Living with Chronic Illness – What Does It Feel Like?
In this post, I am trying to explain what having my chronic illness would feel like for someone who isn’t sick, but fit and healthy.
Returning to consciousness this morning, the first thing I noticed was the pain. My right temple was pulsing. Throbbing with this ache. It was not a surprise. Every morning starts with the realisation it has not cured overnight. Another day will start the same was it has for the last 4 years. Other than this, I felt normal. Nothing else seemed to separate me from being like the average person. I love this time of the day. I feel normal.
The day has to start, so after taking time to wake up I prepare to get out of bed. This reminds me I am not normal either. My right leg appears heavy. This has, over the years become worse. The invisible weights become heavier. I hobble out of bed, and head for something to eat. The day starts.
The reason I am writing about this is I am trying to see if I can find the words that can explain what having a chronic illness is like. How can someone who is fit and well understand the obstacles I face every day? This is difficult, as it is part of who I am, and my way of writing is completely subjective. This is an attempt at being objective, in an attempt to help understanding.
Starting with the pain I have in, or on, my head. There are three different sensations. The first is a throbbing ache. Remember the time you stubbed your toe or hit a finger with a hammer. Just after the initial shock, there is a pulsing ache, like the beat of your heart, that with each beat, comes pain. Usually, this subsides when your body and mind realises your toe will survive. The throbbing slowly disappears. For me, it hasn’t. The pulsing has remained constant. This has a pain level of 5/10. The worst is an 8/10, and that usually happens when I am concentrating on something, or if I am tired.
On top of this, my head feels like exploding, as if a pressure building up inside needs to be released. Varying in intensity, but continuous. Then there is the stabbing pain. Like a sharp knife that is slowly being pushed into my head. This is always sudden, arrives without warning, and pulls me away from everything else. My whole body flinches as my head tries to find a way of escaping from this.
These three symptoms have implications for my ability to concentrate and understand. Combined with the sensitivity to sound and light, the simple everyday activities that we take for granted become tasks that I avoid. Shielding myself from negative consequences.
Walking is something we take for granted. In those first days when we learn how to stand on our feet and find a way of moving that doesn’t use our hands, it is exciting. You can see the smiles of joy on young children who have found that freedom that comes from this simple act. Now, I am using my hands to help me walk. Either they are occupied by a walking stick, or searching for some easy support in the house.
I describe it as if my leg is being held back by some invisible bonds. They are stronger on my right leg, and this makes my gait unbalanced. My head expects them to act in accord, but the message doesn’t arrive at the same time to my lower limbs. Imagine that you are at the gym and you have done leg presses, but only exercising one, using the heaviest weight you can manage. After a period this leg tires, and it cannot perform the way it did when you started. This is what my right one behaves like at the start of the day. As time wears on it gets slower, and heavier, and the effort seems Herculean just to get it to move. Stairs become Mount Olympus, and I look to the summit with fear I will never ascend.
My right foot has decided that remaining perpendicular to my leg is only for those who will bend to the will of the mind. Making a decision that a relaxed and carefree life is better, and now I use a strap to hold it in a more normal position. Without this aid, I fear I will topple over as this wayward foot trips me up.
This is the curse of many chronic illnesses. Multiple Sclerosis and ME are two that suffer from this total deflation of energy. Every morning, as my brain starts to function, I realise that my sleep has not recharged my batteries. Even though I am in bed by 10, and it is rare that I get out of bed before 9 the following day. Eleven hours horizontal should give my body enough time to rest. However, there is a war waging inside. The nerves that are being damaged, are also being repaired, and the energy needed is more than I have.
Some liken it to a rechargeable battery that is nearing the end of its life. No matter how long it is charging it never gets beyond 50%. As it gets older, this percentage diminishes to the point that the battery is replaced. I don’t have this luxury. Somehow I have to survive on what I have. For now, I would rate my maximum charge at 60%. On days when I have to get something done I run into deficit, and so for the following few days, I have to replenish the energy I stole. This is costing me more all the time, and planning and pacing have become vital.
Yawning constantly, and that grit you have in your eyes when you are so tired, are everyday feelings. This is my ‘normal’. Maybe it will change, but now it is real, it is my present.
These three symptoms I have every day also interact with each other. If I do not take care of all three, equally, then the symptom I don’t manage will bring the rest to this new level. More fatigue means slower walking and more painful headaches. The necessity of managing these three recalcitrant aspects of my life is emotionally and physically draining.
So I have learned to respect each of these, and to find ways of adapting how I live my life so I release the strain. Loads of rest, good nutrition, exercise to the level of my capacity and the most important respect for my mental health. Daily meditation and journaling have helped me to live alongside these obstacles (See my post on Meditation). They accompany me in this adventurous life of mine. Constant companions, yet somehow I have remained independent. It is difficult. Frustration and anger are always close to erupting, and sometimes do, but I continue the fight.
What will happen in the future? I don’t know. So, for now, I am focusing on now. This moment. Enjoying all I have and grateful that I have the capacity to still enjoy some of my life.