Skip to main content

Posts

Dear Dr, My Pain Matters.

How I know if someone has really crossed a boundary is if I just can’t stop seething about it. Unfortunately, in this case, I’m reminded every time I try and open our stupid door knobs , when I pick up something and it takes forever, when I can’t sleep because every joint hurts, when I wake up and I just know it’s a high pain day. When I dread getting in the car because I know it’s going to be painful. When I struggle to weed vinyl for orders  in my shop Etc etc. 
When someone who doesn’t know what it’s like to be in this body decides that they know better, I get really angry. Just because you can’t see it doesn’t mean it isn’t hard. I’m trying so hard to live my life the way I’d like it to be, trying so my boys don’t miss out to much. I’m doing my best to not let this condition snuff out all the colour in my life. I’m not going to lie, some days are harder than others. 
I just maybe expect a bit more empathy from specialists. 
Is that too much to expect?
I had a weird appointment last we…

Realities of Living with Autoimmune Illnesses

An obvious one is my lack of consistency in updating this blog. Since the last time I wrote here, I’ve had 2 flare ups of  2 out of 3 of my conditions, dealt with the madness of the end of the school year ( I’m on the PTA so there’s additional issues on that) , done numerous Summer Stalls for my craft business, House hunted, Moved house & kept 2 sproglets alive all while working my job. Let’s not even go to the emotional fall out that this time of year brings for me.

All this to say, I’m soooooooo tired. Like all the time. I don’t know how I do stuff half the time. Today though, I’m feeling extra guilty about my life. I struggle through the day and end up giving the left overs to my kids and I swore I would NEVER do that to them. I was telling my sister how I was feeling and she was kind enough to tell me I’m nothing like the people I am trying to avoid replicating. The intention is different and I agree with her. It’s not that I can & I choose not to but because I’m simply o…

Got An Answer: My Rheumatoid Diagnosis

Back in the spring when I started having what I can only describe as the worst pain ever, I didn't know how things would pan out for me. I've been through some really dark times (even for me .. *titter* ) I went from full pelt Half Marathon Training (my last run being just over 10 miles) to hobbling out of bed and struggling with the stairs.



The worst thing for me was aside from my obviously painful swollen ankles, I looked the same. It didn't seem like my whole body was on fire. The crippling fatigue & worst still the shroud of hopelessness that engulfed me.

I didn't miss one day of work even though some days i'd rather be knocked out than endure one second of the day. I still did the parent thing. The partner thing. The business owner thing.
I now know better because yet again, I pushed through and would end up crashing at weekends.

It all started with a mass in my breast. I wrote about it here & explored more here.

 To catch up, read the posts between t…

Managing Gynaecological Pain - A Guide (My Mirena Story)

Back in November 2017, I wrote about how I was on a quest to cure me of this hell I was living. The Crippling pain, Heavy bleeding & the low moods had made my life hell for decades. I wrote about how scared I was about undergoing a general anaesthetic . I neglected to write about how that felt so I will soon including the healing process. I will update this post once I do that.

Anyway I had a laproscopy where my surgeon was able to cut away the "longest adhesions he's ever seen" and he also inserted a Mirena IUD to see if that helped my symptoms. He had a look into my womb and he didn't find any endometriosis.

The Mirena was not the right solution for me. I bled everyday from November to March. I had other side effects too not to mention my body effectively crashing at the end of March. When I had my follow up with the gynaecologist, He agreed it wasn't working although my periods were lighter, there was no point if I got no break from the bleeding. He has of…

Prednisolone, My Old Friend.

I saw the Rheumatologist today and as I suspected, She's prescribed me a course of Prednisolone. For those of you not acquainted with this medication, it's a steroid given to suppress your immune system. It's often given when someone is flaring up. It's very good at its job but man the side effects (for me) are shit scary.

I used this when I got Bell's Palsy in 2009. I'll tell you the story around that incident another day but I had half my face paralysed and that medication helped me get better for sure. I was a total She-hulk though. When I wasn't being ragey, I was crying at the drop of a hat and eating everything in sight.


Back to present day and I'm terrified to take it but I also know, it's the key to coming out of this current flare cycle I'm stuck in. My body could do with the "break".

So here I go Day 1 of 56.

Please be patient with me.

How the eff is this my life? - Moving Forward After a Hard Knock.

Do you ever have those days when all you can say is “how the fuck is this my life?”
Sometimes said in a Wow! I’m killing it but mostly said in bewilderment. I try and be present and aware of  what’s happening around me & within me, however I’m also guilty of zoning out and getting through my days in a perpetual daze. Occasionally you look up and you are stunned at what your life has become.



When this happens, you may be anxious or feel helpless about where you’ve ended up. Either through your own choices or the cards you’ve been dealt. I just wanted to write today, it’s never too late to make changes in order to achieve the life you want.

I’ve been saying that phrase lately but I know that life changes and we’ve got to adapt the best way we know how. So for me, I know with my new diagnosis, I can’t take on as much like I used to.
I need to give myself wiggle room in my schedule. I have to be kind to myself and say no to things I really want to do so I can function better. I need …

Yay for Yin Yoga

Since that weekend where my life seemed to pause, and I realised that though the BC Scare was over, I had yet more battles to fight, I have been struggling physically (to be fair emotionally too).

I am now hubbling instead of running or walking, getting in and out of the bath not to talk of the 24/7 pain . I’ve had bloods done & have been put on starter meds. My joints are very painful & swollen. My immune system is very angry.



Yet coping with the everyday has been very tricky. I still have a very busy life to lead & responsibilities to carry.

However, I started doing some morning salutations just to get me going and today I went to my usual 2 hr class and my teacher was amazing at checking if the poses felt ok. If they didn’t, she offered me props to help and if they didn’t , she gave me an alternative.






I was so happy that I was doing it! Afterwards, I stopped at the beach (my happy place) just so my swollen painful joints could bathe in the sea. The tide was out but I f…