Many of us in SparkPeople suffer from a debilitating chronic medical condition – many of us from several. We can sit back in shock or disbelief and wait for the end; or, we can get over the shock and disbelief and carry on as best we can. No one wants to be around a person who has given up or is angry and disillusioned – even ourselves. Life handed you lemons – deal with it as positively as you can. You will have bad moments, even days or weeks when your condition makes dealing with life seem impossible – we all have those times. It's how you recover and carry on that matters.
Maybe your mobility has been taken away or diminished in some way. “Use it or lose it” – remember that saying? Even with restricted mobility you can try to move. If you don't try you will never move again but if you try, perhaps you will and in most cases, the more you try and practice, the better will be your outcome. Maybe you find your stamina isn't what it used to be or your strength has weakened. Just as with mobility, work at it. You will never know what your limitations are unless you try to accomplish things.
When I was first diagnosed with my Congestive Heart Failure, I couldn't believe it. What was this? I already had Crohn's Disease with allergies and Rheumatoid Arthritis. I also had Obstructive Sleep Apnea and Restless Leg Syndrome. What had I done to deserve this? Why me? Why now? What was I to do? How could I go on? The doctors in the Emergency Department at the hospital simply sent me home with a prescription for a water pill, told me to get lots of rest and advised that I see my physician in the very near future. Was life as I knew it over? Was I to lose my independence? What would my relationship become with my new husband? Would I ever work again? Would I ever walk again unassisted?
I remember asking my Dr. what it was all about and being told my heart simply wasn't functioning properly – not how or why. When I asked I was told they didn't know and I should get lots of rest and take the water pills. I laid about for approximately a month until I was heartily sick of my situation and myself and with the worry on the faces of those nearest and dearest to me. Something had to be done and I had to do it. Physically I couldn't do much – heck, I needed help bathing and dressing myself. I wasn't able to do housework or work in my beloved gardens. But most of all, I wasn't able to accept the diagnosis and treatment for what ailed me.
I went back to the hospital and I answered their questions in a way guaranteed to get me notice and further study. It took a week of study and tests but finally the root cause of my troubles was identified – not the why of it for sure but the how of it and treatment was mapped out and planned. I had a condition known as Dilated Cardiomyopathy most likely caused from a flu virus entering and damaging my heart muscle causing fatigue and shortness of breath. My heart had become unable to pump enough blood back to the lungs to be oxygenated and it flopped about in it's efforts to do so. I was sent to expert Cardiologists and became part of a study at Toronto's Sunnybrook Hospital called the RAFT study. As such, I was given an extra wire in my heart when they implanted a Pacemaker/Defibrillator combination in my chest. It was hoped that this extra wire would help heal damaged hearts. In my case, my heart ejection refraction rate was 28% at the time of implantation and by the end of the 4 or 5 years study it had improved to 55% (with 60% being normal). By taking the upper hand and not accepting the limited prognosis I had been given, I had become pro-active and had taken a major role in my recovery. I was learning and teaching those around me that I'm a survivor and happy to be one.
I remember asking my doctor how much exercise I should have, how much of this I could do and how much of that I could do. I was dissatisfied with his answer of “whatever you feel you can do.” What advice was that? I wanted to know my limitations. I was looking to the wrong person for that answer. The answer was in me.
At first, I found I had little stamina, little strength, and I could do few of my usual routine things. Just getting myself ready for the day wore me out and sometimes defeated me. But, as time wore on, and I continued to try to successfully groom and dress myself and make the bed, etc. I was able to do it better, in less time, and with less effort. Each small accomplishment felt like I had made it over a hurdle.
Once I was able to do these tasks I moved on to others until I was able to walk to the end of my driveway, then the end of my street, then a few blocks away. I learned that I could do some of my housework and gardening but I had to learn smarter and easier ways. I learned to compensate and overcome.
I don't carry laundry baskets up or down the stairs. At times I'm fortunate to have a family member do it for me but when I find myself alone and in need of doing so, I bump the basket either up or down and once on the new level, use my legs and feet to move the basket rather than bending over and picking it up. I don't strain myself lifting what is now too heavy for me and I don't get as short of breath as I would carrying the load. I don't vacuum the whole house – I do a room at a time resting between. In this way, I don't wear myself out so that I can't continue and I don't get dizzy or sick to my stomach from fatigue. I don't weed all of my gardens in a day. I weed all or part of a bed and take a break. I don't always bend and stretch as I used to to do that weeding. I often sit on my butt and scoot along the edge of the garden reaching what I can from my sitting position to avoid vertigo and losing my balance. I can once again, with caution and care, go grocery or clothing shopping, go for walks, clean my house, work in my garden – those things that were once routine that had become major challenges.
During my learning process, I went through denial and grief. I experienced fear and anger, frustration and despair. But, as I tried more and more, I felt relief that my life wasn't over and my way of life wasn't over – it was changed and with a little effort from me, evolving into a manageable way of life. I became proud of my accomplishments, pleased with my efforts, excited to try more. As I did, so did those around me. As I said earlier, there are still moments and even days when my conditions make it seem impossible but I've learned that those times will pass and one of my favourite sayings has become “this too shall pass.”
There may be setbacks and you may find yourself starting the process over again. If so, remember what you already learned and make use of the resources you already dug up and used and make use of them again. In my case, I was diagnosed a few years later with Type II Diabetes, and later with Osteo Arthritis, and later still with Cough Syncopy. Now, almost 10 years after the Congestive Heart Failure diagnosis, the damage done to my heart has caused a further complication with time and I now have a leaky heart valve. My ejection refraction rate has once again dropped and wavers between 18 and 30%. I asked my Cardiologist to pursue the issue and not to just monitor it and I now have appointments at Sunnybrook Hospital to again see experts in their field – a Cardiologist and a Cardiac Surgeon – to see if the leak can be repaired with a clip, hopefully with a new innovative procedure but if not, with open heart surgery. It is my hope that if this repair can be accomplished, I will once again recover to a point that I can reach the quality of life I had worked so hard to obtain before.
I wake up in the morning and I'm reminded of a favourite saying of my husband's when asked how he is and he replies “at least I'm on the right side of the grass.” Not only am I “on the right side of the grass” I have an opportunity to see what I can do that day. I remind myself of what I have to be grateful for when so many others are so worse off than I. I hate having to start my day off with a daily weight check followed by about 20 some pills both medication and supplements, and with a shot for glucose control. I don't like it any better when I have to take more medications before my noon or evening meals and by the end of the day when I'm taking the last of my 60 some pills for the day and taking the last 2 shots of the day, I'm relieved it's over for another day. I have to take glucose readings throughout the day at random times making schedules difficult. I have to monitor the nutrients in my food, plan my meals ahead of time, and log what and how much I eat. I have to try and balance a diet that is good for my heart and Diabetes but that won't upset my Crohn's when it is active - a very difficult and complex task. I know, however, that without these inconveniences, my efforts to win the battle would be futile and it makes having to take these things bearable. They have become tools as I work my way through.
One of the best tools I have found is SparkPeople. Apparently I signed up in 2008 or 9 but I have no recollection of that and obviously didn't look into it fully. As I learn more and more and participate more and more, I am finding it an invaluable resource and tool. I track my glucose levels and my blood pressure levels, I track my nutrient intake and my exercise accomplishments. I read articles, blogs, and postings. I write blogs and postings. I watch videos, try recipes and exercises. I am sparking and helping others to spark and making new friends every day!
There is another important feature to making every effort to live life to the fullest. Attitude. It's fine to sometimes get depressed or upset over your circumstances but do you want to remain that way? Do your family and friends want to be confronted with your defeat day by day? No. Life has given you lemons, grin and bear it, but do more. Find some positives and give yourself rewards as you accomplish things. Look for the humour in a situation and laugh at yourself and with others. Realize that life goes on and how much you get out of it will depend a lot on how much you put into it. It may not be the life you have been used to but it can be a good one none the less.