Painful Pins and Needles

I haven’t had a lot of luck finding someone who can help me clean my home and do my laundry on a regular basis since becoming ill. The last person I hired was wonderful. Unfortunately, for me, housecleaning was only extra part-time work she did to make ends meet. Fortunately, for her, she was able to find full-time work with enough hours and compensation that meets her financial needs. Her now full-time employment means that she doesn’t have the extra time – and I’m certain not the extra energy – to clean homes anymore.

Since losing her help, I haven’t been able to find someone or a service that will include laundry as part of housecleaning without charging an arm and a leg. So, I’ve returned to doing both tasks on my own when I have the energy and not too much pain, which means things aren’t always as tidy as I like them to be. This past weekend, I had to do laundry because my dirty towels and bed linens were starting to pile up. All the activity and energy I needed to get them clean caused a pain flare up and triggered a symptom I haven’t had for a long while: my feet and ankles are swollen.

The usual warning sign of feeling pins and needles prickling from my toes and up my legs all the way to my hips preceded this pain flare up. Feeling pins and needles always causes an extremely high level of anxiety in me because I know it’s what happens right before the level of my pain starts to climb; and once the pain starts to climb I have no control over how intense or painful or for how long the flare up will last. All I can do is hope that it won’t be so terrible that I’ll have to go to the hospital emergency room for help to cope and get some relief.

On the other hand, I don’t get any warning sign(s) before my feet and ankles swell. It just happens and it adds to the pain in my feet and ankles because they become tender to the touch. I never know how swollen they will become: at times, I’ve been unable to wear certain shoes or boots because my feet seem to grow a size. I never know how long the swelling will last: this is the third day so far and sometimes they’ve stayed swollen for weeks.

Furthermore, after all this time, my Pain Specialists don’t know the reason(s) behind the swelling. At one point, they believed they increased the dose of one specific medication I was taking (Gabapentin/Neurontin) too high. This made sense because one of its known side effects is swelling of the hands/ankles/feet. However, last year, when my Pain Specialist decreased the dose then eventually removed Gabapentin from my treatment the swelling didn’t immediately go away. Some months later, it did stop, and it stayed away since about the middle of last summer. Why it came back a few days ago, I’m not sure.

So, once more my legs feel as if they are on fire as the pain builds and they swell. I’m doing my best to keep my legs elevated because I hope it will help to reduce the swelling – even if it’s only a little bit – and staying off my feet can help me cope with the pain flare up. I’m also sticking closely to my medication schedule by taking them as soon as my alarms go off because I want to maintain a steady level of pain medication(s) in my system.

If things become unbearable, I’ll make my way to the hospital emergency room.

There’s not much more I can do…



Panic Without A Disco

I had a panic attack this morning. It’s the second one I’ve ever had. Both have been visited upon me since becoming ill almost four years ago. The first one came while I was in the hospital emergency room one night seeking help to manage an intensely painful pain spike. Immediately after the nurse injected a dose of morphine into the line of my IV drip it felt like there was an elephant sat on my chest preventing me from breathing properly. Catching my breath felt impossible and I started to feel dizzy, as I lay almost flat on my back on the hospital bed. The medical team treating me had to jump into action to make sure I wasn’t having an allergic reaction or a coronary episode of some kind. They ruled out both and concluded that the feeling that my lungs compressed caused me to panic.

This morning’s panic attack happened because of what I suspect were two concurrent shocks to my system. The first was waking suddenly from a very vivid nightmare. I don’t want to recount it because it’s the kind of thing best left in darkness. However, every moment of it felt frighteningly real and when I woke from it I was afraid. I was trembling. I was breathing heavily. When I moved I felt intense pain in my back, pelvis, and legs that made it hard for me to move so I could self-sooth and calm my breathing. Falling out of such lucid images of fear to land in the pain-filled reality of my body must have shocked my nervous system in a way similar to the day I received that shot of morphine in the emergency room.

When I was finally able to stand up I made my way to the bathroom where I sat for a long time trying to catch my breath. I had to talk to myself to coax my body back to calm. I’m not certain how long it took to normalize my breathing but it felt like an eternity and even then I was still shaking; still feeling the incredible pain shooting up my back and down my legs. In another eternity, I walked to the living room and sat on my couch where I have stayed most of today. I was also forced to face the reality that the plans of having one of my closest friends come visit me later in the day had to be postponed. That hurt too.

Sadly, there are times when my body and mind send me painful messages I can’t ignore. As a result, I’ve spent most of the day trying to move as little as possible because the pain has been so intense. Even though it’s early evening now, my hands are still somewhat shaky and my stomach still feels a bit unsettled. If I could clearly articulate what it felt like during this morning’s episode, it might look something like what I’ve drawn below: spikey, wavy, and disorganized all at once.

I hope no one else has had this kind of Saturday.




When Haste Really Makes Waste

When one lives in constant pain there is only so much energy available for doing things, so making mistakes with your time can be costly. For example, yesterday, I had to muster all the energy I could to get myself ready for an appointment with my Endocrinologist to make sure there are no hidden threats to my health lurking just below my larynx in my thyroid glands. However, nothing in the hours leading up to my appointment seemed to want to go right. Starting with overloading the circuit breakers while trying to make something to eat and running my stove, electric kettle, and toaster oven at the same time – I’m sure the toaster oven is the culprit because this never happened with my old one –, which resulted in partially toasted bread for my egg and cheddar cheese sandwich.

I’ll skip over showering and getting dressed because that’s an ongoing battle whether I’m rushed or not, and go right to traveling to the appointment. I ordered a ÜberX pick-up to get me to my appointment a few minutes early because my Endocrinologist may be the most efficient doctor I know so she is always on schedule. As I made my way out to the street, I called the driver because the Über app was still showing him as two minutes away, which is what it had said 2 minutes before. When the driver answered my call, he said he was waiting right outside my home. Of course, I couldn’t see him because once again the location-finder GPS in the app sent him about a block away from my home. When I told him this he seemed annoyed but said he would turn around and come get me. Luckily, I hadn’t closed the app and noticed that he canceled my pick-up.

At that point, time was ticking away and there were no available taxi cabs in sight so I ordered another ÜberX. This time I manually entered my address and searched for my destination, which I selected from a list of in-app suggestions. Can anyone see where this is going? The driver arrived within five minutes. I told him I was running late. He assured me he would get me to my appointment on time. He set off driving down a street, where at that time of day, promises slow-moving city traffic, but he was certain he would get me there on time regardless. I tried to let go of my anxiety and started to chat with him about why he chose to become an Über driver, which is a conversation that tends to deliver a wide array of responses: his was simply the convenience of managing his own schedule.

Within a few minutes, he announced that we were arriving at our destination, which for so many reasons wasn’t possible. When I looked up, I saw the wrong hospital in front of me. I looked at the Über app and realized that I had, of course, selected the wrong address for the hospital from the app-generated list when I ordered the second pick-up. Editing the drop-off address only made things worse because who knew that the hospital had so many clinic locations listed under its moniker. This course correction led to what might have been a hilarious sketch out of a sit-com, were it not for the fact that I was anxious about not making it to my Endocrinologist’s office before she shut the door for the day.

I directed the driver to take a back street shortcut where at the end of it we had to choose between joining slow-moving traffic again and trying to find the right one-way street to get us back on course. I opted for finding the one-way street, which all turned out to be designated to go in the direction opposite of where I needed to be and we landed on a main street with streetcar lines that ensured that our travel time would be extended. I called my doctor’s office to let them know I was running late but they were done answering calls for the day so I dropped right into voicemail. I left a message, which I’m sure was met this morning by a furrowed brow from the office administrator.

To get us out of the panic-inducing stop-and-go traffic, the ÜberX driver turned down a one-way street that could get us to a hospital entrance within a few short minutes. But… we missed the turn-off for the next street that would finally lead us there. He decided to take a chance at backing up to save me time, but there was a car coming down the one-way street behind us that made reversing an impossibility. By this point there was nothing to do but laugh. We were both laughing at what might be the most painfully comical Über ride experience for us both. We followed the street to its end then drove down two more streets that finally got us to the rear entrance of the hospital. I thanked him profusely for doing his best to get me there on time and only missing the mark by ten minutes after all the confusing stops, starts, and turns.

Then I walked as quickly as my very sore legs could carry me to the Endocrinology Department offices. To my relief, the doctor’s office door was still open and she was there, talking with two of her students. When she looked up and saw me, she smiled and asked what she could do for me. I apologized for being late for my appointment and she looked thoroughly confused. She told me I wasn’t booked for an appointment and double-checked her patient log for the day that I certainly was not on because my appoint, that I so determinedly tried to get to, was scheduled for June 19th, which was five days away. I had mistakenly entered it into my calendar for the incorrect date.

Thankfully, she’s a patient-focused doctor. Instead of making me return in five days, she sent me to the lab to do my blood tests and stayed after the office should have been closed, to see me. So I guess, as much time as I wasted by rushing to get to my appointment early – I do see the irony in that statement – the day wasn’t completely squandered.


Rush – Closer To The Heart


To Date (Or Not) With Chronic Pain

Some months ago, a friend I’ve known since junior high school had a very pointed conversation with me about dating and intimate relationships. He caught me off guard with his questions about my romantic life or lack of one. He was curious to know why, since becoming ill just over three years ago, I haven’t dated at all. His concern was that I am allowing my illness to define me and overtake my entire life. He pointed out that I am more than my illness and pain and that people with more severe disabilities and/or debilitating health conditions still manage to engage in fulfilling intimate relationships.

In our conversation, I told him I couldn’t get into a relationship because I was focusing on my health and all I need to do to restore it. In return, he asked how long I planned to focus on my health alone since almost three years had already passed. Would five years be enough or maybe ten? What would happen if I let all those years pass without any improvement to my health and never taking the time to explore the possibilities of sharing my life, even with an illness, with someone?

Interestingly, he didn’t talk about what I might gain from dating or being in a long-term relationship. He talked instead about what I have to offer. It was embarrassing to hear him describe me so positively, especially at a time when I don’t usually feel attractive, engaging, and bright – the brightness of my intellect is often dulled by pain and pain medications – nor do I feel particularly sexy. Feeling sexy is hard when pajamas and sweats have become my standard wardrobe staples.

Nonetheless, I promised him I would think about all he had said to me. And think I did. The first thing I thought about was the person I had started dating a couple of weeks before becoming ill and how uncomfortable I was being so vulnerable with someone I’d known for barely two weeks. As he called the ambulance, stayed with me in the emergency room, and visited me practically every day for the first week of my hospital stay, I was grateful for his support and kindness. However, having someone I hardly knew see me that way was overwhelming in the context of so much unknown. It didn’t feel right to move forward with a relationship. It felt unfair to burden him with that level of responsibility when we didn’t even know each other’s favourite colour or foods.

Thinking about that conversation with my friend led me to deciding I would give online dating a chance. I set up a profile detailing my interests and what I look for in a partner, I posted recent pictures of myself where I look happy and healthy, and then I waited for interested prospects to contact me. I wait instead of initiating contact with anyone who piques my interest because I’m still uncertain about how to explain my current life circumstances. The thought of telling a potential partner about my daily struggle with pain still causes me great anxiety. Although my hope is that those feelings will soon change.

However, being online and exchanging written messages about my interests and who I am, as a lead up to deciding whether to meet in person, has been helpful. It gives me a chance to sort through and figure out who, of all those I communicate with, might be the type of person who would not be phased by what is happening in my life now. It’s also a chance to rediscover the part of myself I’ve neglected because of my pain and better understand how I’ve changed in recent years. Being online also provides a way for me to manage the pace of the process, while making sure I don’t feel too overwhelmed.

I have to admit that, with my friend’s urging, I am opening myself up to the possibilities of what my life could be like, even if I’m never pain-free. I know that not everyone I meet will be as compassionate and open to my situation as the friend I’ve known since I was a child, but now I’m hopeful for the chance to meet someone who is.

Red (Maybe) Tulips Sketch


Can Pain Kill You?

Can pain kill you? According to the responses from my Google search, yes, it can.

Can Pain Kill You

Some days, like today, I feel like my pain might kill me. I know that might sound over-the-top, but if you’ve never experienced debilitating pain, there’s no other way for me to describe it. When I used to get frequent blinding migraines or my monthly menstrual cramps made it impossible for me to get out of bed, I always took comfort in knowing that those pains would eventually end. Now, with this pain, there is never any relief. There is no day on the calendar or time frame after taking medication that I can look forward to because they mean there will be an end to the pain threatening to split my skull open or implode my reproductive organs. The pain radiating from deep in the right side of my pelvis, out towards both hips, down both legs, and up my back has no schedule or half-life to which I can look forward in anticipation of relief.

Some days, like today, the pain is so unbearable; walking, standing, or even sitting still, hurt so badly I don’t know what to do with myself. I don’t know what to do with this anxious energy racing through me that probably adds to the frenetic activity within my nervous system and amps up the pain. I don’t know how to make myself comfortable when I sit because no surface can ever be soft enough against my aching tender skin. While just the thought of trying to rub and massage the hurting parts of myself makes me cringe and nauseated to the point of wanting to vomit.

If the pain, like the type of pain I feel, can kill a person by pushing them to suicide, I can understand why. I’m not, by any means, contemplating ending my life, but I’m uncertain about how long – it’s been three years already – I can live like this not knowing when or if I will get any pain relief. How long can I continue to accept being characterized as a “mystery patient” by my doctors who can’t pinpoint why my body is still reacting, to a growth that is no longer in my pelvis, before it becomes too much to bear? A psychological episode most likely will not be what brings my life to its end. It could very well be the stress of constant pain on my body that makes my blood pressure boil over, causing a stroke, or my blood could become poisoned by the copious amount of opioid pain medications I take, leading my organs to start to fail. Que sera sera…

I know none of this is helpful or optimistic, but this is where my pain sends my mind on days like today when I hurt so badly I don’t know what to do with myself.


Thoughts Often Become Reality

I try to be careful about the things I think. Mostly because I do believe in self-fulfilling prophecies, which an article in Psychology Today explains simply as “a belief that comes true because we are acting as if it is already true.” According to the article, “Our expectation that we will see a particular outcome changes our behavior, which shapes the way others see us. In turn, others provide the feedback we’ve set ourselves up to get, which serves to reinforce the original belief.” The idea that the way a person sees himself or herself affects his or her behaviour and how others perceive them and in turn respond to them is something I’ve witnessed my entire life. It’s also something I’ve experienced, which has influenced the way I conduct myself when interacting with others and the image of myself I project for people around me to see.

How the Self-Fulfilling Prophecy Works - Courtesy Psychology Today

How the Self-Fulfilling Prophecy Works – Psychology Today

The unfortunate thing with believing in self-fulfilling prophecies when you’re chronically ill is that it causes – at least for me – a great degree of added stress and anxiety. Even though I’m extremely ill, I find myself, quite often, trying to act better than I feel even though the chances of that making me feel better are slim. I always make the effort to be well-groomed and dressed when I go out – to make sure people can’t see how ill I really am –, even to doctors’ appointments where I’ve had at least one doctor comment on how well I always put myself together. I know that acting as if you’re not ill when you are may sound silly, but psychologically and emotionally it helps to keep me from falling too deeply into depression. It also helps me not feel pity for myself and rarely gives other people an opportunity to engage with pity for me or to treat me gingerly. However, acting healthy or completely well, when you’re not does take a toll on you; and I think, after just a few days into the visit with my cousins, I’m starting to feel it.

Yesterday, I posted about my cousins who arrived on Sunday for a two-week visit. They’ve only been here for two full days, but my body is already feeling the effects of acting as their host. On Sunday when we got home from the airport, we rested for a few hours, and then I made us a light meal for dinner. Not much for someone who is well but a lot for me. Yesterday, we spent most of the day at home because of the extreme hot weather we’re experiencing at the moment and to give them some downtime to adjust to the time difference and recover from jet lag. Then later in the afternoon, we went out to run an errand that didn’t take very long but involved taking a taxi, briefly walking through the local shopping mall, and a short walk home to give my cousins a chance to see the neighbour and get familiarized with it so they can go out without me when they choose. When we returned home, I cooked dinner for us, not giving any thought to the less-than typical day of activity I’d already had.

Well, here we are today. Not out on the day-trip I had planned for us because my legs, pelvis, hips, and back feel like they are on fire. This was part of the reason I had so much anxiety about them coming to visit. I know this isn’t a self-fulfilling prophecy, but it might be whatever the flip side of one would be. By not acting as if I’m ill and not taking my limits into consideration as I move about every day while my cousins are visiting I will cause myself more pain. Therefore, I have to be willing to admit, to myself most of all that I am ill and can’t do as much as they can do every day. I have to remind myself that there is nothing wrong with taking pity on myself for the purpose of self-care, or having others step in to do the things I can’t because all that means is that I’m taking more care of myself. But most importantly, I have to fully accept that I am ill so that when the extra pain kicks in, as it has today, I don’t get angry with myself or feel betrayed by my body.

One of my close friends who knows me well, especially how hard I find asking for help even when I need it, has taken my cousins out for the afternoon to give me some time to rest. I’m very grateful for his help and unspoken understanding. Being on my own for these few hours, I’m realizing that the longer I’m ill and the more I resist acting as if I am, the harsher the reminders I’ll receive from my body. As often as I’ve said in the past that I accept what is happening to me, it seems that I’m still quite a distance away from that being the reality.


Muse – Resistance



A Fortnight Of Busyness

Last year, when my much younger cousin said she wanted to come for a visit with her young daughter, I didn’t give it much thought because they are cousins from a favoured branch of my family tree with whom I enjoy spending my time. When I agreed that they could come, she immediately started scouring the internet for flights she could afford. As soon as she found one, she booked it and there was no going back.

However, as the day of their arrival approached, my anxiety level increased. What was I thinking inviting them – or anyone for that matter – to come stay with me when I know how limited my activity levels can be because of my pain? How am I supposed to handle daily outings to my city’s tourist magnets when some days I can barely handle going from my couch to my kitchen? Not to mention my body’s intolerance of high heat and the back-to-back weather warnings we’ve been getting because of extreme heat over the past few weeks.

Well, the year flew by and they arrived from overseas for their two-week visit yesterday afternoon. When I saw them walk out of the baggage claim area I was so excited to see them that the anxiety that had built up in me was forgotten. I gave my cousin’s little girl a huge hug, then embraced my cousin tightly. It was four years since I last saw them – not including our frequent video calls. It feels good to have them here, in my home, with me. I have activities planned to cover the span of time that they are here, but I’ve included rest days to make sure I don’t overdo it and land in the ER because of my eagerness to make sure they have a good time.

I know my cousin’s main reason for wanting to visit was to spend time with me regardless of my health, but I don’t want them to go home feeling disappointed in any way because of my limited ability do things. I also don’t want to have to resort to sending them out on their own every day or with people they hardly know because I’m in too much pain to move after a few hours out and about. These are some of the many thoughts that contribute to my anxiety. There are more – worse thoughts – but writing them all down means thinking about them, and I much prefer thinking about two of my favourite people in the world being here, just to hang out with me, for two weeks.


“Fly Away” – Lenny Kravitz