Tuesday 10 October 2017

It’s okay not to be okay...

Today is World Mental Health Day. 
I have struggled with anxiety since Jacob was born. It was almost instant. I had a constant worry that something was wrong with him, turns out I was right but that’s a whole other story!
Once Jacob was diagnosed, it kind of took a back seat as I focused purely on getting my son through his cancer treatment, to his next check up, to his next chemo. It was when the chemo stopped and the hospital trips became further apart that it reared its ugly head again. I became irrational, constantly thinking I was ill, or had a life threatening disease. I’d go to bed at night convinced I was going to die and not wake up. I became convinced that I wasn’t going to make Jacobs first birthday. I must have gone to the doctors 10 times in one month, with a new ache or pain that I’d make worse by constantly  prodding and poking myself. Luckily for me, I have an amazing doctor and instead of making me feel stupid and like I was wasting her time (which looking back, I was) she would send me for a test that would rule out the current disease I was convinced I had. I became obsessed with googling symptoms, and we all know how stupid that is. Except I didn’t care. I knew I had all the symptoms of this disease and some of that disease and that other pain must be that. Except most of the pains were from where I’d felt for the glands in my neck so much that my whole neck was sore. And my stomach was sore because I’d been pushing on it all evening convinced there was a lump that shouldn’t be there.
I became a nightmare to live with. I started showing Rich certain things I’d do certain ways for Jacob, or getting Jacob’s outfit for the next day out the night before in case I had a heart attack in the night and died. 
I knew in my mind that I was being completely ridiculous but I couldn’t stop it. Eventually I was referred for counselling. I wasn’t going to go. Except I did, and it was the best thing I did. The lady I saw was so lovely, and didn’t tell me what I wanted to hear like everybody else. I ended up seeing her for about six months. We got to the root of why I was behaving the way I was. A lot of what I was feeling is quite normal when you become a mother. I became obsessed with being there for my son. I couldn’t die. I couldn’t leave him behind without a mother. It wasn’t an option. I became obsessed with checking myself for this or that because I had to catch whatever disease I had early so I wouldn’t die. Ridiculous, considering my son actually was battling cancer. But a lot of it came down to Jacobs cancer being missed multiple times. If they missed that, then they could have missed this lump on me, or this unusual blood result. And in my head, if they missed that, by the time they find out what’s wrong with me, it will be too late. 
I’d also started taking medication to help with the anxiety but fell pregnant with Alba around the same time my counselling finished, so had to stop. I was absolutely fine through my pregnancy, I was more worried and anxious naturally but also, in my mind, because I was being checked so regularly, blood tests, blood pressure etc, they’d know if there was something wrong with me. After she was born, it slowly crept back in. Within days. I was convinced I had a blood clot in my leg. Then I was convinced that something had torn inside when I was in labour and they’d missed it and I had internal bleeding. Then it was the blood clot again. I had a constant pain in my left leg which I was convinced was a side effect of a brain tumour. It wasn’t, it was a trapped nerve and sciatica from carrying Alba around which some Physio and Pilates sorted right out. I went back onto medication and all was well again. To the point where I thought “I’m okay now, I don’t need these.” And after a few months, I stopped taking them. 
Last summer, I started getting awful chest pains, like someone was bear hugging me, and was so short of breath all the time.  I didn’t feel anxious. I was so busy with the children that I didn’t have time to even think about it. But when I sat down and did think abouth it, it was crushing. Jacob had relapsed, his vision had gone to shit, Alba was exceptionally hard work. I was having panic attacks. Back to my amazing doctor I went, an ECG and blood tests for various other things that I’d decided I most definitely had later, I was back on medication. And have been since. And I probably will be for the rest of my life. Because they help me be a better mother to my children. I’ve tried other routes, remedies if you will, but nothing works. So now, it’s happy pills, the gym (when I can be bothered!)  and enjoying my kids. I still have bad days. Some overwhelming, but I just tackle it head on, I cry, I scream, and then talk some sense into myself. I can’t control everything, and that is a huge part of it for me, I couldn’t control Jacob’s cancer, so I thought I could control what happens to me. But you can’t. And life is way too short for that kind of worry. I stopped enjoying my kids, I was so miserable, I didn’t want to do anything. One of my favourite sayings is “Worrying is stupid, it’s like walking around with an umbrella waiting for it to rain.” 
I know I’ve waffled, but my point is don’t bottle everything up. It doesn’t make you stronger, it catches you up in the end.  People often tell me how strong I am and how amazingly well I’ve coped with Jacobs journey as we call it. But behind the Instagram filters and the smiley face was a crumbling new Mum who really struggled to cope. 
 It’s okay not to be okay. 


x








Sunday 16 July 2017

A tonne of bricks...

"I'm going to ride a motorbike when I'm bigger!" That was it, a huge tonne of bricks dropping onto my chest. Obviously I didn't tell him that he probably wont. Unless he's a passenger. But even then, I probably wouldn't let him anyway. With "big school" becoming imminent as opposed to next year, or a few years, it's in less than two months, I have started to realise how Jacobs vision is going to start affecting his life more and more. Last night we were talking about our friends little girl who'd been to her school disco, Jacob said "I want to go to a school disco!" I said "Do you? Do you think you'll like it?" And he said "no, it will be too dark and loud. I won't like it." That's 2 heartbreaking realisations in 12 hours. No school discos, no riding a motorbike. What next? Obviously I know none of this is set in stone, and who knows what will be available to Jacob in the future, but for now, they're a no. And it isn't fair. 

Part of me cannot wait for Jacob to start big school, I know he will love it. But the anxiety I feel over him starting makes me want to keep him at home forever. Or at his preschool. Because I love them for how they've treated my baby boy and can't imagine anywhere looking after him the way they do. He got into the school I really wanted which was amazing. He has a huge Education and Healthcare Plan (EHCP) that the school, preschool and Jacobs Visual Impairment teacher put together along with Rich and Me and it covers absolutely everything from starting the day, to coat peg positions to where he will sit in the classroom. So I know they know all they need to know. And once Jacob starts, they will see his isn't what he seems on paper. On paper, I think he can be absolutely daunting. It isn't until you meet him that you realise how he doesn't actually let his sight or lack of, affect him. 

I know it's been a LONG time since I last wrote, Jacob is still stable. Our hospital appointments are 3 monthly at the moment and hopefully will only get further apart. We've had some behaviour troubles with Jacob but I think it's down to all the change going on, leaving school, starting big school. Alba is a lot more "involved" now so he absolutely tortures her and has become very protective of all of his stuff. Another tricky phase in life with two toddlers I'm sure. They have brief moments where they're the best of friends and it's absolutely lovely. But they are few and far between. We've also had chicken pox since the last post, but they both coped really well with it. Thank goodness! I will write again soon! 

A few photos from recently;