Tuesday was already going pretty slow because of gastric cramps, and later in the day, my left shoulder started feeling really unstable. It got too loose again. All the muscles around the joint had tightened up in order to hold it up in place. I think I first noticed this when I went to collect medicines for gastric, but I had no clue that it would flare up this way!
I didn’t get a good sleep last night. Slightest movement in sleep and I’d wake up because of pain. I did what I usually do to calm it down….I used a really strong ointment on it, gave it a light massage, used hot bags… and somehow got through the night. I went for an extra Physiotherapy session this morning because there was no way I could’ve gotten through this week with such intense pain in my left shoulder and arm.
The left side of my neck was more bumpy than usual, which is a sign that something is a little more serious. I can always feel these bumps in my neck, they’re just always in there, but they swell up right away when something goes a little off in terms or my joints or when I’m really sick.
My Physiotherapist spent one entire hour on my left arm. Everything was so tight! She needed to release all the tensed muscles slowly. IT WAS SO PAINFUL. It seems that the instability of my shoulder is causing my rotator cuff muscles and postural muscles to spasm and guard. This causes pain, stiffness and intolerance to movement to both shoulder and neck. Myofascial adhesions build up and reduce mobility and power of the muscles. These adhesions sort of look like I built biceps overnight. Horribly painful biceps though. I don’t think anyone wants such biceps.
I’ve been told to do scapula protraction exercise over this week, but only if I feel that it’s not causing me more pain. I’m also going to need a sling for the next week or so. It’s time yet again for my right shoulder to take over and my left to rest.
What caused my left shoulder to suddenly become more unstable? I don’t know. All I know is that this is a part and parcel of living with Hypermobility Syndrome so it doesn’t make me feel as bad anymore. I just have to take each day as it comes because each day brings something new and no two days look entirely the same.
Monday! This week started off well – I got back to eating right, went for Pilates and also managed to walk again! My mind kind of felt fresh; like it was ready to take on whatever came next.
Guess what came next.
Tuesday. I got up on Tuesday with really acute gastric cramps. It was sort of on and off over the weekend and since this happens to me quite a bit, I’ve got all the required medication at home. This time it didn’t help much. I’d feel better for a bit and the abdominal pain would come right back. I had to see my Family Doctor once again to get something stronger. I’ve been prescribed Esomeprazole, which is specifically meant for gastric acid suppression and, Buscopan for abdominal pain or cramps. Along with that I’m taking Axcel Eviline Forte suspension, which is an inorganic salt (Aluminium Hydroxide) used as an antacid. It helps to neutralize Hydrochloric acid in gastric secretions.
Gastric pain, acid reflux, and other Gastrointestinal issues are some of the secondary symptoms (i.e. those symptoms not directly associated with joint pain) of HMS. It took me a while to understand why HMS is considered a ‘multi-systematic disorder’, but now that I do, all the other symptoms that I deal with seem to make a lot more sense. It all boils down to the collagen defect in people with HMS!
Over last weekend I also developed a sore throat. The same had happened during my previous gastric attack and I was told that there is always a slight possibility that the acid reflux causes throat irritation or inflammation, which can feel as if one is about to fall sick. I’m waiting to see if my throat gets better as my stomach starts to feel better.
On days I have gastric pains, I spend a lot more time at home, drink more camomile tea, put lots
of strong balm on my stomach and a hot pack over it, and try to sleep more. Camomile tea works as an anti-inflammatory and helps to relax the stomach muscles if the lining of the stomach has become inflamed. Combination of a strong balm + heat from a hot bag always helps relieve the severity of pain for me. I manage to get some sleep this way too. There’s not much I’m able to do with gastric pain that severe except be at home till the pain reduces. This is the time I eat super bland food and go completely off any sort of caffeine and dairy.
A few other home remedies that I read can help with gastric pain and which I’ll probably try next time are:
1. Drinking rice water (the water leftover after you cook rice)
2. Peppermint tea (helps with indigestion)
3. Ginger-root tea (helps with nausea and relieving stomach muscles)
It’s my second day in bed because of gastric pain. I think it’ll be okay by tomorrow or so. Till then, more camomile tea and rest!
I still haven’t recovered physically from that super fast walk on April 11. My knees and lower back still hurt and I’m not managing to keep up with my daily walk at all. I’ve needed extra painkillers again.
No Pilates for the past 2 weeks, after managing pretty well through March.
No pool. This sucks.
I’ve been exhausted out of my mind. My brain has had a pattern – process, process, process SHUT DOWN, process SHUT DOWN, SHUT DOWN, process, process SHUT DOWN, process, process, process, process, SHUT DOWN… [for the past 15 days or so]. Tiring.
Why did everything have to happen at the same time! All kinds of emotions at once? Really? Tiring.
I’ve had an icky diet! Sick diet! Eww. Other than lots of mental processing, I ate all kinds of food that I usually don’t eat. No, NO. That doesn’t mean I follow some sort of a fad diet to not put on weight and NO I don’t starve myself (I’ve come across far too many people in the past who believed that HMS happened to me because I didn’t eat enough!), I eat enough for my body and I can’t live without dark chocolates. I have a sensitive stomach, which I have to look after AND I am experimenting with some anti-inflammatory foods. So when I say I had an icky diet, all I mean is that I didn’t eat like I generally would. I ate too much for my body to handle. I didn’t feel like cooking at home and it’s not as if I ate “right” outside.
My sleep has been especially messy. I’ve been waking up every hour or so, feeling terribly warm at night and sweating at 18 degrees. I’ve been getting up way too early, even before the birds….
And then spending rest of the day in more pain. Tiring.
And now onto the positive things that came out of this month:
I feel much better that I sorted some things out over April. It was time. Things could have been a lot worse, but I handled them pretty well. I remained true to my needs, trusted my decisions and I did what I’ve been wanting to for sometime now. It’s always challenging to deal with ultra-sensitive topics! I feel so relieved now.
I feel much lighter now; after experiencing some heavy emotions. Good thing I didn’t distract myself too much from all that!
I got some practice with saying NO. A couple of incidents took place which made me realize that it has become especially important for me to say a clear NO and mean it.
I was presented with an opportunity to look at my entire journey (like watching a movie about my life), since the day I was born till today, and see for myself that I really have come a long way. A really long way…
While my mind was doing it’s own thing, a part of my heart opened up a bit. I came across new people, new perspectives and new ideas..
I received beautiful compliments for my blog. It was encouraging to hear good things about it from friends and strangers! People want to read more.
My Patient Story was finally published on Global Genes!
I sold one of my patterns! YES! I work on these patterns whenever I’m able to. I take custom orders depending on how much I can really manage.
I threw away some more old stuff to make space for the new. It turned into a major highlight for this week.
I got a chance to take things at my own pace. Without any sort of rush, without anyone pushing me to “feel better quickly” or to “be okay already”. I got my time to cry if I wanted to, laugh if I felt like, stare at the ceiling, sit and breathe, write, draw, stay in bed through the day with hot packs…..and just give myself the space and freedom to experience whatever I needed to in order for things to slowly fall back into place. There was a time this wasn’t possible at all and I’m so grateful that it’s possible now.
I think I’m ready to put everything back in place now :)
Wow, looking at my list of good things.. I don’t think I want to even complain anymore. Just because April brought up some negative stuff and ruined my routine doesn’t actually mean it was THAT bad. Yes, it messed with my feelings and caused my body a lot more pain, but it propelled me forward along with all of that.
Alright April, you haven’t been that mean to me. Thank you.
I wrote in my personal story for Global Genes sometime early March. I just received an email saying that it has finally been published! I understand it can sound a little bit repetitive for those who’ve really followed through the story of my diagnosis. In that case, here’s a summary of it anyway. Hahaha.
OKAY. I still don’t feel all that well. I still feel mentally drained out.
You know how it is like when you have exams? The actual exam period obviously gets very stressful, but once you’re done with your final paper, you still take a few days to recover from the exhaustion you experienced during and before exams.
I’ve been feeling like that somewhat. The post-exam fatigue.
I stayed up quite a bit last two weeks because my body was in a lot of pain AND because my brain had lots of things to sort out. A few things happened last week that completely zapped my energy away. I mean, dealing with pain in the body is one thing and when coupled with something emotionally or mentally triggering, I’m just left too charged up for anything else. It then takes me about a week after that to really regain all the energy and finally come back to my routine. My body requires EVEN more care and patience when I feel this way. But it’s during these times that my attention also shifts to my mind and heart. I tend to give more importance to how I think, how I feel.. my thoughts and my emotions, and not just the physical pain that I experience.
It’s these times when I see what it is like to really be human. Experiencing physical pain makes me feel alive enough I think, but to experience all kinds of emotions and thoughts together with that is a different story altogether. That’s being human, that’s being more alive than ever. I don’t hide away from these things now. I think it requires some amount of courage to look straight at your thoughts and emotions and to figure them out, one by one, with patience and care. Just like my body needs my time, my mind and heart need my time as well. I’ve taken a while to understand this.
I gave myself this week to recover, to work through things slowly, without any kind of rush. Clearly, I’m not there yet. It’s Thursday already, but I require more rest. So even if I take a few more days to start feeling normal, that’s okay. I’ve been totally off routine this week – I haven’t been able to go for Pilates, go into the pool as much or even walk like usual. Things are sort or and sort of not going according to my goals for this week. My main goal this week was to recover, which is happening slowly. But everything else.. not really.
It is also during such times that I have to be honest with people around me and tell them I’m not in a state to deal with anything new. If I need to, I make sure to tell people that I’ll catch up with them when I’m better. I simply can’t take in more information from anyone else when I have so much to sort out internally for myself. Since young I’ve had a tendency to listen to other people’s problems and to help them out – but these days I need to put myself before anyone else.
I’ve noticed what helps me feel better (other than sitting with myself) during such times is talking to complete strangers about something totally unrelated and light, or spending time with people who know that I take my time through things. I have my own way of processing thoughts and emotions, and I don’t appreciate being rushed through this. For a moment I may feel like dancing on “Desi Look” or “Chittiyan Kalaiyan”, and the next moment, I may want to run to my room to calm myself down or cry my heart out. Having this sort of a freedom is so important to me now!
There is a general pattern to how I function and I’m okay with it – I feel like crap, I let myself feel like crap, I work myself out of the crap and I don’t feel like crap anymore :) So right now I’m some where between working myself out of the crap and not feeling like crap.
I allow myself feel what I need to feel, I look at my thoughts and keep the healthy ones, and then I slowly bring my focus back to present, back to where I am and where I’m headed. Sometimes this takes longer than usual. But so what?
Last Saturday I went for a longer walk as planned. It was one of my weekly goals! I had thought I’d cover a greater distance at a slower than normal speed but what happened was that I covered a greater distance at a much much faster speed. As far as I remember, and according to RunKeeper, this was the fastest I’ve walked in the past one-and-half years! The last I walked so fast was before my knees were affected (December 2013!). Now that is crazy. I know, it sounds as if it’s such good news, but I really don’t think it is.
Of course I feel happy that I was able to do it, but the consequences are not worth it at all. Since that day, I haven’t been able to even walk my usual distance, at my usual speed or do Pilates. And this is all because I got completely carried away on Saturday… walking at 8.5minutes per Km. Okay, those who run, you’re allowed to laugh. But this is my fastest now. Can’t help it.
I think I started off at my usual pace (you can imagine what that is) and about 35 minutes later when I got back to my starting point (my home), I seriously got a shock of my life. I couldn’t believe the speed I was walking at! Just a fraction of a second later, I realized that my body wasn’t doing too well. Let me skip the details for now. It’s sad when this happens…. when I don’t realize what I’m doing to my body because of my mind.
My body was in pain throughout, but I didn’t stop. I didn’t register that I needed to stop.
So my brain was overworking throughout that week and when I went for my longer walk, my thoughts were really spinning and running at an unbelievable speed. I don’t think I was paying attention to my body even a bit (and I usually make sure I do) because I was busy catching hold of my thoughts. It was a week’s worth of mess that I had to figure out. Oh, AND, I lost my Bose Earphones few days ago (NOT the best time to have lost them……), so I was walking without music and I hate that.
I purposely listen to really slow songs so that I walk at a slower pace… take SLOOOOWWW steps forward…. one foot at a time….
That didn’t happen this time.
Being at the beach on a Saturday morning with all kinds of thoughts and without your earphones is a bad idea idea. You’re surrounded with people running, cycling and rollerblading their butts off; which is extremely motivating and demotivating at the same time. I usually feel motivated…not to try and match what they’re doing or their speed, but to do the best I can while listening to my body.
I didn’t feel motivated that day. It didn’t feel positive. The speed at which my brain was working matched the speed at which people around me were moving. I’m sure this had a subconscious effect on me and I ended up walking at a speed I forgot I was even capable of!
So here’s an equation I came up with. It’s harder to comprehend than Calculus. Trust me.
No slow music + thinking a lot + feeling like crap + checking out fit people = walking too fast = 4X(normal pain) + tensed back + inflamed knees = ruined routine for a week or two = feeling worse = slowing down all over again + talking lots of painkillers + icepacks and hot bags + extra tape and guards
You know, I can push my body if I have to or if I must. But I don’t want to now and I surely don’t think it’s worth the pain and suffering it causes.
Each time I think about the consequences of pushing my body, I do not get a good feeling. Nope, not even if I walked at a speed I haven’t in sometime. What makes me feel good is that if ever I have to run for my life, maybe I’ll walk for my life at a faster pace. But other than that, nope. This doesn’t feel good.
Waking at an abnormal speed isn’t a solution to having my thoughts perfectly sorted. Maybe it works for others but I need be approaching this by slowing down (Yep! For the billionth time and counting) and working my way out of things. I need to keep calm and slow down.
I’m already feeling MUCH better now. I will give myself a few more days to feel better and maybe a week to be able to walk again.
As I understand my condition more and more, I’ve realized that sometimes it is possible to feel really demoralized and disheartened. There’s nothing to hide about it; there really are some days that pull me down, especially the days I feel as if I am not achieving something. These are usually the times when I forget for a moment that I don’t need to be achieving things at the same rate as everyone else. It gets even harder because I am so used to having goals, deadlines and objectives that this, my present, sometimes just feels like an empty space of nothingness. I think that’s good in a way; this empty space of nothingness has been helping me more than anything else ever did. I need this empty space for myself. But on some days, this very empty space can feel disorienting. I think I was addicted to wanting to complete tasks all the time, and now I’m forced to slow down. I choose to slow down too.
With so much pain and so many things to do for the body, there are times when my yesterday, today and tomorrow begin to look the same. For someone who has to deal with such increased mobility in her body, some amount of stability in the mind (some sort of routine) is always helpful. It brings a level of assurance. I need this stability, this balance, and this certainty that things will stay a particular way. There is just too much instability, uncertainty and imbalance to deal with otherwise!
I’ve noticed that each time I start to feel bad about anything present, I start to feel bad about future…. and the times I feel bad about future, I feel worse about everything present. Feeling worse about my present situation can ruin my day quite a bit. If I’m not able to find a way to motivate myself (or at least be okay) being where I am, it’s even harder to feel hopeful about future. I like to feel that I am still achieving smaller personal goals in order to be able to achieve the bigger ones later.
One of my main goals these days is to have a certain amount of control over my own body so that I am able to at least look after myself to some extent. This means that I need to be able to do some really basic things in order to feel a little less dependent on people around me when it comes to my own body.
So because I still love to own a planner (My 2015 Planner is this gorgeous Turquoise hardcover planner from Kikki.k), and I still feel ridiculously happy when I can strike things off my to-do list, AND because I want to make sure that I keep going, I come up with weekly goals for myself. I try to write very specific ones, but I know that they have to be flexible; just like my body – if there ever comes a day I am not able to do something, then that’s okay. If there ever comes a day I don’t feel like doing something and want to do something else, then that’s fine too. There is no need to kill myself over certain things because I know that no matter how much I try to be in control, things CAN happen. Things HAVE happened. These goals are not meant to stress me out, they’re meant to remind me that I am capable of doing what works for me AND that I still have a direction; even if things feel unclear sometimes.
These goals are just simple list of things I want to be able to do today that will make me feel good today. Bigger goals and dreams can take a back seat for now (or they can nicely marinate themselves at the back of my mind). The last thing I want this to-do list to do is to make me worry about future so much that I spend all my energy thinking about tomorrow, and forget that today is in fact more important than tomorrow can ever be. I did that too much in the past and though I can argue that it worked back then, that very attitude doesn’t serve my present at all.
What doesn’t serve my present can’t possibly help my future. Can it?
I don’t think it can.
So this is what I do:
Every Sunday night, I sit at my desk and think about ten things that would make me feel good about myself in the present moment. I ask myself, “What are the things that I would feel great striking off my to-do list at the end of the coming week?” and “What are the things I can do for my mind and body to feel a little bit at peace with where I am?” At times these goals are slightly more ambitious. But there surely days (and weeks) when my one and only goal is to get out of bed and at least walk around the house.
This to-do list is a mix of things that are directly related to, or totally unrelated to my physical health. I’ve had goals like “Start working on blog”, “Purchase blog domain” or even things like “Meet a friend for coffee”, “Don’t miss naps this week” and “Drink more water” . So yes, they tend to vary quite a bit every week.
Here’s my list for this week:
5April 2015 – 12 April 2015
Pilates Sessions X 2
Reply to Sarah (with points)
Finish off current book: Macrobiotic Diet
Pool Walk X 4
Meet a friend for dinner
Check: Voluntary Service
Longer Walk X 1 (Beach?)
Blog Entry X 1-2 or 1 Pattern Design
Check: latest HMS updates
Order next batch of books
Once I am happy with my list, I open my awesome planner (I don’t have a photo for this one – maybe next time), which usually has some items already in place (like Physiotherapy and Pilates slots), and start adding some of the weekly goals into the free slots available through the week. I shuffle things around whenever and however I want to, and tick the items off as I get through the week! And this…. feels freaking amazing every single time.
Another monthly practice that I have adopted very recently is to stare (STARE) at my calendar at the end of each month and really SEE what I have achieved. A lot of times we fail to see that even if our days may look the same, there’s actually quite a bit that we have managed to achieve at the end of the month. For me, there are times something pops up out of nowhere – like an opportunity to participate in a charity event or help a friend with something – and these are still tiny achievements at the end of the day.
In the month of March, I got a chance to write a Patient’s Story for Global Genes, started my own blog FINALLY, was able to keep up with Pilates and walking pretty well and also managed to catch up with a few friends! Of course I had my days of pure weakness, total brain fogs and lack of energy
I slept like usual. On my back, with four hot bags placed stratigically on the bed and a pillow under my knees..
….and then in the middle of the night… I turned onto my left shoulder and pretty much slept on it till morning… I think I woke up because I heard a tiny “pop” . Yep. Very common!
It was BAD. Super BAD. Getting up feeling like your left side is on fire is a BAD sign.
I had pain running down right from the back of my left ear, down my neck, into my shoulder joint, down my elbow, into my wrist and my palm, all the way till the tip of my left ring finger. My muscle were so tight!
My Physiotherapist describes my muscles as “crunchy” and it’s extremely disgusting to hear the crunchiness as she works on them. Today’s session helped loosen it all up a little bit and I managed to get through the day…. but right now as I type, I can feel my left side stiffening up… so I’m going to stop now.