Assalamualaykum/hello and a very belated Eid Mubarak to those who celebrated!
If this is your first visit, please check out About Me here. 🙂 if you’ve been here before, you’ll know about my battle with Inflammatory Bowel Disease, having surgery to remove my large intestine and my most recent operation so please read on..
Well, the last few weeks have certainly been… Interesting. In the way that a feeling of impending doom just before exam results are released is interesting.
Let’s start with Eid day. I’d known from the night before that I was going to struggle – anxiety was at an all-time high and I kept bursting into tears. Didn’t take a genius to work out that it was going to be a tough day. I’ve started to accept that bad days are going to be around. Let them do their thing. As long as I can enjoy the good times.
The night before, I decided I still wanted to make Eid exciting for the little ones (cousins!) so we stayed up all night making sweet cones and goody bags. Went to bed at around 5am.
Come Eid day, I was curled up in bed, crying, until the afternoon. I’d forced my mum to go to my grandparents house where everyone gathers on the day to eat and enjoy themselves. She’d wanted to stay home with me but that’s hardly fair. It took me from 9am to 6pm to talk myself into showering and leaving the house. Then I discovered that there was something wrong with the stitching on my Eid dress so it was unwearable lol. I hadn’t wanted to buy a new one but I got one to make my mum happy. She deserves that, and so much more.
So I decided to go in my favourite but not very new clothes. I did wear a sparkly pin on my scarf as it was a special occasion! I was feeling awful. Completely numb with bouts of deep sadness and in a lot of pain. As well as fatigue. A tiredness that’s seeped into my bones and every movement is exhausting.
If someone spoke to me, it went over my head. I was part of the conversation but also far away.. Nothing seemed to register. I tried to put a happy face on but I think I just looked weird. I can’t do the fake smiling thing anymore. My face feels so odd. It refuses to obey.
I got to my Gran’s at around 6pm. Everyone had eaten and they were all waiting for me. Received a great welcome from all the kids! A huge squishy hug from four little girls – squashy but I love them! They were very happy with their goody bags and sweets!
I stayed for about half an hour and then disaster.. A huge anxiety attack. I should be used to them but I’m not. Each one affects me deeply.
I started crying so I quickly walked out of the house and back home. I cried for hours. No one was home yet. I changed back into my pyjamas and went to bed.
So that’s how I spent my Eid day. Not very exciting, huh?
Oh, and they didn’t leave me any cake. This is unforgivable.
I’m trying not to feel guilty. I know it’s important to show gratitude. And happiness. Sometimes I just.. Can’t.
I can’t stop crying. There’s a heart-wrenching pain that’s settled inside me and won’t leave. It bursts open when I’m not expecting it and I feel as though I can’t cope. I remind myself of all the good things. I just can’t bring myself to be ‘normal.’ Everything hurts inside. And my body hurts too. Every bone and muscle. The anxiety makes the pain so much worse. I probably sound moany but this blog is an honest account of what I go through, what it’s like to live with chronic illness which in turn affects one’s mental health. I won’t feel true to myself if I leave these bits out.
The next day, I stayed in bed all afternoon… Again. I feel cocooned in bed. It’s Safe. If I venture out, there are people. And sounds. I don’t like either at the moment. My bed feels warm and comfortable and I don’t feel scared.
My cousin sent me a text asking me to please come to her house as they were having a little party/get together. I was very hesitant.. But I knew I wanted to make the effort.
I really couldn’t have asked for a better cousin. She’s the only one I can talk to about IBD, mental health issues, when I have a problem, when people have been awful.. I’m blessed to know her Alhamdulillah. (If you’re reading this, thank you and I love you very much 😀 ❤ )
I actually had a wonderful time! There was cake (nom nom!) and pizza. It was very relaxed which helped. I even dressed up and wore makeup! Lol that’s HUGE for me. Depression/PTSD kind of.. Eats away at me. I lose the will to do any ‘extras’ or do anything nice for myself. I don’t see the point and can’t make the effort. It’s all too much. But I did make the effort this time and I’m happy about that.
Here’s the cake we had: (we started cutting it before I’d had a chance to take a picture lol!)
Everyone came over to ours yesterday and it was great despite me being told that IBD is caused by junk food. (Yawn). Ok not yawning.. I was furious. Ranted about there being NO EVIDENCE for such a claim, that people in POOR COUNTRIES are now also being diagnosed, it’s usually GENETIC and I couldn’t tolerate salads and fruits at ALL when I still had my large intestine – some people can only tolerate processed food! Then I stormed off because I’m mature like that 😛
Here’s a comment from the Gutless Ninja Instagram account:
I’m kinda calm now. It hurts to be told that I basically brought this upon myself and it’s my own fault. I suffered a LOT and indeed many of my mental health issues stem from being told by various people that I was faking my illness. I believed them after a while and wondered if it was all in my head. I still think that at times. I ask my closest friends multiple times if I’m just imagining it all. Whether the pain, fatigue, anxiety and sadness is even real.
I stopped writing here which is quite tragic. I’ll post this then get onto the next update.
I had good reason to stop writing – my wonderful friend came to stay with her two gorgeous girls and we had a fantastic (if very tiring!) few days catching up and exploring the city. I loved it. I did far too much but it was worth it!
I’ve been doing a lot of reading since they left. It helps me forget and I’m not so sad when I read. I’m trying to be normal and do the things I’m supposed to but I find it so hard.
Today, I spent a few hours reading in the tent in the garden. It’s my Reading Tent and I love it!
I suppose I should talk about the Spectacular Mistake here. I’ve been trying not to think about it. It’s.. Painful.
I’ve been waiting weeks to see a psychiatrist and clinical psychologist. I’m not ashamed of this, or embarrassed. It is what it is. I’ve been battling a major illness and have been through two major surgeries. Of course it’s going to have an effect on my brain. I’d been looking forward to the appointment for weeks because it’s so freakin hard battling with my mind all the time, having panic attacks, feeling scared, not being happy. I wanted to start feeling ok again. It’s nothing more than going to a specialist for a physical ailment.
I jotted down the date of the appointment, Thursday the 23rd. On Wednesday, I called the clinic to ask what time I’d be seen as I couldn’t find the letter. They had no record of any appointment. After a few very worried calls, I was told that my appointment was actually the day before and I’d missed it. Missed it. I’ve been understandably upset about it. And very angry at myself. I waited around 12 weeks for this and being told that they’d now discharged me because I didn’t make the appointment was a very tough and bitter pill to swallow. I never miss appointments. I’m not sure what’s happening at the moment.. My doctor was away last week so I’m calling her tomorrow to see what’ll happen. I’m not sure how I’ll bear the waiting game again, I don’t feel I can go through it all once more. It’s sapped my strength. But I must keep fighting.
Mercifully, my friend arrived the next day and I didn’t have too much time to think about it – but I’ve now got time on my hands and I’m brilliant at worrying myself silly.
It will get better inshaAllah. I have to keep hoping. I can’t afford to slide again. I shall hold on tightly to the rope of the Almighty.
As always, do get in touch if you have comments, feedback or constructive criticism! Don’t forget to follow me on Facebook, Instagram and Twitter as I update those a lot more frequently than the blog!
The Gutless Ninja was nominated for Most Inspiring Blog Award. Please see this post for more details on how to vote. Thank you!