What a Week Is Like in My Life With Joint Hypermobility Syndrome
I am sick.
To a certain extent, I have always been sick, but over the past three years, my health has deteriorated considerably. I went from balancing work, study, training for my first 12 km run and learning German in my spare time, to unable to get out of bed and make my own breakfast. This was obviously not something I could hide, so my friends, family, colleagues and professors found out about it sooner or later. Despite this, when I mentioned being in what I consider “full-time” rehabilitation, I was greeted with mixed reactions.
“What do you do all day though?”
“But don’t you still have time to…?”
“Why aren’t you still…?”
“Since you have so much spare time, have you thought about…?”
The unifying theme was that the majority of people (even the lovely, supportive ones), didn’t seem to be able to understand how getting better could be a full-time job.
Although frustrating, this is understandable. I’ve come to make peace with the fact that unless you have experienced chronic illness or pain, it’s incredibly difficult to understand all the intricate ways it impacts your life, all the new skills and strengths you need to develop, and all the practical changes you need to make to survive it. In addition to this, many people overlook the fact that just because you are in treatment for one or more illnesses, that doesn’t mean you don’t still have other symptoms for which you are still seeking a diagnosis or effective treatment. Balancing all of this is exhausting, time-consuming, and at times, soul-destroying.
In the hopes of spreading more awareness about the reality of recovering from (or simply managing) severe or chronic illnesses, I’ve decided to share what a typical week in rehabilitation looks like for me. This is a combination of treatments in a formal hospital rehabilitation program, treatments that I have chosen to access privately, and re-building some of the day-to-day skills I lost while I was unable to get out of bed.
Mondays always give me a little bit of anxiety because they involve the most challenging part of my week, my hydrotherapy session. Although I enjoy the water and find this form of exercise to be really beneficial for my balance, the combination of getting to the hospital (while trying to avoid paying for an Uber!), getting 50 minutes of exercise, and getting home to wash my hair absolutely destroys my fragile energy reserves. Afterward, I often find myself falling asleep as early as 5:30 p.m.
I wake up, put on whatever laundry I didn’t get to on the weekend, and get back into bed to do my breathing exercises. I do a combination of exercises that are supposed to help with circulation and decreasing muscle tension. Meanwhile, my love brings me a heat pack and a cup of chicken broth so I can start warming up my muscles and getting my blood pressure up with some sodium. I take the pills I’m supposed to have on an empty stomach.
Next, I get up to do my mobilization exercises. I do these every morning to warm up my joints, minimize the risk of hurting myself during the day, and reduce morning pain levels. I then get back into bed a second time (have I mentioned that I love bed?) and Haydn brings me something to eat so I can take the other pills that have to be taken with food. I get dressed and begin the mammoth task of refilling my pill boxes with all the medicines, sodium and supplements I will need for a whole week. I check which pills are close to running out and whether or not I have scripts for them. I head to the pharmacy to replenish my supplies (or if I’m having a bad day, ask Haydn nicely to do it for me) and make notes of which scripts I need to get refilled at my next doctor’s appointment.
I usually fall asleep for a little while after this.
After lunch, I get ready to leave for the hospital. I have to get there early because the pool is on the opposite side to the only entrance that is open during COVID (and I am tired and slow). The class is a combination of exercises in the water for building strength, balance and proprioception. It’s a surprisingly good core workout! I take these classes mainly for my issues with balance and uneven level of muscle tone, but it’s also just a good form of low-impact exercise for me.
We’re not allowed to dry our hair after class because of COVID restrictions, so I’m cold and grumpy on my way home. By the time I’ve washed my hair, I’m too tired to dry it and sleep until dinner time.
After dinner, I try to work out some tight muscles with my foam roller, but my shoulders are too tired to hold myself up for very long. Instead, I decide to work on my proofreading for The Gutenberg Project. At the moment I’m working on a French translation of “The Star Rover” by Jack London, definitely one of the more challenging projects I’ve done!
After my morning routine, I find an excuse to get back into bed a third time to do my jaw strengthening exercises while I watch Netflix. Today it’s isometric and postural exercises to re-position my neck. I dislike these. Even though they seem to be helping with the unnerving subluxations of my jaw, I have a big spike in my pain levels and get a massive, temporary headache afterward. My physiotherapist is recommending that I see someone who specifically specializes in jaw problems, but I’m still waiting to hear back about an appointment.
Speaking of the physiotherapist, that’s where I’m off to next. Fortunately, they’re just a short walk from my house. Today’s appointment is to work on the re-occurring tendonitis in my knees. We work on massage for a while and then check my progress with my strengthening exercises. They point out that my balance is very off compared to usual and I explain that it’s because I had a migraine on the weekend. I often have lingering effects from the temporary paralysis on the right side of my body for at least a few days afterward.
I’m feeling a bit despondent after the appointment and the comments about my balance. I know nothing malicious was meant by it, but I’m disappointed. I’ve been working on balance in the pool for several weeks now, only to go backward due to the sudden uptick in migraines. I’m tired and sore so Haydn kindly volunteers to make dinner without me while I lie down.
This morning’s jaw exercises involve me repeatedly biting down on a large cork. I don’t mind these nearly as much and they seem to be making it easier for me to eat firm foods again. I also have to call my Mutuelle this morning (the public health insurance providers in Belgium) about a problem with my physiotherapy sessions from last year. Unfortunately, due to the lack of in-person appointments right now, the call wait time is long.
Next, I have a double appointment with my doctor. We’ve been seeing a lot of each other lately! I need to update my scripts and tell her about a mild allergic reaction I had to a stomach medicine that I was prescribed (so that we can discuss alternatives). I also raise my concerns about the increasing frequency of my migraines and the frightening episodes of paralysis that have been preceding them. We talk about the next steps.
I’m always exhausted after the doctor, but still need to find the energy to do my cardio this afternoon. After a quick lie down on the couch and a heroic dose of electrolytes and caffeine, I’m ready to go. I’m trialing doing shorter intervals of high effort cycling this month rather than long static sessions. My doctor and I are hoping this will help me get my heart rate up a bit more frequently without putting so much strain on my knees.
I manage to get some writing done after dinner and a quick brainstorm of what photos I still need to take before I can launch my blog. Hopefully, if you’re reading this, it means I succeeded!
I awake drenched in so much sweat that I wonder if I’ll soon be adding peri-menopause to my list of ailments. I’m not exactly sure why this happens to me yet, but it seems to be a problem the night after vigorous exercise, especially if I haven’t been getting enough sodium. I have to change my clothes and sheets straight away and sit on the floor to do my morning jaw exercises instead.
I feel disgusting and exhausted. I don’t have the pain psychologist until the afternoon, but I still need to prep my notes for the gynecologist next week and have to weigh up whether I want to cram more into my day tomorrow or just suck it up this morning.
I decide to suck it up.
My medical history is complex and because I take the majority of my appointments in my second language (French), I like to do some preparation beforehand. This is especially true when I’m meeting a new doctor for the first time, like I will be next week. I always find going over my medical history upsetting, and sometimes struggle to find the necessary courage to ask questions, so the preparation sessions set me on edge a little.
I migrate upstairs to do some meal planning for next week and make a list of what we need from the grocery store. Being able to get groceries delivered from the supermarket during COVID has been a life-saver! I think it’s something we will keep doing, even after things go back to normal here.
Meal planning is an event for me. Assuming I’m not having a gastroparesis flare-up (during which I follow an entirely liquid diet), it’s very hard for me to get all the nutrition I need because of multiple food allergies and sensitivities. I was lucky to have been able to see a dietician several years ago for advice on how to eat well with my restrictions. In the last three years though, my sensitivities have expanded considerably and do not seem to be consistent. At the moment I can only count about 10 ingredients across all the food groups that I can consistently eat. What makes things even more difficult is that I’ve struggled on and off with weight gain over the past few years for a mixture of reasons (medications, hormonal changes, sleeping/resting excessively etc.) and so am trying to keep my overall calorie intake down.
I make notes for myself on how many servings of fruit, vegetables, protein and carbohydrates we are getting from the meals that I plan for us, as well as leaving myself notes for which meals/snacks I may need to watch out for a possible reaction from (if it contains an ingredient I only react to occasionally).
I’m in a properly sour mood after all of this, so it’s lucky that I have a pain hypnotherapy session next. These sessions can be still confronting at times, but I find them less draining than psychotherapy. I haven’t been doing these sessions for long but I do feel like they are already helping me cope better with my migraines. I wish they would hurry up and reduce the frequency of them (apparently an eventual possibility), but the psychologist did warn me that this can take some time and that doing the mental work of talking about fears, past experiences and the grief of being ill can be very stressful and temporarily provoke even more migraines. Why can’t things just be simple?
When I get home Haydn has a hot drink ready for me and asks me if I want to play Stardew Valley after dinner. I’m so lucky to have him taking care of me after my sessions. I honestly don’t know how I would have survived this year without him! His kindness gives me the mental strength I need to practice my knee and shoulder exercises before we eat and enjoy our game time.
On Friday mornings I like to take it easy and revel in the glory of making it through another week. In the afternoon I have appointments at the hospital gym, where I work on a combination of cardio and strength training. We focus on the more difficult exercises that I need help and sometimes physical assistance to do. I also get exercises for “homework” for the weekend. I exercise with a heart rate monitor and am supposed to keep it below a certain threshold, but in reality, this is hard to do without staring downwards all the time and I often struggle with dizziness after these sessions.
Every week we discuss my progress, especially in regards to joint dislocations and balance. I’m gradually accumulating a stack of various exercises to stabilize my list of problem joints, which seems to be constantly expanding! Overall though, dislocations are getting less frequent and less painful when they do occur.
What’s actually bothering me most at the moment is that my cardio progress is being inhibited by the weakness on the right side of my body after migraines (more so than it is by my actual fitness levels). I make a mental note to discuss this with the physical medicine doctor and eventually the neurologist when I see them.
When I get home I spend some more time with the foam roller and on light stretching. It irks me that I seem to spend almost as much time on recovery as I do on the actual exercises, but it does make a considerable difference.
After dinner, I work on writing and proofreading. I don’t think I’m going to make it to my goal of three proofreading sessions per week, but I’m trying to work on being more flexible about my progress and show myself more compassion.
What my weekend looks like varies a lot. I sometimes go for walks with a friend who lives nearby, or make plans to Skype with family and friends in Australia. This Saturday I had a migraine though and had to cancel on a friend I’ve been trying to catch up with all week.
Like most chronically ill people, I usually feel pretty guilty when canceling plans, but not with migraines. I find there’s something oddly liberating about being so unwell you know that you literally don’t have a choice but to stay in bed.
On Sunday I decide to stay home and focus on quality time with Haydn. He goes out for croissants (yes they are one of my 10 safe foods) while I start on the laundry. We eat brunch in bed and watch Netflix. Next, we pin down Adora the kitten and convince her that we really do need to brush her and trim her nails. I get out some cat treats and do a training session with her to get her back on my good side.
In the afternoon, I do a strength training session, practicing the things I learned at the hospital on Friday. After that, I sit down and plan out next week. I think about what my top priorities are and what is expendable if I’m having a really bad day. I plan out any essential tasks in pockets of time around my upcoming appointments and re-schedule with my friend from Saturday.
I look at my notes from my workouts this week and try to set realistic goals for my following training sessions. Above all, I try to remind myself that even though there always seem to be more tasks on my list than I have the energy for, I’m doing the best I can. While it is my responsibility to put in the work to get as healthy as possible, it is not my job to have all the answers, cure myself, or progress faster than what is realistic. Not everything in life can be perfect and some things have to go on the back-burner right now.
I hope this post has been insightful. If you have someone in your life who is chronically ill or recovering from a serious illness, please take the time to learn about what their day-to-day life is like. Don’t assume that they are looking for more things to fill their time. They are probably working a lot harder behind the scenes than you realize. If you are concerned that they are not getting adequate treatment, please ask them. Don’t assume that something isn’t working just because you didn’t see progress after the first week. A year ago, I could only do 10 squats before having to lie down and was falling asleep after every meal because digesting was all I had the energy for. These things take time. Many illnesses have no cure and sadly some don’t even have particularly effective treatments. If your loved one really isn’t making progress, offer practical help, not judgment. None of us choose to be sick. Offer to drive them to get a second opinion from another doctor or make them some healthy dinners so they have more energy to go research other treatment options. Engage them in productive conversations about what their life is like and what is and isn’t working for them. A little empathy and support can go a long way in helping someone with their recovery.