Finding the Strength
by Barbara Smith
Life started out pretty happy for me. I was born in 1962. I was an only child and was pampered. I still remember the pretty princess dresses my mum dressed me up in, and the photographs taken at a studio. I remember my mum being pregnant with my brother, and how proud I was that I was going to be a big sister. Life was good then, and I hold those memories dear to my heart.
I was six when my brother was born. Shortly after his birth my mum was put on a new migraine medication. She suffered from severe migraines, which would have her vomiting for days at a time. We had to keep the house dark and be really quiet when she had one of these migraines, and she got them often. Unknown to any of us at the time, this new medication made my mum psychotic. It took me over three decades to find this out, after a lot of researching and putting two and two together. While she was on this medication my mum was physically and mentally abusive to me. I could never figure out what triggered an attack, and they never made any sense to me. The things she said or thought made absolutely no sense. I never knew when she was going to fly off the handle. Sometimes it was when I came home from school, sometimes she would haul me out of bed in the middle of the night. I just never knew what to expect. What I do know is that I became terrified of going to sleep, terrified of my bedroom door banging open and being hauled out of bed to be beaten in the middle of the night. I started becoming a restless sleeper and I began sleepwalking. This was a daily thing until my mum went off this medication when I was about 11 or 12 years old. By this time, the damage had already been done. I remember feeling very lonely, feeling unloved and that my mum really wanted a boy instead of a girl. But I became even more confused after my sister was born a year later and neither of my siblings was treated the way I was. I harboured a deep resentment towards my mum and began to wonder if, perhaps, I wasn’t my mother’s biological child. Of course, this experience coloured my view of my mum and created a hostility and mistrust that lasted until shortly after my dad passed in 2008.
I started getting sick when I was about 12 or 13. I started having trouble keeping anything down. After several months of this my mum finally took me to the doctor and I was diagnosed with a “nervous stomach”. I was put on pills to settle my stomach and things seemed okay for a while. But this was just the beginning of things to come. I now know that, for me, vomiting is one of the first signs that I am suffering from sleep deprivation. When I hit my teens, I was always tired and couldn’t seem to keep up with the other kids. I just seemed to tire faster, to need more sleep than others, and I caught flu bugs and colds more often. Of course, this was blamed on puberty, etc. and just left at that.
I left home when I was 18. I constantly complained to doctors that I was tired, often needing a two-hour nap after work. On weekends I would sleep 13 or 14 hours at a stretch, and still needed a nap later in the day. At first, I was told it was because I was still young and growing (especially since I didn't hit puberty until I was 16), then because I had small children, then finally, I must be depressed. I don’t know how many times I heard “you are fine” or “there is nothing wrong with you”. I started becoming ill more frequently, seeming to catch every cold and flu bug that went around. Not only did I get sick, but I was always sicker than anyone else. Every bug wiped me out for days, or sometimes weeks. When we bought our house, I was exposed to mould (which I later found out I am extremely sensitive to). Then I started getting bouts of tonsillitis almost monthly (which I never had as a child), along with urinary tract infections and severe constipation.
I left my first husband (who was also mentally and physically abusive) just before I was 30 and developed an “I’ll show you” attitude with the doctors. I figured that if I tried to maintain the kind of life that everyone else did, something would give, and the doctors would finally realize that there was something really wrong with me and that I wasn’t a hypochondriac. Little did I know how bad that first crash would be.
So I went back to university full-time while looking after two small children. They were five and three when I left my husband and were about seven and five when I went back to school. My oldest suffered from undiagnosed Asperger’s Syndrome, and my youngest was diagnosed with mild cerebral palsy when she was six months old. My son exhausted me. I constantly had to be thinking two steps ahead of him, and every year was a battle with the schools to get him the education he deserved. He was finally diagnosed when he was 21 and I was so relieved to know that there was a name for what he had.
My daughter required daily physical therapy, which I did at home. As she became older, she was put in swimming lessons and I used to take my kids on daily biking trips so that my daughter’s muscles were kept limber. When she was first diagnosed, I was told she would never walk. With the physiotherapy that I did, not only did she walk, but she placed third in the county track and field meet when she was in sixth grade.
I was in my third year of university when I crashed the first time, becoming totally bedridden within months. I fought the inevitable, but my body finally gave out on me. I was beyond exhausted. I had difficulty sleeping at all, and when I did sleep, I wasn’t refreshed. Walking became extremely difficult, each step requiring an enormous amount of energy, and often my legs just didn’t have the strength to support me and I fell. I have tried to explain this to others and the best analogy I can come up with is likening it to a car running on gas fumes. When those fumes are gone, there is nothing left until you have the money (or proper sleep) to fill the tank again. I feel like I have run a marathon, and have nothing left to give. I became reliant on my 12-year-old daughter to do all the chores, including the banking, grocery shopping, cooking and paying the bills. My bed was my living room couch, where I could monitor the kids and be there if they needed me, my contact with the outside world was my computer, and my once sharp mind became filled with cotton balls. Over time I adapted, learned how to use a calendar and check it numerous times a day and started making notes weeks before I went to my doctor appointments, so I wouldn’t walk out thinking “oh, I meant to ask him that”.
I was fortunate during this time. I was referred to the university psychiatrist because at first, they diagnosed me with rapid cycling bipolar disorder. I would get two to three months where I slept very little and was hyperactive, then I would crash and sleep a lot, with little energy. The psychiatrist at the university was wise enough to send me for a sleep study wherein they found the underlying problem. The sleep specialist couldn’t believe that my sleep quality was as poor as it is on an ongoing basis, and did eight to ten different sleep studies. The end result – I suffer from rapid eye movement (REM) sleep deprivation; I get very little restorative sleep, and I rarely, if ever, get rebound sleep. His report: I would have to adjust the expectations I had of my life, because it was never going to be “normal”.
Then the pain started. The most horrible, excruciating pain that I wouldn’t wish on my worst enemy. It is like every molecule in my body is vibrating on a different frequency. If someone walks by me and stirs up the air, it hurts. Clothes hurt. I wear leggings because I can’t stand pants or jeans hitting my legs every time I move. I can’t wear polyester because I sweat profusely. And my temperature regulation is off. One minute I will be sweating like crazy and the next I am freezing. My doctor at that time wouldn't give me anything for pain and I just went downhill. I didn’t live, I existed and literally felt like I was dying. Of course, the diagnosis of depression came up often and I fought it every time, telling the doctors to fix whatever was wrong with my body because mentally I was fine. Yes, I was angry, but at least now I knew something was very wrong.
In 2000 we moved cities because a so-called friend said she would help me. That lasted about four months. But thankfully, the move also brought a new doctor, one who was willing to work with me and to research what he didn’t know. We started off slow, trying different medications for the pain and for sleep. We discovered that I can’t tolerate a lot of medications, but he worked with me (and continues to do so) to find the right combination that works for me. At one point in time he told me I was the worst case of Chronic Fatigue Syndrome (the term used here in Canada) that he had ever seen. Thanks to him, I was able to come out of the wheelchair after about eight years, and I was managing. I will never be able to work again, and I have accepted that. I have a very small energy envelope and I have learned that if I can stay in that energy envelope each day, I can manage basic daily living, except for showering, which totally exhausts me. I can’t do a lot. I sleep 11-12 hours and rest most of the day. I don’t start doing anything physical until the evening, when I have a good idea of how much energy I have left for the day. Most days it is none, but I get the odd day here and there where I can do a bit of housework or something else that requires more physical energy. I have hobbies that I enjoy and dogs that I love to walk with my wheelchair.
I run into problems when something unexpected happens, where I can’t plan out my time and rest like I need to. This last crash was triggered by a sudden move just over a year ago. We were given one and a half weeks to pack up and move to a new apartment. It just wasn’t enough time for me, as I ended up packing most of the day for that one-and-a-half-week period. I was back in a wheelchair again within a month and I know it is going to be a long time before I am out of it. And I still haven’t finished unpacking from that move. Couple that with a herniated disc in my lower back last July and now a temporary move for three weeks and I am just overwhelmed. The back problem has hampered my recovery, and no one seems to understand that it takes a lot longer for me to heal from these things. I get a lot of “you should be over that by now”, which is really frustrating because I want it to be over! I also get a lot of “there is nothing wrong with you, you can walk”. But people can’t comprehend that every step I take is an effort to stay on my feet and the more steps I take, the harder it becomes. I want to cry, but just don’t have the energy to expend on that emotion. I learned a long time ago that negative emotions are more energy consuming than positive ones, and if I want to be able to function day to day, I just don’t have the extra energy to expend on things that aren’t positive.
I think what frustrates me the most is the lack of education, knowledge, and support. How do I explain to someone that, even though I have slept for 11 hours, I am exhausted? How do I explain that my body is so physically exhausted, my legs won’t support me? Or that my system is so sensitive to chemicals in the water and smells? How do you tell someone that sounds are excruciatingly painful and exhausting and that lights are like jagged knives? Or how the very air we live in can be so painful it is nauseating? Or that your Irritable Bowel Syndrome is so bad, you can’t leave the house because you never know when you will need a bathroom? Or that it takes two hours for you to be able to get moving in the morning because 1) your pain medication needs to kick in, and 2) you are so stiff and sore it is extremely difficult to move? Or that it took a week for me to write this because I can only focus for small amounts of time during a day, and some days not at all? Or that oftentimes I can’t remember if I have taken my medication, and have to count the pills out to see if I did? How do I tell someone that this has turned my life upside down, that my children accuse me of being abusive because I was extremely ill, even though I offered to put them in foster care numerous times because I knew I couldn’t care for them? How do I tell someone that what they see on the outside is far different to what is going on inside, just because I choose to put on a smile? How do you explain to people that you actually CAN be tired and NOT able to sleep? Too often I get “well if you really were tired, you would be having a nap”. And lastly, how do I get agencies to pay attention and give the help and support that is needed, even though I am not 65? All that I qualify for is help with showering once a week, but that doesn’t even touch what actually needs to be done.
I will turn 56 this year and have just had my doctor sign a DNR – do not resuscitate. When he asked for my reasoning behind it, I simply said that I struggle enough just to live every day. I don’t want to have to deal with another health complication. I already feel like my body is dying a slow and painful death, so when my time comes, just let me go peacefully into God’s waiting arms. I have been living with this for over four and a half decades and I am just so, so tired.