#Spoonielife

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!

💕

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I’ve been in bed pretty much since Friday night, tending to my insanely flared up lower back and hoping I feel good enough before Monday. I need to get through two whole days before my next Physiotherapy session! TWO. FULL.DAYS.

Today’s top pain management tools :

1.Ice packs

2.Trigger ball

3.Painkillers (unfortunately, yes)

💖

Update: MRI Enterography [2]

My past experience has taught me to not give up when it comes to trying to find a diagnosis. Because when you know for yourself that your symptoms are abnormal, you have to get to the root cause of it. There was a time when I was told that I could be imagining pain, even though not a single scan came out “normal”. My joints were off position and doctors told me it “shouldn’t” hurt. I kept fighting, saw more doctors, I wanted a diagnosis. I wasn’t even expecting a solution. “Just tell me what the F*** is wrong with me goddamit” was what ran through my mind each time I saw a doctor who thought I was too young to be in pain at 19/20/21/22.

No one is ever too young to be in pain. Just saying.

All it took was ONE sensible and patient doctor (well, and a couple of non-invasive procedures that were “supposed” to fix me which worsened my condition) to sit with me hear me out, put all the scattered pieces of my medical history and scans together and we had closure. I am yet to figure out if I was more relieved about having a diagnosis or worried about my future which seemed terribly bleak. I think the first is more likely to be true.

Keeping my past experience in mind, and knowing that I am generally rather aware around my body, I don’t plan on giving up anytime soon. I’ll be patient but I will be persistent in finding a way to help myself. One big difference between then and now is that I don’t feel as if my body is holding me hostage anymore or that life must turn out a certain way, one which is more acceptable in the society we live in. These days, I believe in my own journey and trust that life will turn out perfectly as long as I have my priorities right and remember that I am on the same team as my overall health.

This entire process of trying to find a diagnosis and thus a more specific treatment is  undoubtedly uncomfortable and tiring. There are clear symptoms and I’m suffering  –  both my Ayurveda consultant and Naturopath know so very well. All this said, I can’t be more happy that the MRI Enterology came out clear – what that means is that my major organs are functioning well. After some 7 years of taking daily medications,  I’ve been worried sick about my poor liver – sometimes I wonder how it would compare next to a liver of an alcoholic. Anyway, jokes aside, clear MRI = more information. Information that just needs to be decoded further.

Next step : I’ve got a SIBO (Small Intestine Bacteria Overgrowth) test in a couple of weeks. As gross as it might sound to some of you out there, trust me, it’s not. If it sounds sick, I’d suggest you stop reading my further posts – especially if my test turns out SIBO positive and write more :) Quite a few of my symptoms are pointing towards it at the moment but hey, I don’t know yet so I’ll wait. I’m going to skip the details of SIBO for now but you might want to do a quick Google search to get an idea of what I’m referring to. Can it be healed? Yes, over a very long period of time; some 2-5 years. Treatment starts with a dose of antibiotics to eradicate the bacteria, and then continues with more natural supplements and a SIBO-friendly diet which eseentially, allows your gut to slowly heal.

I would’ve liked to be tested earlier but it turns out that the barium sulphate in my body has to be completely washed out before the test. Hence, some 14 days or so of waiting. The result should take about a week after that, which then would mean even more information and hopefully, a diagnosis, which allows my treatment to start sooner.

Alright, that’s all for now.

I hope everyone’s having a good week!

Barium sulphate had a few side effects which are still bothering me two days later – it gave me a terrible diarrhoea + really deep abdominal pain which I thought could’ve gotten me admitted + nausea + fever + weakness —  as if all the current symptoms I’m dealing with weren’t enough!

My gastroenterologist also put me on two new medications – one for the upper part of your entire digestive system (Motitlium) and one for lower (Resolor). Now, to make things more complicated, I did not respond too well to the Motitlium. One dose down and I developed a throbbing headache and had a major episode of palpitations.

Update : MRI Enterography [1]

On Tuesday, I was at the hospital  from 9:30 am all the way till about 5:00pm to get a couple of  tests done – MRI Enterography and Neck Ultrasound. I was given 45 minutes to down 3 bottles of 450ml each of barium sulphate, a slippery, kind of oily, thick but sort of translucent, dull white liquid. I thought I was doing pretty fine until after about 1.5 bottles, after which, each sip only got harder to swallow. I managed alright, I think. I’ve had worse tasting medicines before. It did seem like I was high on barium sulphate for sometime though.

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The standard procedure for MRI Enterography involves also having a contrast liquid running in your system. It highlights abnormalities and inflammation much clearly and hence is highly recommended. This time round too, like once back in the past, my experience with having a contrast running in me wasn’t exactly pleasant. They struggled to find my veins, thought my veins were too thin, and practically fought to properly insert the needle. After about three failed attempts on my left hand, they tried the same on my right and finally managed to get the contrast going.

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If I were to sum up my experience at the Radiology Department yesterday, I would say it was a total adventure, with prolonged waiting time and misleading information from every person we spoke to. They first got the timing all mixed up and expected us to reach earleir. Then a person told me I might get a diarrhoea after barium sulphate, another said nope, not at all. Another person said constrast was required and someone else said it depends on us. And, my reports, which were supposed to be ready within an hour took almost two hours to be ready instead. Total mess.

After a point, everything got really annoying and I couldn’t wait to get home. Exhaustion and pain simply got worse over the 7.5 hours of being out. I had to collect my daily medicines from another hospital nearby too. Thankfully, dad was around with me through the day.

So, it turns out that my MRI Enterography was normal, no abnormalities in my major organs – so that’s something to celebrate! However, the key question remains – if everything is normal, why am I experiencing all these abnormal sysmtoms?

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Usual answer – we don’t know yet and we must take it one step at a time. I’d be lying if I said it doesn’t get frustrating; you kind of want to know what it is but you also don’t want it to be too serious. It’s then when you realise that you don’t have much of a control, so, you take it one step at a time. One day at a time. One test/scan at a time.

To be continued…