Tag: Syndrome

Gut feeling? 

Manasi DalviLeave a comment

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?!!??

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Jellyfish Effect

Manasi Dalvi2 Comments

 
FullSizeRender.jpgJellyfish effect :- When my entire lower body, right from the start of lower-back all the way down to my little toes, becomes numb out of weakness and there is a fairly high chance of me just collapsing on the spot because my legs can’t hold me up.

It’s something to do with the nerve, I think. Two discs and tailbone sort of out of place really can affects you in ways you can’t always predict and prepare for. What happens is that I feel some sort of an electric current somewhere right at the start of the lumbar spine, shooting all the way down into my entire lower body, down till my toes. This isn’t the same as the sharp pain that I experience in a similar manner. This electric current, as it radiates down, causes sudden weakness in the muscles and I can’t hold myself up too well. I have had to cling onto things around me and drag myself to bed quickly before it gets worse.

The numbing effect too, is not the same as the numbing whereby you don’t feel anything at all, no sensation whatsoever or no pain. I still experience #pain and if someone were to help me up, I am still able to feel everything that’s happening… But I can’t do much about it.My feet turn icy cold. I don’t have enough physical #strength to help my lower-half up in any way at all. It’s like the signals from my brain won’t go past my lumbar spine!

What happens then is that my muscles in my lower body tense up further and start to do extra work to hold me but it’s not enough. That leads to extra weakness. Which leads to the muscles fighting even harder to hold me up. That’s the vicious cycle people with connective tissue disorders fight with all the time anyway. Then, my upper body has to go way beyond its job scope  just to deal with this entire situation. Imagine having to grab hold of anything that’s around you to stop yourself from “melting” onto the floor.
It’s tiring.

Once I’m lying down, it can take anywhere from a few minutes up to a couple of hours to sort of regain the strength again. But then I still have to recover from the #fatigue of it all, which sometimes eats up my entire day. On such days, I need a lot of hot packs, #essentialoils and all things warm (like socks and a nice, fluffy duvet and oh, tea!)through the day to feel better… And by the time it’s the end of the day, I’m too drained out and my brain is dead and I just want to sleep and get up the next day and feel more like a #human than merely just a jellyfish.
Oh wait, even then. Jellyfish at least get to swim around.

This has happened a several times before (I can count on the fingers of two hands) and thankfully, each time, I’ve managed to quickly get into bed and lay flat. Of course, it’s scary to think imagine how I’d manage if it were to happen when I’m outside of home. Honestly, I don’t have an answer yet. I don’t have an answer to how I’d deal with it if I weren’t able to get to my bed in time either or if it got worse later, except to obviously call out for help. But again, I’m happy I’ve always managed to make my way to the bed and give my body the time it needed to feel strong enough.  

Good thing is, I now know what works and what doesn’t and if ever I do need help, I’m at least able to guide those around me to help me with what needs to be done. I’m aware that there may (or may never be) be a situation whereby no one but the doctors are able to help, but there is a big difference between being prepared for the possibility of it happening based on experience, wisdom or knowledge versus practically  believing it will happen based on fear and negative thoughts…

Frankly, the latter leads to too much stress and anxiety and I don’t think any of us needs that. Especially if we have enough to think about in our present.

That’s all for today.

Have a great week ahead!
💖

Goodnight!

Some Days At Work.

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Some days at work look like this. Doesn’t matter what you’re doing. When you’re body tells you to stop. STOP. When your body says lie down, DO IT. If you can’t walk to your bed, JUST LIE DOWN on the floor. Wherever you are.

Listen to your body.

Listen to what it has to tell you.

Ask what it needs out of you and do it.

Be aware of what it’s trying to remind you.

Close your eyes. Pause. Breathe. Let go. Forget. It’s all okay. It will all be okay.

Everything that must wait, can wait and will wait for you. Anything that doesn’t, is not meant for you.

❤︎

My Response To A Request : Tips For Taping Of Joints (Unstable Shoulder).

Manasi Dalvi7 Comments
A couple of days back, I received a request from a wonderful Family Nurse Practitioner in Seattle, Medea Karr (http://medeakarrfnp.com/), to share any tips or recommendations I might have about the use and application of Kinesio Tape (KT). For years now, I’ve had to make use of all kinds of guards, slings and “protective shields” for the eight (oops, no, Nine!) joints that I have to deal with and manage on a daily basis.
Medea mentioned that she has a patient who tends to have her shoulder joint move out of place while sleeping and wanted to know if taping might help. Yes! taping helps me keep my joints in place even at night. Once I put the tape on, it stays fine for about three to four days. It’s not as if it completely erases the chances of injuries during sleep (or in the day!) but it surely provides a decent level of support, as good or even better than some guards. I experience multi-directional instability in both my shoulders and trust me that I know, it can get exceedingly painful and annoying to wake up through the night because your shoulder joint is a little off. So I truly understand.
There are various methods of application, each focusing on a different set of muscles or ligaments, or for a different benefit/relief altogether. Personally, my symptoms are ever changing  and so I’ve had to experiment quite a bit before noticing the slight difference each pattern can make. I’ll be sharing some links to videos with specific patterns that have been working for me, along with a few tips to keep in mind while using the tape. I really hope this is of some help!
Please (here goes my little disclaimer), I am not certified in Kinesiology and I know from speaking with my Physiotherapists, that there is a particular art and technique behind using this tape. I would genuinely recommend you seek advice from a Therapist who is certified in Kinesiology and see what pattern would work the best for your condition and requirement. It also depends on the degree to which your joint is off, etc. If the tape isn’t applied in a particular manner, it is only as good as  some body art :)
You’ll probably find a lot of brands for the tape out in the market and naturally, some are stronger than the others in terms of tension. You might find that one brand irritates your skin lesser than the other and stuff like that. This is something you’ll have to just experiment and figure out. My personal favourite is the Rock Tape (http://www.rocktape.com/) .  A lot of athletes tend to use this brand, possibl because it seems like one of the toughest and most durable. I’ve seen for myself that the adhesive side really sticks onto my body well.
Here are the links to patterns that have been helping me with my shoulder instability, pain due to rotator cuff injuries and also with general posture improvement. I thought these videos were very informative and super easy to follow.
https://www.youtube.com/watch?v=MoWa1s56VNI
https://www.youtube.com/watch?v=OPx_cODeuTw
https://www.youtube.com/watch?v=1FPlptjGiSk
https://www.youtube.com/watch?v=GxOHLjkLzXU
Some tips to keep in mind while using the tape:
  1. Do not use the tape on any damaged, broken or sensitive areas of the body. It is recommended that you do a mini” sensitive skin test” whereby you put a small piece on a part of your body and watch if your skin has any adverse reaction to it.
  2. Once you know you’re safe and are ready to use it : Make sure you’ve cleaned the skin properly, removed any oils or lotions that may be on it. I use soap and pat dry the area before application. You could also use rubbing alcohol.
  3. Remember to always take a rough or an approximate measurement of the area you want to tape up before cutting out the pieces. That way you’re not unnecessarily wasting your tape.
  4. Make sure to snip off the sharp edges and make them rounded. Sharp edges and upturned corners  tend to stick to the clothing and causes the tape to peel off faster.
  5. Be careful not to touch the adhesive side of the tape too much while handling it. I suggest you roll open the adhesive side as you apply it over the skin instead of peeling off the sticker first.
  6. While putting on the tape, remember not to stretch the ends of it. Any sort of stretch or pull is usually in the mid section of the tape; never at the starting point or the end (the anchors). We need to leave these two points entirely un-stretched so that they’re able to hold the tape down for us. 
  7. Remember to rub the tape after application – the starting point, the ending point and along the whole structure/pattern. This is to create friction and generate heat so as to activate the adhesive. It ensures that the tape stays on for longer. 
  8. You can shower or bathe as per normal with this tape on. However, try to keep the area as free of soap as possible. For me,  if the residue from the soap sticks onto the adhesive side of the tape, I get an allergic reaction on that spot and the bumps and redness takes a very long time to subside. I have to leave that area to rest for a few days before I’m able to use tape on it again.
Other than making sure I have my shoulders taped up on the days they’re feeling loose and dangly and giving me too much issues, I make sure I create a little nest for myself every single night. I’m so sure most of us do this. I use a lot of pillows, cushions and towels when I sleep. They each have a strategic location on my bed and they work together to nest me up as I sleep through the night. I have had to train myself to sleep on my back because any other position is just too painful and seem to exert too much pressure on some of my joints. Sleeping on my back throughout the night is not the most comfortable but it is  something I’ve learnt to get used to. I make the most out of whatever soft items that I have, and in the past, it has even been my huge, fluffy teddy bear. 

❤︎

Down.

Manasi DalviLeave a comment

 One of those days when all you can do is sleep with oils and hot packs.

My sleep was terrible last night. In fact, I haven’t been sleeping too well and I assume it’s because I’m still getting used to my new place. I usually need some extra time to settle in and get used to a new space. We all do I suppose.
It took me a while to fall asleep last night and I got up far too early. 5:20am? I woke up feeling extremely cold; to a point that I was shivering and needed to wear a sweatshirt, put on my socks, switch off the AC and get myself two hot packs to hold on to. Getting out of bed was a challenge because I hadn’t slept enough and my back as tight and in pain. Nope, I didn’t get a dream and nor did I wake up feeling anything. I just woke up feeling abnormally cold.

No, I wasn’t running a fever either. I checked. My temperature was kind on the lower side instead. I don’t usually get up because it’s too cold in my room. I’d get up if it gets too hot sometimes. The AC needs servicing, so you can imagine, it really wasn’t that cold to begin with. I decided to push myself out of bed, even if I was freezing to death, and start with my day. I had to because my brain was active (tired, but active) and my body didn’t want to cooperate. I know it needed rest but staying in bed wasn’t helping.

Within an hour or so, I got back in bed again. There was no way I could’ve continued with the day. There is no way I’m going to be able to sit with my laptop or get anything done, even though my brain could handle it. It doesn’t even seem like a work-from-bed day. Today, my body needs extra care and rest and that’s what it has to get.

That’s just how it is – every day looks different, yet can feel the same.
🌷