Happy to be slowly getting back to #Pilates after two months of doing no physical activity whatsoever and allowing my back to #rest.
The latest #disc injury, on top of the existing disc bulge has been harder to manage and has me made me re-design my entire #pain #management plan all over again.
It’s not been easy at all, but it’s been yet another phase of #learning to do what’s right for my #body in this moment and #accepting it for what it is along the way.
#HMS #EDS #Hypermobility #Syndrome #personal #experience #patience #strength #slowandsteady #chronic #illness #exhaustion #mytapestory
I haven’t been posting much lately because I think I just haven’t gotten the time for myself. I had a really great time with my brother in town and now that he’s gone, it’s time to get back into routine. I’ve been doing more in general since he was around and doing anything more than what I am used to and able to do can get difficult to deal with. That was expected though, so that’s alright. I truly enjoyed having him back – we got to spend some time together and I loved that!
But I’m just SO SO SO exhausted…..
Considering that I just wasn’t getting better and could barely do what I am used to doing on a daily basis, I had a slight hunch that something might be out of place. The pain in back hasn’t been this bad in a while now and it was high time I got it checked. I got the Doctor to call for an MRI for me.
It showed that I have another bulge in one of the discs in my lower back. I’ve had an existing herniated disc at L5-S1 and now the one above it, L4-L5, is bulging out a little bit too. Due to a slight nerve impingement at that spot, I can feel the pain shooting down my left leg and sometimes it feels like the insides of my lower back is on fire.
I’m now taking an even stronger dose on painkillers (and I’m not happy about that!), which, just before this recent injury, I only took as per requirement(apart from daily nerve medication and muscle relaxants). As per requirement would sometimes mean every single day for a couple of weeks, or every few days – but at least it wasn’t every single day of the last eight months or so. Not that I wasn’t in pain or I used to feel less pain, but I was very serious about limiting the number of painkillers that I was taking and had learned to manage the pain with all kinds of therapies and remedies. And now I’m back to taking some 4-6 painkillers a day.
Over next few days, I’m going to be settling back into my place and tidying it up so that from next week on, I’m able to give my full undivided attention to my body. I’m quite sure that as I get all the rest and do what needs to be done, I’ll slowly be able to reduce the number of painkillers again and one by one, everything will start to fall in place.
This pain is surely tiring me out and I’ve decided that I’ll monitor it for a few days more before seeing the Specialist. He will probably repeat what I’ve heard so many times before (that I need to pace myself, I need to slow down in life, I need to work on changing my lifestyle, that there is no solution to this at the moment, no cure no fix, that I need to learn to manage the pain, I have to find that right balance between resting and being active, that I need to break the pain cycle, I need to strengthen my back even more, keep building on my core, continue doing physiotherapy, make sure I get enough sleep, keep taking my medicines and slowly work on reducing them etc. etc. etc.) and that’s fine, or he’ll send me for another MRI to see if the bulge in my disc has gotten worse. Either ways, it’s not a bad idea to have it checked now that it’s been almost two weeks since the day it got injured.
I think I can tolerate the pain as long as it doesn’t start to give me a brain fog (it’s a common symptom for those with HMS/EDS) – which is starting to happen now. If I were to explain what that feels like I’d say that things around you start to slow down somewhat. It’s as if your environment goes on slow motion mode. Everything around becomes draggy. Imagine a fog inside of your brain. You lose clarity, there’s a lot of confusion. Your eyes almost hurt. Sometimes you develop a bad headache (I’m getting one right now). You basically get overstimulated from the pain and get sensitive and numb to everything around you at the same time. How does that happen? Well, your brain hurts from the heat around you and it makes you almost numb to everything else. It’s as if your brain puts a ‘no entry’ sign to any kind of new information because it has reached its maximum capacity in every way possible. There are different reasons one develops a brain fog but for me personally, I either start to feel it when my physical pain has reached a particular limit or I am actually mentally overstimulated and have things to sort out.
The heat isn’t helping either and my brain feels fried from it. I spent the day in my room, with blinds down and drank a lot of coconut water. It doesn’t seem like a day for warm herbal teas at all. I applied a strong Ayurvedic balm on my forehead and took my usual nap, only to wake up feeling the same. A combination of back pain + brain fog + migraine is a complete killer. I used two use packs for my head, one under my neck and one right at the crown of my head. I’ve seen that it helps to soothe most headaches, especially migraine. I’m already taking enough pain medication so I’d like to avoid extra pills for now, and, I also realized that I’ve run out of the stronger migraine pills that were prescribed to me some two years back. I haven’t needed the stronger ones lately, so that’s a good thing anyway.
I’m going to try a cold compress later tonight (with essential oils that help with migraine) though I’ve got to see how my brain fog is comes along and if I think I can. At the moment, I feel numb to everything around me and I have no idea how I’m even typing all of this out. Okay, staring at screens surely makes things worse so I didn’t read on my iPad, neither did I work on my laptop and now it’s time I stop typing this out on my relatively tiny phone. I just took a small bite of dark chocolate (caffeine either works for you or doesn’t work for you when you’re having a headache – and for me, dark chocolates does work sometimes. But I like dark chocolate anyway, whether it helps or not) and I’m going to close my eyes for a bit again.
Peppermint oil helps with muscle spasms and aches associated with connective tissue disorders. I mix a few drops into a carrier oil (almond,olive, coconut etc),lightly massage the joint(s) and area around it, and leave it on for 15-20 minutes before taking a warm shower. It is also very refreshing and is supposed to uplift a gloomy mood – just about what I need when my back is in so much pain.
It’s been 9 days now and the pain hasn’t subsided – I’ve only been eating, sleeping and showering because I feel too tired for anything else. I managed to step out for dinner for a while and like most other times, though the food was freaking delicious, the pain made it hard to really enjoy . It’s quite impossible to distract myself from the pain (in 2012, I used to try really hard to do it and was told many times to “just forget about it” or “don’t think about it” and it never worked) so I’m trying to listen to the pain more this time so I can do what it needs out of me. I usually alternate between sitting and standing while I’m out for dinner and these days even if it may look odd and I’ve got people looking at me, I don’t get bothered like before. I have to do what I have to do and I’ve gotten comfortable with it now. I remember the time I would feel too conscious (e.g. carrying a donut shaped pillow to sit on because I couldn’t rest my butt on any surface due to my sublaxed tailbone was embarrassing then and now it doesn’t matter) about these things and now it’s different. The way I perceive pain has changed greatly over the past few years – pain can be draining, both mentally and physically, but it allows me to work with my body more and helps me understand it better each time.
Okay, I get that Peppermint oil has no direct relationship with what I just typed but that’s okay. SO, going back to Peppermint essential oil, I’ve been using it quite often on my back past couple of days and I plan to continue. It’s like one of those things that can’t possibly hurt. Goodnight!💕#backinjury #patience #peppermint #oil #therapy #strength #HMS #EDS #selfcare #day9 #mytapestory
Last Friday when I went for a walk (which started off as a slow stroll) I got a call from a friend and we got into a pretty intense discussion about how my anti-inflammatory diet was coming along. I got distracted, and ended up walking faster than my normal pace, which, is the fastest I’ve walked in a very long time. With a lot of love, patience and care, I had managed to build my back up to a point where by I was able to manage about 20-30minutes of walking per day. I had put in a lot of effort to look after the constant pain I had in my lower back because of a slipped disc and a sublaxed tailbone. I had a routine of some sort, with Pilates and Physio, and my daily walk, and frankly, I was starting to feel more in control. Walking to nearby places or a really short bus ride wouldn’t hurt my back as much.
Before last Friday, I had noticed a slight increase in pain level, though I knew it was only because my general activity level had gone up (my brother is here for a break so there’s more happening in a day) and because I wasn’t able to stick to my daily routine as per usual. That’s okay, it happens. I had expected a slight increase in pain anyway. What I did not expect was for my back to flare up to this extent because of that one walk. Those few minutes of walk where I was busy talking on the phone and less in tune with my body has caused me to be almost bedridden. The pain level is insanely high now. My muscles are in spasm and the pain is shooting down my legs. My back feels stiff and wobbly at the same time and a few steps forward make my legs weak. I don’t have enough strength to hold myself up and I’m literally limping my way around.
If I am very honest about this, I can say one thing, it’s been MONTHS since I experienced so much pain in my lower back and tailbone. It is very very sad to be in this situation, knowing the amount of time and patience it took me to build myself up to where I was last Friday. It’s a little upsetting, because it can take a very long time yet again for my back to recover, and then to slowly strengthen it. For a while, I felt stupid. I felt silly. I thought I made a big blunder. How could I do this to myself, I thought. I spent the weekend being very mean to myself, beating myself over for being careless. It took me a while to realize that it wasn’t fair; the way I was treating myself. I was only adding to my suffering, nothing else. Besides, that’s not the way I would talk to a friend who is injured, so why talk to myself like that? I didn’t make a mistake. I didn’t intentionally hurt my back. Yes, it’s very that true I have a greater control over my body and I am better in tune with the pain I feel, but I’m still human and humans make mistake. I do expect myself to be more cautious about most things I do throughout the day (that’s a lot of decisions to make in a day by the way and that means being extra alert all the time) but how can I expect myself to NEVER EVER get distracted? That’s not right. It’s hard to forget about the pain when it’s in your body 24/7 and for five years that too, but it is very possible to get distracted once in a while, like, when you’re on the phone with a close friend. I’m here now, in bed, unable to move and I have imagined the worse already – what if it takes me yet another three years to feel how I was feeling just last Friday? And that thought is not only disheartening and demotivating, it is SCARY. What if I have further injured my back and made things worse than where it started ages back? SCARY too. What if I’m not able to do things for myself again, like I was finally learning to? SCARY AS ANYTHING CAN BE. The list of ‘what ifs’ that I can come up with if I utilize my creativity to its maximum can go on if I want it to and frankly, I don’t want it to. So I’ve stopped, because again, this does nothing else but add to the suffering I’m experiencing at the moment. I’d rather tap into the strength and faith that I now have and remember that I have done this before. I can do this again.
In 2012 when I was diagnosed of HMS, I was uncertain about my future and how I’d survive…. but I did. I was scared beyond anything. Today, I’m injured and I’m in pain and I can’t walk but I’m certain I’ll heal. I’m certain that I’ll recover. I’m certain that I’ll walk again, get back to doing Pilates and continue making my way towards my dreams and goals. I’m certain that there is a future, and that’s a BIG improvement from where I was then. What is uncertain however, is, the time I’d need. But time is never certain for any of us, right? Today, I have a team of medical professionals (well, it’s a different story that my current Physiotherapist is out of town right now so I’ve been looking around for someone who I see for the time being, and this means explaining your entire medical history all over again, getting more of the same information and sometimes less of the kind of support you need at that time. It’s always a matter of trial and error, which can be tiring when you’re dealing with a back injury) will support me in this. I have a few people around who see my condition a bit better. But above anything, I have learned to accept my body enough to give it what it needs so if it needs even more love, patience and care now that it is injured, I’ll do it all over again. I will have to keep reminding myself that even if it may seem like I’m starting all over again, I’m NOT.
Things can get challenging again from here, and I’m well aware of it. However, over the past few years and especially last one year, I’ve gained more knowledge about my condition, I’ve developed more strength in myself and I am way more in tune with my body than I was when it all started. I feel more equipped with the tools I need in order to manage this injury – and that means I’m NOT starting from zero.
I have a better foundation in general – a deeper understanding of what to, and what not to do for my health and even if the pain is terrible, I try to look at it differently. I need to be kind to myself and get through this one day at a time, just like I do with any other joint. I need to remind myself now more than usual that it is OKAY to take time and slow down, or to prioritize my health over anything else. There is no rush, there is not race to win. That’s what’s needed. I can’t be harsh or punish myself for getting a little distracted. After all, I have a condition that I’m dealing with and that makes it possible for me to unintentionally overuse or over-exert my joints and muscles. So if it was anyone else in my place that got a little distracted while on phone and walking, I bet he or she wouldn’t have injured his or her back this way. I do enough for my health otherwise and I am aware and conscious of the pain I feel. I am doing enough and I need to keep trusting that I am. With the pain level being at almost a nine out of ten today, I would do anything to be able to go back to the “normal” seven that I managed to bring it down to. And if ‘anything’ means mainly rest, being nice to myself and allowing my back to heal, then that’s what is going to happen. If ‘anything’ means choosing what I feel is right for me, then that is what is needed.