Attempting to eat more protein (I miss my vegetables!), that too with only limited ingredients and condiments has been such a task. I’m going fine though. What sucks big time is that I’m bedridden and so blood exhausted every minute of my day that I’m finding it hard to get my experimental self to work. If I can’t even stand, forget trying to get creative with food. At the moment, my survival mode is on. I just need enough food to get through my day, to take all my pain and daily medications + extra antibiotics and survive. Generally speaking, I’m doing fine. Doing my best.
It’s been seven days now and I’m still waiting for this back flare up to calm down. I’m mostly bedridden at the moment, getting out of bed only if it’s absolutely necessary. I haven’t gone for Pilates or even stepped out for my daily walks. I also had a pretty bad brain-fog which lasted for a couple of days.
All in all, it feels like 2017 hasn’t quite begun for me and I’m still stuck in 2016, dealing with the consequences of stepping out for a light dinner with a couple of friends on New Year’s Eve. We got stuck in a bad traffic jam the same night and ended up feeling hungry at the strike of mindnight, which then made us want to get some food by the beach before finally heading home.
I’m always putting my health first and never feel the need to be out or go crazy or involve myself in anything just because that’s normal for people. So once in a rare while, I don’t mind *celebrating an occasion, even if it involves a bit more of my physical energy and dealing with its consequences for a while. Even then – it’s usually pretty low key and I love that.
* if you’re chronically sick and your days revolve around health and constant figuring out/surviving, the more reasons you find to celebrate life in your own ways, the better it is. You don’t need to try and act normal or do it the way “normal” people do it. Just find what works for you and live your kind of normal to its best.
My treatment-diet for SIBO has finally started and I will be starting another round of antibiotics (one dose did nothing for me) next week on. The low FODMAP diet,as a treatment for SIBO, can become rather restrictive/limiting in terms of your food options (especially when you mostly make healthy choices anyway) and can end up frustrating most people on it. It requires you to plan your meals down to each ingredient. Somehow, at least at this point, I’m looking at it as yet another opportunity to further my knowledge in nutrition and to get really creative and experimental with low FODMAPs.
I can be quite disciplined and patient when it comes to my health so I’m not expecting too many issues at this point. However, I might have to include more meat in my meals and I’m not much of a meat-eater. Let’s see how that goes for me. I think I’m going to miss dark chocolate and chai the most!
I’m trying to keep my meals simply and easy to preprare so they don’t take away too much of my mental and physical energy unnecessarily. I do however want to be capable of preparing quick meals for myself as far as possible. I’ll try to share some of my creations as and when I’m able to.
That’s all for now!
I’m pretty sure that my next few days will be awesome too. I can sense that my body is tired from trying to hold itself up but I’m still quite excited about the last few days I’ve got in India.
After three years of having no holiday, a break was definitely needed. I’m glad I got some time away from my routine, to let my hair down a little and re-look at my priorities.
All that said, anything in excess is a sign of imbalance and nothing in excess has ever proven to be good for anyone. Seeking balance has helped me learn to manage this illness and I now see the scale tipping in one direction.
So, before this break (intended to be relaxing) starts to “break” me down physically, I believe it’s time for me to return and channel all my focus and energy towards things that keep me going.
After all, I’ve got a long way to go in this body.
Back to tending to my loose shoulders, inflamed neck, cramped calf, flared up back and wobbly knee caps. Good day, everyone! 💕Love to all.
You’ve got this.
Had a terrible experience at the hospital today – I had to wait for some 4 hours to complete a breath test, which required me to blow into a bag every one hour. I knew the procedure but little did I know that they won’t have a place for you to rest while you wait.
Perhaps next time I’ll have to ask in more detail, though I really thought that the full test will be carried out more professionally. I can’t be waiting around at the hospital, just sitting on a couch that looks comfortable to everyone else. When your spine is causing you pain which makes you wonder how you’re even alive (I know, doesn’t show on my face or the last few photos I posted) and you don’t get a place to just lie down, you want to cry. The thought of lying down on the floor did cross my mind a couple of times. The only reason I dumped that idea was because I would’ve had a difficult time standing right up again. If I can’t sit, walk for too long or stand much and I just need to lie down, are you seriously telling me that you don’t have a bed for me?
The only option I was given was to pay $50/hour for a bed at the A&E.
Thankfully, I am done with it and I’m back home resting in my own bed. I’m looking forward to my Physiotherapy session later – I don’t think I need anything more than that at this point in my life. The last thing I want is for today’s experience to get me bedbound again for more days to come. It’s time to rest up, recover and try to get back on my feet again by this evening. So glad that I had the energy to get through last night with my friends – couldn’t have asked for a better evening 🙏🏼✨
Lots of love,
You know you’re a spoonie when you wear your pretty little black dress to bed and feel okay about it.
Alright, jokes apart, it’s my fifth day in bed and my back is still spasming. I’m okay to lie down or stand up for a bit but I just can’t sit or walk around as yet. Yesterday’s Physiotherapy and dry needling session gave me some relief and now my muscles are tight and pretty much knotting up all over again! I’ve got a couple more days before my next session and must manage till then. Already looking forward to it.
Happy resting, my dear spoonies!
I’m at a point where by I need and don’t need food at the same time. I need food because I think it doesn’t make sense to go on an empty stomach all day and I don’t need food because I just can’t seem to get it down my throat.
For the next few days while I continue taking the supplements and some plant-based medicines that my Naturopath has put me on, I’ve been told very specifically to stay off gluten, dairy and raw salads (in fact, anything raw except green juice or coconut juice). I don’t think I’m particularly going to miss gluten and dairy much anywa. I attempted adding coconut milk in my coffee and I’m still figuring out what I think of it.
Since rice is supposed to be one of the easiest grains to digest, I’ve been told to attempt having at least a couple of spoons of porridge. Honestly, just the thought itself of putting any form of carbohydrates in my tummy is so revolting at this point. But because I do need some emergency food, I’ve made myself some steamed garlic vegetables and soft basmati rice, for when and if I feel hungry. I also managed to make a yellow moong dal which is also very light on your digestive system.
My exhaustion seems to be getting worse for some reason. I remember coming back home from my long day out after meeting my Naturopath and feeling completely drained out. Totally battery flat, feeling like I ran a marathon. Technically, running between two clinics and a pharmacy could be considered a marathon for me. I surely have to watch if this (extra) fatigue gets worse over the next few days. I won’t be surprised if all of it has to do with my loss of appetite. My gut feeling is that my gut isn’t feeling too well at all.
I wish I could say that my joints are fine while my digestive system is losing balance. Well, my right knee is swollen and poofy, probably just from walking and it hurts deep in the joint. I’ve also developed a small bruise around my right knee for absolutely no reason and the pain from it seems very deep as well. And because my right knee is not doing well, both my back and glutes are killing me. I hope I’m able to stick to my walking because the last thing anyone wants is more loss of movement while figuring out their digestive system. Where is my appetite anyway?!!??
It seems my previous blood test reflected that I am very low on Iron and Vitamin D so a Naturopath that I saw today for the first time has put me on prescribed supplements for the next couple of weeks. This includes a powdered Iron drink and a more potent form of vitamin D drops. I’ve been told that my low Iron could be adding to the brain fog and making exhaustion and fatigue from EDS even worse – possibly?
Over the next two weeks, I’ve also got to watch my unpredictable symptoms of IBS. It may all be pointing towards something more serious (or maybe not) and it’s better to have it checked. I’ve been given medication to help with severe bloating. I sometimes wish I could take some troublesome parts out of my body, send them for repair and assemble them back in place after sometime.
It’s been about 6 months now and I am always so full and have no appetite whatsoever. Yet, because my brain tells me that it makes no sense to go without food when I’m on that much medication, I force myself to eat. It’s also not as though I’m losing any weight. Instead, I’m only feeling heavy and full from very small portions. #chronicillnessissues
I’ll be going back to her in about two weeks and till then I have to follow what she’s told me to do. It’s going to be a step-wise process to figure out why my digestive system has been so wonky. It could be anything from SIBO to candida to a side-effect of taking all kinds of medication for the last 7 years. We don’t know yet. She also ordered for a blood-test to check on my thyroid, again, just to be on a safer side.
Honestly, she’s seemed like a very patient doctor and like most alternative or complementary medicine therapists/doctor, wanted to know every bit of my experience since my first major symptom back in 2009. I’m really hopeful about my treatment from her because my last visit to a Gastroenterologist left me thinking that there is no way forward without going in for a colonoscopy and gastroscopy. I wish it doesn’t get to any of it – one, because my body shows terrible side-effects to sedation and two, because I’m still in the process of figuring out my insurance and don’t want to be paying some $6,000 for these scopes just yet.
I had a really long day today and I haven’t yet fully recovered for yesterday’s brain fog.
One step at a time.
One day at a time.
Good night, all!
Ok, I can’t lie. I am tired. Freaking tired. It’s just been two days and I’ve got two weeks ahead. I want to be able to get through these two weeks well, even if there is a high possibility that my days will leave me with no energy for myself. I might need an increased dose of pain-killers too. Maybe I’d need most of my joints taped up too. I’m prepared and I have the support I need.I keep telling myself, one day at a time. One day at a time. One day at a time. There is work and Pilates and Physiotherapy and some not-so-fun paperwork and I’m on a short family vacation at dad’s because my little brother’s here. I can’t predict how the next two weeks would pan out. I can’t tell. I’m not used to such a schedule. I could do with all the spoons on this planet right now.