Feeling totally inspired by a few bloggers I found recently, this post, in particular, being inspired by Too Cute For Life’s April Goals Post. I’ve decided to start sharing my goals and getting serious about tasks I really need/ want to get done. Judging by others […]
Living life with a chronic condition often means being forced to have rest days, even a pro’s at spoon management have random pain days that will only worsen if you push through. I’m the worst at pushing myself too far, trying to get as much […]
No one tells’s you how lonely becoming a parent is going to be, sure you have your new partner in crime by your side 24/7 but they spend the best part of a year doing not much but pooping, sleeping or eating. Friends you had […]
I felt mum guilt pretty much the minute I found out I was pregnant with Logan, we all wonder what kind of life we can provide our children but throwing my chronic condition into the mix made things ten times worse. After 2 and half years of being able to do very little, simultaneously I knew I deserved to have a life just as much as anyone else and beat myself up for knowing I probably wouldn’t be able to give my child the life they deserved.
After that my first major pang of guilt was when I decided to switch Logan to formula after 4 failed weeks at breast feeding. It was horrible, I suddenly felt like the worse mum in the world for not providing my child with the best option necessary. I spent weeks beating myself up about it until I realised that all this worrying meant I was concentrating even less on Logan’s needs. My poor health made my new mummy role difficult enough without choosing to add sleepless nights, a constant 2-hour cycle of attempting to pump, breastfeeding and trying to escape exhaustion left me an absolute mess. I suddenly realised it was actually better for my mental health and Logan’s general health if I just let go and things got much easier.
Recently I’ve has a lot of mum guilt over (funny enough) food, Logan has been weening for nearly 2 months now and is doing great but most of meals are pre-made baby food jars and I can’t help but beat myself up a little bit. It feels like the easy option which I know it totally OK but mummy instincts say he should be having fresh, homemade food and not the pre-made. (god knows what’s actually in the jars) When Logan was tiny, way before I needed to think about weaning, I attended a baby group that discussed weaning and swore to myself he’s be having fresh, he could eat whatever we eat.
When weaning became a reality I turned to the jars for help, for the ease of meals, the speed and nutrition. They probably aren’t the best but from one spoonie mummy to every other mummy don’t beat yourself up for needing a bit of help with meals. I choose using jars and having more energy to spend do other things with my son over spending probably about hours preparing food for him he might not even like. When reality sets in and I realistically don’t get to sit down and eat my dinner until after everyone else, “giving them whatever you eat” isn’t always possible. Although I still beat myself up sometimes, I’ve resided with the idea that anything that makes my life easier, that allows me more energy to spend playing with and teaching my son is fine by me.
Its pretty late for a 2015 review, truth is I’ve had this written for a while. Not can’t sure why I didn’t post it earlier. 2016 has already given so much that I’m just not ready to share yet, but they certainly make up for rubbish 2015 I had, see I’d spent most of last year chasing my tail with my condition. Tried all the meds possible the second time around and still had no luck. 2015 was probably the most frustrating year of my life so far, but it’s also taught me some of the toughest and most helpful lessons. I wanted to share my lessons learnt from my IIH in the hopes that it might someone that is struggling. LIFE is hard, life with a chronic condition is harder.
Lessons Learnt From IIH
Lesson 1: It is not selfish to put yourself first
I’d spent most of my life looking after those around me growing up, a need to feel like I was doing the right thing meant I’d put many others before myself and get frustrated when the help was not returned. In 2015 I learnt to put myself first, and know that it was OKAY. It was a frustrating lesson to learn, with 2015 being the worst year for health in family all I wanted to do was care for everyone like I was used to. I endured frustration and near anxiety attacks but I got through it and I realised that I wasn’t able to help ANYONE if I didn’t just rest up and get myself better.
Lesson 2: My life isn’t over because it didn’t go to plan
After losing my job I was devistated. I’d worked my absolute ass off and climb every mountain that life through in my way to make it through college and university to make sure I’d be able to have a job that both paid well and most importantly…that I’d enjoy. I grew up watching my mum do jobs she hated just to get by and refused to do the same. So I made it through, I got the job of my dreams, the started of my career…and then became to ill to work. It took a while for me to re-build my confidence and a new home where I could continue to work at my own pace but before to long I started this blog, finding my purpose in writing, sharing my experiences and hopefully helping people. My life wasn’t over. My hard work hadn’t gone to waste, life just had a different plan for my skills.
Lesson 3: Live in the moment and remember each moment passes
When I think back to 2015, I realise I spent way to much time questioning everything. My life, my future, the love my partner had for me and most importantly WHY ME? Only to realise it was a waste of time, questioning and worrying and pushing away the people I loved because these questions always caused me to come up with only the worse possible answers. Of course these questions were all completely normal. My life had been turned upside down and as a process of mourning for the life I knew I could no longer have, these questions were a natural part of the process even if they were a complete waste of time. I would spend so long getting wrapped in my thoughts I’d lose out on precious time I could have been spending with loved ones. Now even on the worst days, I accept that today is shit. It hurts. But there isn’t anything I can do but rest. Don’t get me wrong I still get frustrated but I spend maybe a couple of hours sucked into the the pain, rather than the weeks I spent in that helpless black pit.
Lesson 4:The fact that i don’t fit into society “norms” is OK
I still hate days when we have no money, my partner is working relentlessly and comes home exhausted when all i’ve been able to do sit at the PC for a while before my eyes got tired, then take a nap because the pain is unbearable and exhausting. I feel useless for not being able to work and had anxiety over telling anyone that I had be on benefits because I was to ill to work. Feeling like I had explain myself to everyone because I “look” okay and my condition is practically invisible if I want it to be. Eventually I realised that there’s really nothing I can do. I didnt CHOOSE not to work, hell if it was down to me I’d work 24/7 but it’s not up to me, I don’t get to choose what my body allows me to do so why do I feel guilty for something I can’t control?
Lesson 5: I became ill so That I could Learn These Lessons
When I received my diagnosis the first things I thought was I can’t handle another life test. Life had thrown so many at me already had I had scarcely made through, I didn’t know If I could handle another one. Why me, when life’s far has thrown so much shit at and all I have done leap every hurdle that it feels I need another one? I was tired of fighting now. I spent so many months, and on bad days sometimes still do question…why me? What have done to deserve this pain. Until slowly, i gained strength through the pain. I kicked and punched life and found so many incredible people to surround myself with that after a while I began to become thankful for what I had. I don’t thank the pain, I’d still love to be rid of it but if I hadn’t become ill. I would have missed out on 2 massive worlds of incredible and inspiring people. The first being Twitter and the huge #spooniefamily, the second being my amazing Periscope family that have always been so happy to see and hear from me. The amazing new friends I have met because of it.
No one ever plans get diagnosed with a lifelong incurable chronic condition at the age of 21. No. My plan was to grow up, go to school, college and uni. Get a career doing something in IT – I hadn’t had time to narrowed down specifics yet […]