wondering what was happening. Turns out the garage sold me a car that should not have passed it's MOT so thats another battle I'm working on right now with them and VOSA. The good news though is I pick up another car this weekend and this will be the difference of not going out for days (it's been 2 weeks so far) on end and being able to get my son from school. Right now I am relying on Kirsten, my neighbours and my awesome other half to do the school run. While Charley loves being with Paul and vice versa, I miss doing the mom thing, I want it back, I'm not ready or willing to give it up without a fight!

When you are suddenly disabled it's another world. The insights I'm getting are not only scary but humbling. Until yesterday I had plodded on in my own little world doing the best I could to just try and keep normality for my kids, then I found a blog for a fellow sufferer and she lead me to a Facebook group that has been hugely eye opening for me. For the first time I am able to say how I feel without ending with a joke or adding the extra 'but it'll be ok' at the end, almost like I'm taking back the difficulties I'm facing. The only one I have really been able to be open with is Paul, he doesn't try to fix it or make it what it isn't, he doesn't make light of it or over do things, he just looks for the signs of me reaching my limit and takes over. He's quickly learned to not stop me! He's a real gem and I'm blessed he's all mine!! ;)

So while blogging may not happen much, it may become more and more about arthritis/my experiences etc with some homemaking stuff thrown in, but I doubt there'll be any regularity anytime soon, my days and nights are just so unpredictable. I'm grateful that I have a cleaner in twice a week, a neighbour who will cut my grass and unlimited ice latte's {sorry to my Lds friends that are shocked by that, it's either that or the whiskey right now!! lol} so for all the things that aren't working, I am learning to do the things that do and delegate those that I just cant do.

If you are a fellow Arthritis suffer, share with me, I'd love to chat to others who are dealing with this condition, even if you're having a bad day....

Post a Comment