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Showing posts from 2018

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

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

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. I was going to run for Plan International 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 &

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 laparoscopy 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 bleedin

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

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. Th

It’s not Cancer.

Thank fuck for that! Honestly, worst week in terms of anxiety. I can normally hold my shit together in public but on Thursday , I needed a walk around my office block as I was so agitated. I got to the appointment & the consultant said my results were clear where cancer is concerned. My anxiety was reduced quite drastically. Turns out my theory is correct. It’s my old friend -  Hidradenitis Suppurativa  (whatever you do, do not Google images!) I say HS for short. I thought it might be draining from my armpit to my breast tissue which caused this mass to form.  I’m sad as I honestly don’t know when I’ll be back running. I don’t know when I’ll feel like myself again. I’ve had a few days to wallow, but I’ve decided that I’ve got to make plans to get back to an ok version of where I was. My immune system is totally kicking my arse. I have gone from Half Marathon ready to struggling with stairs in two weeks. This is no April Fools. It's trying to overwhelm m

My Breasts & I

I wondered what to call this blog post. I thought, my body & I but that seemed too general. You see there is this narrative about how my body is trying to ruin my life but i don't think that's what is actually happening.  Let's not deviate though, I wanted to write specifically about my breasts. When I first got them I was 7/8 (i.e same age as my son is now) I honestly hated them. I was one of the boys until they arrived and then suddenly I went from climbing trees, riding around the neighbourhood on my bike with the guys to being told not to do those things anymore. Close your legs Lucy. Sit like a lady. I was being catcalled as I walked the streets by grown men. People changed the way they behaved towards me and also tried to modify my behaviour. I hated it. I hated my breasts so I wore baggy tops and walked hunched over - literally. I wanted to disappear. So I did to boarding school. The first term I had grown from an "A" Cup to a "C" Cup r

I’m scared

im sorry for the vague blog post. This is a mind dump.  There are times when I forget until I remember. I feel like I’m in Limbo at the moment . My plans, dreams & hopes have a question mark. I’m trying to be normal & go about my routine but I’m scared shitless.   All I know is that it gets overwhelming at the moment whilst I wait. There’s this metaphorical bomb. I can feel it.  The waiting is the hardest bit. 

My Running Mantra

Over the last few months of training for my half marathon, i’ve Realised how much running depends on your mental resilience. If there is one trait that I’m 100% confident in , that would be it. There are many many things that have happened to me that I have bounced back from thanks to resilience. Now I also know on the flip side that if I let my mind win, I’m toast. Ask my personal trainer. I may have a bad run because my mind has taken me down a rabbit hole of negative self talk. I come back feeling like shit. Start to spiral, then I catch myself. This is where a good mantra comes in. Mine is simple. That’s the simple affirmation that I use all the time, not just in running but in life too. It’s true and it gets me way past my brain when it matters most. “I can do hard things.”

A Poem about Change

RED January

I did RED January and here's what I learnt:  January is a long brutal month so getting outside is a prerequisite to survive it.  It's wet & some of your usual routes may not be the best at this time of year!  Most of the time you'll have to run in the dark but you'll love it anyway - Be Safe, Be Seen!  Sometimes you get the best of the Winter Sun and everything just clicks into place. You get braver and end up going to Park Run for a strong finish, your limbs hate you but your mind loves you.  IOW MEDINA Parkrun - Photo Credit : Peter Billington I'm training for a half marathon as you know so I made it through January by Walking, Running, Pilates, Yoga & Rowing.  To wrap up, doing RED January meant that I started the year so low, lacking confidence in everything about myself. I'm talking everything. I slowly built myself up until the voices that were a roaring, wild ocean

Sitting With Your Grey

Bear with me whilst I explain what I mean. So if you know me in real life you’ll know I’m a proactive kind of woman. I like to take situations by the scruff of the neck & take control. Which would tell you that I struggle with the discipline it takes to be still. Practicing mindfulness means I have to try though. I’ve been struggling with my mood & other things this season, this has meant that I haven’t got my usual impetus to go like I usually do. I had a bit of a “Eureka!” Moment this evening sat in my therapists room. Sometimes, you can’t fix things as quickly as you want to (if at all). Sometimes you are in the season where you’ve got to listen to your inner self & sit with the uncomfortable feelings.  It’s not pleasant but the best thing to do is acknowledge it & take care of yourself. Being winter, it’s the natural time to preserve energy, recuperate & renew. So I’m taking the pressure to achieve off & putting self care at the forefront. I’m sitting