Living with multiple illnesses is like constantly tiptoeing around nicely placed rows of dominoes hoping everything remains in place. As soon as one domino is knocked, the whole system starts to collapse.
The abdominal pain causes a severe mental illness episode. This occurs on a week my hormone levels are all out of sync because of the delightfully rarely known condition called PMDD, and all of a sudden I am in hospital. The stress on my body causes my disability to play up, and suddenly I am finding it difficult to speak, and move my hands and legs. All this occurs in just two weeks. My coordination slowly comes back again, but not to the same level as before. So I am even more unsteady on my feet, placing me at a higher risk of breaking those brittle bones. Oh the joys of having multiple illnesses and disabilities, where one condition effects the other.
I get up each day not knowing what illness is going to need the most attention that day. Have I woken up with cramps in my neck that over the day will grow into a migraine causing me to vomit throughout the day. Are all my muscles cramping more than normal because of the colder weather. Am I unsteady on my feet, and going to be stopping myself from falling over all day. Is my mind stable or am I suicidal. Are my hormones at a level where I am sensitive and will take whatever anyone says to me as rejection, and that they want me dead. Am I doubled over in pain in my abdomen, and which condition is causing that pain. Are all my joints screaming out in pain, making it uncomfortable to lie, sit or stand or can I function today. Is this coming from my conditions or am I coming down with another short-term illness. Or do I have a broken bone, which completely throws everything out the window, as I can’t exercise or drive to my appointments. These are just some of the scenarios I face each and every day.
I go to different specialists and allied health professionals, and they too are confused by the conditions and symptoms I’ve presented to them. They too have no idea what is causing what, and are sometimes left in bewilderment as to what to test or treat or just what to recommend. Other doctors are full of so much confidence in their suggestions as to what treatment will work, until I come back and inform them that in fact their treatment has made another condition worse. The medication and painkillers caused suicidal thoughts. The change in my diet causes partial bowel obstructions. The exercise caused the muscles in my neck to cramp leading to a migraine. The change in diet again to reduce the bowel obstructions has sapped my energy and made me more susceptible to mental health issues. It leaves all of us wondering what issue do we address first? What is more important reducing pain or dealing with suicidal thoughts? It leaves me wondering each day, what do I eat? What condition do I want to contend with today? Do I want pain or do I want to battle my mind?
You know that the simplest of things such as a balanced diet, exercise and sleep will be a tremendous benefit to your body. But even these three simple things in life are affected by the multiple illnesses I have. My diet is so restricted because of various conditions. My disability makes it difficult and painful to exercise. Sleep, oh beautiful restful sleep that is so needed and important for someone with a disability, a mental illness and an autoimmune disease is effected by PMDD, which causes insomnia. My body is so fatigued because of the additional energy required for a person with a disability to move, not to mention the weariness of fighting a mental illness, as well the fight that goes on in my immune system. But that desperate need to sleep on some nights is not fulfilled.
For me getting out of bed each day to face the physical and mental pain I am in can be challenging. Sometimes though being in bed causes more pain than being out of bed. Although I am desperate for rest, my joints can no longer handle lying down. I have faced another sleepless night, and as a result my mind has travelled into negative thoughts central station and remained parked there for a good couple of hours. Getting out of bed, and ignoring the overwhelming need for rest seems like the best solution to distract myself from the busyness of negative central station, and hope that sitting or standing will remove some of the pain in my muscles and joints, hopefully giving me a few hours of reprieve from searing physical and mental pain (and that’s on a good day).
These are some of the dilemmas those of us with multiple illnesses and disabilities face on a daily basis. We are walking a very thin tight rope and trying to balance very precarious situations, and if something drops, we can find ourselves holding on with one hand to that very thin tight rope called life. But this is not just for a season or a brief period of time, because for us these conditions are lifelong, and this is what we will face each and every day of our lives.
I’m aware that reading a post like this can make it sound like there’s no hope. But when the dominoes start falling one by one we need to look up to our source of hope. The One who keeps us and helps us.
I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth.
He will not let your foot be moved;
he who keeps you will not slumber.
Behold, he who keeps Israel
will neither slumber nor sleep.
The Lord is your keeper;
the Lord is your shade on your right hand.
The sun shall not strike you by day,
nor the moon by night.
The Lord will keep you from all evil;
he will keep your life.
The Lord will keep
your going out and your coming in
from this time forth and forevermore.