We are aiming for low activity with the disease

20130627-164043.jpg

Today is one of those days where I really struggle with my disease. My amazing nan used to give me a big huggle buggle on days like this and say to me “it’s alright love, it will be alright”. I really miss her gentle tap on my back and the soothing sound of her voice saying “there, there as the tears roll down my cheeks”

I miss her today – she was always there when I came home from a hard day at the hospital. We would make a cuppa and I would raid her lollie jar then we would yabble yabble about the appointment or in today’s case the appointments until all the tears had gone and I had “my ducks in a row” and felt ready to face the world again. She always helped me come up with my answers and let me do it in my own unique way.

RA is a crippling and nasty disease and for the first time probably ever I am publicly sharing the enormity of how I feel on days like this. It is a constant battle and balancing act for me, Riwai and all those around me, it’s ups and downs so overwhelming at times. The words “you have had amazing results before and we will look at every possible angle to get you back on track” are little comfort on days like this, the reality setting in that we are running out of options and those options available come with their own list of debilitating side effects. This is serious stuff…. A crippling disease with no cure, no rhyme or reason and no real definitive pattern to plan for. The mind plays all sorts of tricks and the chatter constantly ringing in my head and filling with whys and how comes. I miss my own exercise and am constantly reminded of what I wish I could do – of course that is my own fault no one forced me to work in the wellness and fitness industry. My morale bones could see a gap and knew someone had to make a change and help thousands like me. Some days though i get super frustrated. Still i really dobmiss doing my own exercise . I would love to have a me to train me and run around a netball court one last time… Even run around the block pain free sounds so appealing.

I get so over having no taste or appetite, feeling lethargic all day and wide awake all night. Giving myself an enormously hard time because my rational mind knows I have done incredibly well and all little steps i take do make it ok. i swing from feeling blessed to be building an incredible business based on my adversity… and deep down I knowing it will be ok – to moments like today I am impatient and …..

This 30 secs I am over it!!! This 30 seconds i want to jump up and down and say its unfair! I am sick of hobbling, sick of strangers telling me I shouldn’t be in that disability park, sick of getting up an hour earlier than I should so i can get this old body moving and functioning as I want it too. I don’t want another health professional to tell me how incredibly amazed they are at how I have held the progression. Over joints swelling and aching, my ears aching from my TJD joint being inflamed. Sick of dropping things, restless legs and having to get Riwai to help me with so many simple daily tasks. i would love to pick something i like off a menu instead of chosing what I can cut myself without worrying. And seriously Idon’t need another stranger on the end of the healthline phone line telling me just take a couple of paracetamol. If i am ringing it is because I am in aworld of pain and probably tried all the “scripted” answers….. Yes rest is good but really I need to know which opiate in this array in the shoebox I front of me is best for sleeping and which is better for day time. Yes I am well aware that my CrP is good, ESR good, chest xray clear, so the steroids, dmards, painkillers, anti -inflammatories are all working…. Yes maybe they are masking my symptoms.. Thank your for the creams and more pills for all the allergies, spacer for my inhalers and I totally get the lack of strength and muscle wasting is normal. Thank you for the millionth time – i know I am doing great!

Why aren’t you taking some of “that” more regularly – oh because the box didn’t tell me I could. Yes definitely take this was that and stop that with this….and then try that… But if you feel worse in the morning you should see your GP.

Wow that’s a low peak flow – but you are taking your inhalers and you are on steroids??? Really ok your Pulse good, BP perfect. This is a complex auto immune disease Cate and I would say that your immune system is shot…..

REALLY!! You don’t say!!!!

So all in all that’s my 30 seconds of frustration blurted out…. I feel much better and forever hopeful that today’s appointments will lead me back to the track I want…. One thing is for sure if I stay on this negative track before too long I will hit the end of the track and a big brick wall which will be harder to comeback from. So thats the rare and wee scenic negative detour over and that was all I needed to remind me what Thomas (the tank engine) would say…

I think I can, I think I can- wahoo!!!

Cx