Exercising Intimidation

It has been about a month now that I was discharged from aquatic physical therapy and was advised to join the “medical exercise” program. Physical therapy is one-on-one with a therapist; medical exercise is in a small group setting with an exercise coordinator. But they are both in the warm water pool, doing similar exercises as PT. I had noticed better mobility and endurance during my time in aquatic PT, so I thought continuing it in some form would be a good idea.

From what I had observed in the pool, I did not think there would be much difference overall in the two programs, and it should be a relatively smooth transition. But unfortunately, I immediately noticed a huge difference between the attitudes of my therapist and the exercise coordinator, and that too in our very first evaluation meeting!

In the past, I have felt my therapists were very good about taking it very slow and making sure that I was comfortable in the exercise routine. Our goal was to get me to start moving a little bit more smoothly and that was it. I never felt that I was pushed too hard too soon (except maybe once and we quickly backtracked from that). I knew PT wouldn’t last forever, but we took baby-steps until we felt I was ready for a bit more semi-independent program.

Now when I got to this semi-independent program, I felt pushed to immediately move on from there, despite her less-than-heartfelt verbal reassurances to the contrary. I tried to carefully describe the conditions under which I ended up in PT, my failed attempts at at-home exercises, yoga/chi gong in the past, how I felt embarrassed and intimidated at the pool in my university’s rec center around normal people my age. I explained that I liked the hot water therapy pool, that it was doing me a lot of good to just soak in it, so I preferred that to the gym. But it’s like she just couldn’t let it go that I had to move on one day into something else, even after I told her that I was intimidated by many of those things just now!

I suspect she was trying to motivate me, and make me see that I could get better and be more independent. She said she wanted to work on muscle strength and balance which should help me move on to some beginner yoga/tai chi. She talked about keeping it mild, not even moderate, and transition into a public pool under less athletic settings. But she kept trying to push independent exercise ideas before I had had a single class with her! And it left me feeling like she wasn’t very enthusiastic about having me in the program. I felt my anxiety rising, and at times I thought she noticed it too, but did not take enough of a cue to stop pushing me farther than I was ready to go right now. I felt like I had barely climbed the mole hill, and I was being pointed towards a freaking mountain!

What made it worse, I think, is that all this was happening right after I had to explain the whole history of my symptoms to her top down. It is something I never enjoy doing. I feel like I sound like a hypochondriac who needs to shut up already. Now I had the added sensation of feeling whiney as I was afraid to embrace her good suggestions.

All in all, I was glad, however, that I did not sell myself out and invalidate my emotions based off the vibes I was getting from her. I often have a tendency to say to myself that what I am feeling is false, but most often that it not the case. I am simply afraid of admitting of the consequences of the truth. I mostly refrained from doing that this time, while attempting to retain compassion for her point of view.

I have my first session with her this Friday. I am keeping my fingers crossed that our first meeting (that I described here) is not a harbinger of things to come. I know I am looking forward to being in the warm water pool. So fingers crossed that all goes well!

Love,

Fibronacci

 

Pining for Spring

Heat sensitivity is a terribly annoying thing if you have always lived in tropical/sub-tropical climates. But ever since I developed fibromyalgia, it seems to be getting worse each year. As soon as the summer rolls around, the heat just saps me of my energy and especially makes my legs ache. Then the storms come and add to the aches with their low pressure systems. It is a vicious cycle that is hard to get out of.

Today is the first time I went outdoors by one of my favorite lakes in town to feed some birds. It is something I enjoy very much in the spring, but today I got tired quickly, and even the birds looked lethargic.

Luckily, I was able to get some nice snaps of them last time during springtime!

The muscovy ducks, mallards, sparrows, blackbirds and cardinals seem to really enjoy the seed feast. The mallards don’t always play well with each other though – they seem to have a strong pecking order! The sparrows are the friendliest, most communally feasting birds.

The other birds in the area are blue-jays, robins and brown thrashers. The robins and thrashers seem to like hunting for their own food and don’t like any free goods. The blue-jays are interesting because they like the seed but they seem to feel unsafe on the ground, so they stay on a constant move (very fidgety birds, hard to get a decent pic)!

These are the birdies my husband and I tried to play with today. Although we were both on the tired side (the birdies and I), seeing them did brighten my day up a little! When the big things that I have no control over (like this insane weather) don’t fall into place, I try to focus on the small little things that bring me joy. It may not fix all my problems, but it does get me through another moment, another day. And, really, what more can I ask for?

Love,

Fibronacci

Young, Invisibly Ill and Stigmatized

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I’ve used this before, but it is just so appropriate!

It’s been a rough week, with a crazy fibromyalgia flare that doesn’t want to leave, daily migraines and a weather pattern that is not helping my recovery in any way. For several days, if I was a cell phone, my battery was dead. It is only starting to pick up some charge now, but once that charge is depleted, I am out. I wish I could switch my body to Nokia – charge up to 100% quickly and retain charge for a longer time!

Everybody has been very kind to me during this period, which I  am very grateful for; but at the same time, I also felt quite starkly the disbelief that surrounds a young person when they get sick! People seem much more likely to believe that you are stiff and achy, have no energy, you feel like a train ran over you, all day everyday, and conversations require effort, if you are 65 years old. In a sense, I can see why, because it is much more common to feel that way as you get older. But fibromyalgia can feel like that to a 25-year-old too! There’s nothing they can do about their bodies developing a chronic illness, and they’re not lying about how sick that might make them feel!

In fact, young people can be a lot sicker than I am – St. Jude’s is a hospital devoted to treating young people with cancer, which objectively is a lot more serious than fibromyalgia. So it is a little blind-sighted to act as if all young people’s lives are meant for “working hard all day and partying harder all night.”

Saying things like “you need to get over it” or “learn to deal with it” doesn’t help the situation either. I know when I heard these, they were meant to motivate me to not let my illness stop me, since I am still so young. But to say such things is really insulting the person living with the illness day in and day out. What I think a lot of people don’t realize is that we are already dealing with it – all the time! I don’t know that it is possible to remain sane with chronic pain unless you have found a coping mechanism! So statements that show a lack of understanding of the tribulations of the condition can come across as quite rude to the person fighting pain and still at work, listening to that.

While part of the problem here is the age of the patient, the invisibility of the illness is definitely the other half. Nobody would seek to question if a young person walked into an HR office and asked for accommodations because they had a broken leg. But if somebody did that with fibromyalgia, they may have to deal with some raised brows. Invisibility is not only physical. It also matters how well-known the disease is and how much awareness there is about it. Cancer may be an invisible illness on a person, but no HR would question a request for accommodations from a young employee with cancer. A fibromyalgia diagnosis, on the other hand, would get you more raised brows. This is why I have a lot of respect for people who raise more awareness about invisible illnesses and it’s impact on people. Shout out to my fellow bloggers who do that here!

All in all, I can understand why a young person’s illness can make people uncomfortable. It is a reminder of the fragility of health, and maybe even of life itself. And nobody wants to be reminded of that! I understand that most people are not trying to be rude or demeaning. They may just not know how to act or what to say in awkward situations, and cannot handle them well. As such, I do try to treat those people with compassion.

However, if you’re a non-suffering reader who can relate to this article, I hope you can take away some ideas for what not to say and how not to act towards your suffering acquaintance. Your effort at understanding our plight will be duly appreciated.

Love,

Fibronacci

Learning to say NO

It seems a rather simple two letter word – no – yet it can be one of the hardest things for me to say!

'I'm just a girl who can't say no.' (Woman at a speech therapist).

With fibromyalgia, however, I knew I had to choose my battles with care; which means, I had to start saying no to some things. I learned how to do it fast for certain things, like declining social invitations I did not have the energy to attend. But it has been a learning curve on how to say no in a professional setting.

As a Type-A person, I had always taken some pride in my professional life for being able to juggle various obligations and staying afloat. Saying “no” felt defeatist, like I might be giving it up without a try. In fact, I was even told as much once, that “I was giving up too easy.” And yes, that stung, coming from a person who had no inkling of my daily struggles. But even in that moment of anger and frustration, I still wondered, was I really giving up too easy?

Say-no
Who doesn’t love a flowchart that can answer life’s deepest questions?

Last week, I had to turn down taking on the major responsibility for a new project. I knew that project would require hours that would be hell on me, and I wouldn’t want the project itself to suffer because I couldn’t keep up with it. In short, I felt it best to say “no” for the sake of project’s success as well as my health.

It was a difficult conversation to have with the boss; much more difficult than “yeah sure, I’ll do it.” I tried to put the project first when articulating my reasons for not taking it up, and offered alternative solutions. Despite my best efforts to be diplomatic, I heard the phrases “getting out of hard work” and “those who do the dirty work should get the credit” get littered into the conversation. I tried to not take it personally and agreed that indeed ones who perform the dirty hard labor should receive the primary credit.

Yet the connotation was clear, that I was trying to get out of doing hard/dirty work and should not expect to get credit. I never had. But it stung a bit anyhow because it came from one who, I would have thought, knows that I never shied away from hard work. Still, I couldn’t imagine anybody would be thrilled to take a “no” when they need someone to do the job; so I still tried not to take it personally and gave him the benefit of the doubt.

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At the end of the day, I reasoned that only I can know my limits, and setting those boundaries is a healthy habit. I have a responsibility to protect myself and nobody else could do that for me. Nobody else would know how to. So I had to step up for myself and advocate for my own health care needs. Sometimes it can lead to uncomfortable conversations. Sometimes it can take people time to get used to hearing no from people like me who used to always say yes. In the meantime, I try to remain gracious and not let the negative comments touch my core. Difficult as that may be, knowing that this is the right thing to do makes it just a little a little bit easier!

Love,

Fibronacci