Rare Disease Day 2018

Today is a big day for us spoonies.

It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.

While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.

Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.

Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.

I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.

Keep going one day at a time!

Friends and family,

If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.

Love,

Manasi

#showyourrare #showyoucare

#rareillness #rarediseases #awareness #2018 #february28 #rarediseaseday #ehlersdanlos #ehlersdanlossyndrome #eds #hypermobility #pain #brainfog #migraine #dislocations #sublaxations #fatigue #health #mind #body #inspiration #motivation #onedayatatime #love #support #community

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What it’s like being single with a chronic illness

(What it’s like being single with a chronic illness)

Every once in a while I come across someone or the other who would ask me questions like:

“Why are you still single?!”

“Have you seen yourself?!? You can find anyone! Just go out! Go online! Why do you want to be alone? ” (that’s really beyond the point)

“How are you managing without a partner?”

“Isn’t it better to have someone around at least?”

“Don’t you get bored alone?” (I honestly don’t)

“Don’t you want someone to help you get out of bed?”

“Why don’t you just go out and see what comes to you!?”

Here’s the thing about dating and chronic illnsss – it’s not straight-forward. It’s not ONLY about feelings and love anymore. Living with pain 24/7 and dealing with an illness that’s going to be with you for the rest of your life (well, till science finds a solution or a miracle takes place) changes your perspective about pretty much everything. Every day is a new day and life is as predictably unpredictable as it can get.

What is considered rather “straight-forward” in the context of dating now involves much more complicated factors like compatibility in terms of lifestyle and practicality of the relationship. Often, these are also the topics people prefer not to discuss in detail — who wants to talk about how it is like to wake up and sleep with so much pain?

Who likes to talk about guards, slings and tapes?

Who wants to run through your pain management programme?

Who wants to know what it’s like to have to take a break during showers because of fatigue?

Who wants to discuss how to deal with an arm that sublaxes? Or what to do when your back flares up and gets you bed-ridden? Who wants to listen to your prognosis?

Who actually wants to educate themselves about someone else’s health?

Who wants to know what it’s like to make a different career choice not because you are incapable, lazy or not ambitious but because your health must be your priority? (I believe it’s a choice I’ve made for my health not because of it)

Who wants to know what it’s like to pretty much build a life all over again from scratch?

Who wants to understand what it’s like to be hopeful, grateful and practical at the same time?

Who’s willing to talk about responsibilities? Partnership? Who wants to talk about hospitals, bills, insurance and disability aid when there are so many other fun things to discuss? Right?!

Who’s willing to see what an invisible illness really looks like?

And most importantly, who’s going to be able to look past that illness, despite it being a major experience for you, and realise that it’s just one aspect of who you are?

Unfortunately, the things that people usually shy away from are exactly the things that need to be talked about. That’s the case with all of us but even more so when you’re dating someone with a body that doesn’t function as per “normal”.

From the last so many years of literally dating myself, hating my body (for a while) and now respecting it so much has taught me such valuable lessons which I wouldn’t exchange for anything. I’m very happy that I chose to give ‘me’ all the time I deserved. Somewhere I had forgotten how much I needed it.

There’s no going back for me anymore. I don’t regret choosing to date myself. I don’t regret deciding that it was time to be on my own and manage with whatever support I had and to make the best out of it. It was painful, every bit of it and yet I say this – i absolutely don’t regret experiencing loneliness and realising how amazingly freeing it actually is. It has brought me closer to who I am as a person, who I always was and has opened doors to so many opportunities.

I couldn’t quite have imagined sharing my story  with everyone and being of help to some people had I let things happen the way the old me thought they were “supposed to be”. I wouldn’t have been here feeling somewhat at peace with everything. I wouldn’t have been able to grow out of fear, trust myself and be grateful for all that I have without leaving a few things behind.

Dating myself for years altogether has only taught me patience (what’s an empowered patient without patience anyway?) and the need for acceptance of self. If I hadn’t learned to accept who I was becoming, I wouldn’t have become so clear about my wants and needs. If I hadn’t learnt to let go of the things that no longer served me, I wouldn’t have been able to embrace my new reality. I most definitely wouldn’t have been able to create space for anyone else in my life.

I couldn’t have imagined having someone else with me through the last few years. I don’t think it would have proven to be helpful for either of us. In some ways, I’m grateful that I spent those years alone, figuring so many things out all at once. Now that I have enough space to embrace who I am, I have enough space for someone else too. Keeping that in mind, no matter how sad it can sound to some people, my full-time job will always be self-care and I can’t be with someone who wouldn’t see that.

It’s really ok to be single and deal with a chronic illness AND it is ok to be sick and be in a perfectly healthy relationship. What matters ultimately is whether you get to honour your health.

Love,

MD

❤️

(What it’s like being single with a chronic illness)
Read the article on themighty.com

Day 35: Lower back MRI update (Latest)


Day 35: Lower back MRI update (Latest)
I got my MRI done last Wednesday and I have  a good news and a not-so-good news to share.

Good news – There is no new or major injury. I’m still maintaining my count at 9 affected joints (major) and my spine does not show any significant injury caused by me going out for dinner on December 31, 2016.

Not-so-good news – My spine has been degenerating over the years and there’s not much that can be done about it. I’ve got 2 disc protrusions, reduction in intervertebral disc height, disc desiccation, osteophytic bone ridging, mild scoliosis, mild foraminal steniosis, degenerative hypertrophic arthosis of facet joints, grade 1 anterolisthesis, mild nerve impingement which is worse on the left and correlates with all the symptoms I experience.

Conclusion 1 – None of the above can be considered “normal” for a 26 year old. While none of it calls for any urgent medical attention, it does call for personal attention and understanding. It also isn’t a surprise because EDS is a degenerative disorder so your body will inevitably tend to degenerate faster than the rest. The idea is to work on preserving, maintaining or trying to slow down the degeneration and avoiding other injuries.

Conclusion 2 – From my first spine MRI in June 2012 to the second in July 2015, my spine showed a number of new things to take note of. The degree of degeneration from 21 years of age to 25 was absolutely abnormal. However, July 2015 to February 2017, while there has been an increase in nerve impingement, the other main points of concern remain the same and of the same degree. This in itself is something to feel good about and I can’t help but correlate it to how my journey has been from 2009-2012-2015-2017. I can’t help but to believe that the choices I’ve made, no matter how painful, have been in the right direction. It’s extremely validating and I’d understand if no body understands. Most of it required a great deal of consistent internal work + faith in the future + action in the present + open-mindedness to try things which seemed right, all from a place of acceptance.

When you’re dealing with a connective tissue disorder, meaning that your body produces faulty collagen resulting in weaker connective tissues, it is important to note that every little issue, minor structural or musculoskeletal change and degeneration can add up and translate into immense pain and inflammation. The same symptoms might look and “feel” very different in a healthy body, resulting in a vastly different experience. Unfortunately, not all doctors are aware of how every patient experiences a disease differently as it may not necessarily fit their knowledge from medical books.  Hence, I think it becomes extremely necessary to track your personal progress, the rate at which things are changing, and the degree to which they’ve changed as part of your personal illness/disease management programme. 

Action plan-

Moving forward, I’ve got two options:

1. Go to a spine specialist and get injections in my back to help break the pain cycle. As much as these tend to help others, people with connective disorders may not respond too well to them. Coming from personal experience, I can say they did nothing for me and I don’t feel a pull towards trying them again. In fact, apart from other symptoms, the fact that my body didn’t respond “as expected” to some injections + some minimally invasive procedures was what pointed us towards the direction of my diagnosis. I also know that I’m quite sensitive to certain procedures requiring contrast or sedation and end up getting random infections.

2. Continue to give my back the time to heal, continue doing what works for me in terms of pain management (physiotherapy, ayurveda therapy, essential oils, medications, meditation, herbal supplements, respect my nap and bedtime etc.), and slowly build it back to where it was a few months back. This means that I introduce a few minutes of walking every day, a bit of hydrotherapy, then a 30 minutes of Pilates session, then a 60 minutes session and finally 120 minutes of Pilates per week as my back starts to respond. From there on, I start to re-introduce and take on more work and other activities.

Of course, I’m going with option two. Even if option two means having no answer as to WHEN exactly things would improve, it makes me feel a little more in control of the choices I make. So while there is a fair amount of uncertainty around it (which isn’t in my control), my experience over the last few years and the progress is definitely considerable enough for me to trust that I am capable of working with my body and building it up again. As I’ve said in my older posts, I don’t enjoy  needing help for things I’ve  learned to do on my own or even having to take a few steps back in terms of work again. However, if that’s what my back needs right now, I must come to terms with the present. Denial or distraction haven’t done any good for me and I’m not going in that direction anymore.

Lastly, I must say that I am so very grateful for the love, support and guidance I’ve found/ had over the last few years. It’s just been a small group of people working with me,  volunteering themselves to help, learning to accept my limitations as I learned to accept them myself, trusting me for knowing my body and needs the best, and, never failing to remind me in some way or the other that there is so much more to life and so much more to me than a life-altering chronic illness.

Love to all,

MD

Right Knee Update [1]

Thank you everyone! I truly appreciate all the love and kindness I’ve received from all of you. Thank you especially to those who called and messaged to check on me. I was in bed last night for three hours straight, icing my knee and releasing the tightness around it and just holding myself in place. I also manage to tape my knee up and put a guard on just to make sure it doesn’t shift in sleep. Got up this morning feeling super drained out, as if I ran a marathon last evening.

On a normal day, I’m already using a considerable amount of energy to hold myself up, given the nine degenerative and unstable joints I have. A small incident like last night’s requires even more out of me and my entire body. The good thing is that I am able to stand up and walk around today, albeit slower than usual and with a cane for support, but it is still manageable.

Thank goodness it’s nothing major and just seems like a slight amount of internal bruising. With EDS, it’s easy to hurt and bruise yourself as you can’t always gauge when what goes wrong. The impact does a lot more harm and you experience a significant amount of pain as compared to someone else in the same situation. As usual, one can’t always tell the effect on skin level, but turn out bodies inside out and you’ll see what a magnificent mess it can be :) Anyway, it’s a matter of a few days … lots of extra rest and care, usual pain management and being kind to my body and I will be up and about again.

Stick

IMG_2001.jpg

Might be adding another item to my #disability aid. I’ve had braces, slings, tapes and guards up till now and they’re all useful in their own unique way. Plus, they work together to keep me moving about and functioning. As much as I try not to become overly dependent on them, I also know that they’re just part of my support aid and that’s totally fine.

Lately I’ve been on my feet quite a bit and things just seem more busy in my #life (compared to last year) – I don’t think it’s the good kind of busy – it’s the “can’t help it” sort of busy, and I do hope I’m able to handle this situation (physically) as well as I imagine to (mentally). It gets really exhausting and in the last couple of weeks, I’ve had times when I seriously couldn’t get out of bed. All my #joints were in a bad state but the sharp pain right underneath both my knee caps literally made it hard for me to stand up and even walk around the house to get the things I need in order to help myself.

I guess that’s when it hit me again – and it has hit me before back in 2014 when both my knees gave in – that I might need extra #support at some point. I do usually have my knees taped up, and when I don’t, I have guards to make sure that my kneecaps are in place and I’m able to walk around. Then again, there are some days when I feel even that isn’t enough. No, it’s not just in my brain and no, I’m not planning to become overly dependent on my disability aid as such. In fact, on certain days, I choose to train my body without them and I manage okay at times. I make sure I carry it all in my bag though, you know, just in case.

Again, I wish everything was all uncomplicated and didn’t require much thinking, and as we all know, that’s not the case. Using a walking stick means using a lot more of my wrist. You see, your body has to work together, all it’s dangling joints need to team up and say, “okay! It’s our turn to look after you (a particular joint) today.” and help you manage part of your body that require the most attention. At times, it doesn’t work – it simply doesn’t. Because your entire body says, “You know what. No. Not today. Today I choose to not work. End of story. Period.” That’s when it gets the hardest to manage. It’s the hardest when the intense physical pain you experience  starts to affect your mental capacity to focus or get through the day. You get the idea?

So when I decide I probably need a walking stick, it also means I have to think trough it properly. A lot more than I like. Will my right shoulder be able to take it? Can my wobbly wrist manage the extra pressure? I’m here trying to lessen the pressure on my knee caps, but can my arms handle it? It’s a lot of decisions. You can read my previous blogpost about how you’re constantly – and I mean it – constantly,making decisions all day long if you’re living with an illness that’s chronic and causes you pain all the time. Pain lives in your body.

I’m almost certain about the walking stick, though I still have to weigh certain options out. A person from my Instagram community of spoonies recently happened to get a walking stick too (it was funny how I saw her post just when I had made a decision), and she said something like, well, if you’re going to be disabled at twenty-something, then you might as well be stylish about it. SO agree  with her! Alright, though style is least of my concern right now  (duh, it never is for anyone like us), if the walking stick is functional, provides me the needed support AND looks and feels like “me”, then I’d love that. 

Let’s see how the search for my walking stick goes. How does it feel like to “need” a walking stick at 25? Well, not great. Not the best feeling. But also, once again, as your grow with your illness, you learn to accept your needs for what they are. Even if sometimes they are like that of a little, old, grandma. That’s why, I think it’s completely OKAY to need and want anything in your life that makes your experience of living just a bit easier, if not worthwhile. If there is anything that can help to lessen the pain or at least provide extra support or stability  to your body, it’s worth it. For me, everything is based on what’s right for my health and body in the short, and long-run. I look at my decisions and actions through the lens of my body; from my body’s point of view.

Because it works the best that way.

Goodnight, all!

❤︎

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

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. 

❤︎