Some people grumble that roses have thorns; I am grateful that thorns have roses. ~ Alphonse Karr 🌹
Today has been a rough day. There is nothing worse than having a flare up during your monthly cycle. My back and tailbone are experiencing deadly spasms and the cramps this time are worse than last month. Monthly cycles don’t look the same like they did years back. EDS takes your ordinary monthly cycle issues to yet another level. Pain level just shoots up, your joints feel more loose than normal, (I’m excluding all the other common symptoms every woman deals with anyway) and getting out of bed is next to impossible. I’ve forgotten how to function today.
Ok, I can’t lie. I am tired. Freaking tired. It’s just been two days and I’ve got two weeks ahead. I want to be able to get through these two weeks well, even if there is a high possibility that my days will leave me with no energy for myself. I might need an increased dose of pain-killers too. Maybe I’d need most of my joints taped up too. I’m prepared and I have the support I need.I keep telling myself, one day at a time. One day at a time. One day at a time. There is work and Pilates and Physiotherapy and some not-so-fun paperwork and I’m on a short family vacation at dad’s because my little brother’s here. I can’t predict how the next two weeks would pan out. I can’t tell. I’m not used to such a schedule. I could do with all the spoons on this planet right now.
I recently met someone who told me that I don’t look sick at all.
I said, “I know. I’m happy I don’t I guess.”
It never fails to make me wonder what we expect “sick” people to look like. What we define as “broken”. What we think needs “fixing”. Whether “imperfections” are always visible and whether what we see is all that there is.
There was a phase when I wished people looked at me and believed my words. These days I trust that people who need to know will see it for themselves and trust me, while the rest are free to create a story around it. Believe me, you can’t completely hide chronic/rare illnesses.
You don’t have to look sick to be sick or feel sick.
And you don’t have to prove anything to anyone.
All you have to do is attempt to feel and be as healthy as possible, and always be honest with yourself – that’s all that matters.
Lots of love
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.
When your joints freeze because it’s raining and it’s too cold to handle!
The cold gets to you – you like it but your body doesn’t. You want it to be cold outside because you’ve been dying in heat for a long time but your joints feel the chills deep inside. You’ve been dealing with migraines and the cold is sort of soothing, in some ways. But you joints hate it. They ache and hurt and feel heavy. They feel fragile. It’s horrible to have both these experiences simultaneously – on one hand you are sick of the humidity and stickiness and want to wear thinner, lighter clothes and on the other hand your joints need to be taken care of. Maybe you need a thick coat.
Not just that, it’s not so easy or straightforward – just wear more layers and get to work – nope. That’s not how it works. It’s more like this – you wear extra layers and sit in bed. Not even sit, you lie down in bed because your joints are literally cringing away and you can’t do anything. You may even need socks because the old grandma that lives inside of your body (sometimes I wonder if there is an old woman living inside of me. An old soul of some sort) wants her feet massaged and needs her socks on. She needs hot packs too – maybe even four at times.
So you wait in the bed till you feel good enough to get out and begin your day. Or you end up making yet another decision to listen to your body and stay in bed all day – if that’s what grandma wants. You listen to grandma. Because your brain doesn’t know any better at times.
Chronic illness messes with your brain on a daily basis. Chronic illness which causes you debilitating pain every minutes of the day literally screws around with your ability to rest your mind because you are just constantly making decisions. Some of these decisions may sound so freaking trivial to majority of the people but you can’t even imagine what it is like to spend your brain cells over “trivial” matters for your health and your body. Technically, you’d prefer to save these for “more important things in life”.
But even the little things matter so much to us.
If an average human being makes 4 “trivial” decisions per day and 0-1 bigger ones, we’re easily making about 50 “trivial” ones and 10 bigger ones on a daily basis. I’m not even exaggerating – maybe the ratio is even greater.
Point is, it is necessary to slow down. Especially because we are making so many decisions all the time. No body needs extra brain cells wasted. No one wants extra pain. You’d say, there are far more important things to worry about and to that I’d say no. There aren’t. I guess we don’t have the privilege – we really don’t. The most important thing to us ends up being our health. Overall health. We choose to give in to it because if we don’t, we’re asking for more suffering. These “trivial” and “insignificant” issues can cost us our health.
It’s frustrating at times but as you learn to grow (when I say this, I’m referring to the growth you experience as a person, the change you go through as you deal with the illness on a daily basis and the acceptance you start to develop) with your illness, you learn to become patient and treat your body like it needs to be treated. With love and respect, and extra kindness. Even if that means having to sweat in a fur coat to make your joints feel a little better.
Happy Weekend! And yes, “Baby, It’s Cold Outside”.
To be honest, I’m super beyond fatigued. There are times I wish things looked different, or that my health was like that of any 25 year old. Sometimes I feel that’s the kind of life I’m more familiar with and had plans for.
What happened then?
Well, I know what happened. Life (actually) happened.
Lots of things went wrong and many others went right for me to be where I am today. Both ways, I’m grateful because I’ve grown as a person and figured so much out! Dealing with a chronic illness is painful and challenging as anything can be – to live with it in your body and make choices that honour your health, which involves making some really tough decisions. REALLY tough. You have to find ways to embrace your limitations and open your eyes to new possibilities – and believe me, it takes time. Ages, sometimes. At times you feel great, and at times you don’t.
Every day brings new opportunities and new challenges – sometimes both, and you don’t know what to do. I’m always trying to make choices from a place of my ability rather than my disability… But frankly, on days like today, it just doesn’t work. You want the day to end. You want to be in bed and wait for all your energy to come back to you.
I can’t say I hate life or the circumstances I’m dealing with – no, it’s a part of me. A part of who I am. My experience is now a part of my biology. And my biology is a huge part of my life. It is what it is and I’ve largely come to terms with it. It has made me who I am today and it is making me into who I can be. I strongly believe that I own this illness and don’t let it own me – on a greater scheme of things, I’m learning to manage. Even then, it is still very physically, mentally and emotionally tiring at times.
It’s only 3pm and I feel as if I’ve been up for 3 days, ran 3 marathons and been on anaesthesia since. Seriously, I want to hibernate for a long time. This week has been crap and tiring. I can’t wait for it to end :) Enough already! I think next week will be better.✨
Love to all