When your side-table is a drug store

“I don’t feel so well today. Being chronically ill is so draining on the body, mind and soul. Exhaustion makes my limbs feel like lead. My heart pounds erratically. I cannot keep my eyes open and yet I cannot sleep. A thousand thoughts race through my mind every minute and that is just the physical battle.

The blood pumping through my veins hurts. My joints seize and my head aches. I have recently gone through two biological treatments, which help a lot in the long run, but recovery is hard. My immune system is debilitated by the meds and the little “soldiers” sent to fight the disease make my body hard to live in. I try to take in air but my chest closes like it can’t manage the effort. If only tears would take away the pain. If only rest would come and tuck itself around me enveloping me in peace and tranquility.”

In my many years of being chronically ill I have experienced the lows of a darkened pit and the highs of a brightly lit sky. Many talk of the “invisible illness.” You can look perfectly healthy on the outside but inside festers the agony of pain and exhaustion. An indescribable exhaustion that seeps into your entire body and gives new meaning to the saying “bone -tired.” Nausea, headaches and all the other struggles your body has as it tries to keep you going become a part of everyday life.

But it’s not just the physical symptoms that you contend with but the emotional ones too. Depression, fear, sadness, a mourning for the life you once had. Isolation grows as your inability to engage in the world diminishes. It becomes a harsh reality of finding out who is really there and who is not. There is a deep sense of the loss of who you once where.

Medication also becomes an integral part of your daily routine. I have always hated having to take medication but now my side -table drawer looks like a dispensary. Most mornings I wake up unable to get out of bed until I have had my pain meds from my dispensary drawer.

Then you get the doctors. The long list of specialist visits, tests and treatments. Most of my doctors have been good. My main specialist has been supportive, caring and works very hard to keep my quality of life as close to normal as possible. Unfortunately you get those who are not so supportive, or helpful, or in some cases even civil. When I had an extremely large DVT last year my doctor was downright awful. He had spent no longer than 5 minutes with me, briefly glanced at my chart and proceeded to call me a drug addict. He knew nothing of me or my story but felt he had the right to pass a blanket judgement on me.

This all sounds very demoralising and depressing, and I won’t lie, it can be. Fortunately for me I have been delivered into the “dome”, which I spoke of in me very first blog post. It didn’t happen quickly and it has definitely not been easy but I have found a world of people whose love knows no bounds. People whose strength and determination to help me have pulled me through some of the toughest times of my life.

I think that this illness has been a double-edged sword. It has brought pain and suffering and darkness but at the same time has delivered me into the light. I do not want to be sick, I do not want to have an incurable disease, I never will, but what I will do is cherish the gifts I have been blessed with. I will try to hold on tightly to the lessons that I have learned and continue to learn and I will cherish the souls that walk with me.

I pray every day that I will get well, that I will wake up one day to a cure. I also pray every day for those around me facing their daily struggles, often silently, and I pray for those whose love and support I could not live without. I am in awe of their unconditional care.

Many things happen in a life time, some of them good and some of them bad. Many of us think that we are alone but I don’t think it has to be that way. Everyone has struggles, everyone has a story, and we can help and support each other through openness and honesty – and one of the hardest lessons I have had to learn – trust. As I have been taught and will continue to learn – shine light into the darkness and it will disappear. Darkness has no place where there is light. Life will not suddenly become a walk in the park but at least we will not be walking alone.

Teddy bear hugs

Tonia