– In loving memory of my mother –

Many years ago my mother asked me this riddle, probably in the hopes of occupying the mind and time of an overly analytical (and maybe a bit precocious) child. She asked me “Do I think that the first bed was invented by a very tired person or a very lazy person?”

For years I would wrestle with this question whenever I needed to fill a dull moment and especially when my mother passed away. It was the memory of how we used to talk and debate that are amongst my fondest memories of her. She may not have been the most nurturing or affectionate of mothers but I rank her as one of the best people that I ever had the good fortune to talk to. As a conversationalist and confidante she will always be missed.

My mother died before I got sick and while I am glad that she is not alive to see me go through these difficult, heartbreaking and endless battles, I do miss the ability to talk to her and laugh with her during the hard times. Thankfully I have several people who are very close to me that are able to assist with this, and I love them dearly for it.

One of  the regrets that I have that my mother passed away to cancer, was that I miss our conversations, she died much too early and painfully and finally I believe that I now have an answer for her riddle.

When we imagine beds we imagine them as being a place soft comfort for a tired and weary worker, we may also see them as a hideaway from the rest of the world for the idle and the lazy, but sadly the other function they perform is that of a necessary confinement for those too sick to leave them. These days I fight for every moment that I can leave my bedroom. I pay for every moment that I am not resting in my bed and even when I lay in my frilly, girly, soft sheets, they provide very little by way of comfort or escape from the pain and symptoms that I share my body with. My bed is not a luxury or a place of idle distraction, it is a my ‘life support’, my hospital, my confinement, my prison, my closest friend, my reminder of my health and my world. I have a love/hate relationship with my bed but there is no where else that accepts me, holds me, feels my pain, hears my tears and I there for me no matter what I am going through.

The answer to the riddle for me is that the bed was intended serve as protector for the sick and unwell as they suffer, as they heal, as they rest and in the final hours before they die, which is why hospitals are full of them and it is where you will find the chronically ill and sometimes its the last place you will see a loved one before they die.

Gentle hugs,

Trish

Years ago, in my ‘other life’, I was a project manager in the I.T. world and worked long hours and on many different projects, sometimes simultaneously and it was a very high stress, long hours, challenging and dynamic role.

With each new project I had to establish relationships, set schedules, meet milestones and deliverables, manage teams and customers, balance budgets, fix problems, do risk analysis, multitask and sometimes the hours were almost staggering. During one very difficult time I clocked over 120 hours in a week. Yes. Three normal working weeks in one week! How? Up until 1 – 3 am with overseas teams, customers, planning meetings, problem shooting and then starting working again at 6 – 7 am local time. And repeat. 7 days a week. It nearly broke me. But for this I was paid well and met a lot of very talented and interesting people all over the world.

Then I started getting sick.

Today I am medically retired from my career but have I stopped working? No. When people imagine me they probably think of someone who sits around doing the odd bit of physio, contemplating life, taking a lot of drugs and resting. Sadly that is the glamorized version. The Hallmark card version of the true experience.

I work harder now and go through more pain, stress, anxiety, risk assessment, meetings, problem solving and multitasking now then I ever did in my ‘career’. That life I had before of endless work, no social life, workaholic, corporate environment is a dream holiday from the life I have now. Here is why.

I am still up to 1 – 3 am trying to get my body to let me rest (meds help, but I cant rely on too many so mostly I bare down until my body gives up with exhausted and lets me sleep. A full body flare means NO sleep at all. I generally sleep only for a few hours before waking, in pain, and doing what ever I need to do in order to get more rest, if possible. When my husband and I finally abandon hope of sleeping and decide to ‘clock on’ its a grueling stretching routine, painful range of motion exercises, massage and meds before I can place a foot on the floor. Next 2 hours is showering and dressing and covering my entire body with a film of coconut oil for vital protection from dryness and infections. Mouth sores treatment and then its time for some walking (zimmer frame) to keep muscles moving and try and cope with balance issues. Affirmation / meditation is a vital part of my mental wellness or I would have probably needed to be institutionalized by now due to feelings of futility and frustration. Lunch? Possibly. Chemotherapy shot and wait for headache, nausea, fatigue.

Now its late afternoon and its time to do some more stretching, reapplying of heat packs, massage, meds, oops! I forgot constant eye lubricating, sipping water, bathroom visits, time for screening up so I can do a little ‘outside’ time. I am now sensitive to light and UV so that means I CAN go outside but not for long and never unprotected. Sometimes Zimmer frame (if I am feeling masochistic) and sometimes wheelchair. I push myself to keep moving. The last 9 months have seen me declining and several relapses, so I must keep trying. Keep pushing.

My ‘team’ include Me, hubby, Fur kids, Primary health Care provider (GP), team of specialists (Rheumatologist, Ophthalmologist, Neurologist), OT, Physio, Biologic nurse, the man who injects my joints with steroids (He is nice but he hurts) Hospital nurse, Vampire nurse (monthly blood screenings), Hospital MRI and Neurology department and finally Chris the Chemist (Yes, we know his name and he knows us intimately). I ‘manage’ none of them. Mostly they all work independent of each other and sometimes have no idea what each other are doing and sometimes even give conflicting advice. What I do is more like navigating them.

Evening can be worse, depending on the ebb and flow of the day and how much disease activity is going on. I don’t manage these diseases, they have a mind of them own. I share my body with them. I do anything I can to minimize its ability to take me over entirely. I follow a strict diet. I don’t drink. I don’t smoke. I try to avoid stress and infections. I take vitamins, steroids, chemo, biologics, immune-suppressants, pain relief and anything else that might bring me closer to living stronger and slowing down the slow eating away and damage that has been going on in my body for over a decade. It is now systemic and has attacked every organ and part of my body from my brain to my toes. In between I must fit in bits of life and show no trace of this to the rest of the world; they don’t understand. They can’t. Its all too hard to comprehend. Try and get hair done, meet up with a friend. All of this can must be added to the struggle. There is no such thing as a pain free moment.

I have met some wonderful people from all over the world that fight their own versions of my diseases and wrestle with the fact that we have this fight for the rest of our lives. I interact with them and connect with them and we try and keep each other afloat. Sometimes the hardest battles are with the ‘other world’. The world of the healthy. The world of the ‘I don’t understand what is wrong with you and why you are never going to get better’ world.

We feel tired, forgotten, misunderstood, lost, unwanted, guilty, sad, angry, grateful, frightened, confused, in terrible pain, anxious, frustrated, envious, out of control, betrayed, dehumanized and hopeful. Sometimes all of them at the same time.

So since ‘retiring’ the hours are longer, the conditions are so much worse, the days are harder, the problems unsolvable, the project is unending, there are no holidays or days off, no leave and no minimum wage.

Not everyone who stops working or retires is enjoying the good life, but we are trying to make a life out of what we have and who we have in our life.

Gentle hugs,

Trish

I have never thought of myself as inspirational, worse off, special, or wise.

I see myself like anyone else, doing whatever I can do and need to do to survive.

Gentle hugs,

Trish