• MissyD - A New Sufferer

    I have read a number of stories here already and I am encouraged by the fact that there seems to be some hope I will see some improvement. I have only been sick for a couple of months and so I don’t even meet the diagnostic criteria for CFS ME, but there is no doubt in my, or my doctor’s, mind as to what this is. Like most of you, I know the exact time when I got sick. I have always been a real handywoman, and have been remodelling our basement to make an apartment. On Saturday September 8th 2007, I went down to carry on with my work. My partner had been bugging me to “get on with it”, but I had to come back upstairs.

    “You’re not going to believe this”, I said, “but I think I’m coming down with the flu. I’m too sick to work. I know you might think this is some artful dodge to get out of working today, but I feel awful”. Well, you know the story, I just kept feeling awful. I struggled to go to work the following week, and twice came home early. I couldn’t go to work the next week, and after that I booked an appointment with my doctor (always a lengthy process as we live in an “under-serviced” area in Northern Ontario) and started looking on the internet to find out what could be wrong with me. I checked out everything, but of course I ignored all the entries for CFS, as I knew there was something really wrong with me, not some bogus old lady hypochondriac syndrome.

    Finally, I got tricked by some website for some other “real” disease, and there it was, my symptoms EXACTLY described. “A Virus” I saw my doctor, armed with my diagnosis, and he just laughed at me. “You just have a virus”, he suggested, “and you’ll be right in no time. Rest, take Ibuprofen, drink plenty of fluids.” I knew he was wrong. I have suffered from viruses all my life and this was different. It was lasting too long. I did rest, and did feel quite a bit better and got back to work. Some days I felt under the weather, but I coped. I tried to return to normal activity and I actually started to buy into the “virus” diagnosis. Then WHAM! The symptoms were back with a vengeance.

    In my case this meant a terrible headache, sore glands, aching joints, crushing fatigue and that horrible foggy brain. I knew things were really not right when I started filling the kitchen sink to do some dishes, and just walked away. The sink overflowed for about an hour before I came back! (Remember the apartment downstairs?) I have broken 2 teapots, and I don’t know how many drinking glasses. I saw my doctor again. “I think you have CFS” he wisely concluded. Thank goodness this disease has some credibility now, and that my doctor did recognize it. I don’t know how you brave people dealt with the disbelief, the diagnoses of depression etc.

    I have always been unbelievably active. It actually has been part of my self-identity. “Look at her, she never sits down”. For the past three years I have been building a lakeside house (pretty much by myself) where we had dreams of retiring to. It’s now about ¾ done, but needs a lot of finishing inside. I have been making this apartment. I was working. We have two dogs, and I was always out for a walk or a run with them. In my life I have completed 10 marathons, including Boston. Now I am useless! I don’t know how I am going to finish the apartment – I’m thinking we will need the income. I don’t know if I am going to finish the house. I don’t know if I will be able to get back to work.

    I don’t know how I will cope with this. I am blessed in that I have a loving, supportive partner, and we are economically ok (not great mind you, but ok). But, she is almost 60, and suffers from arthritis herself, so I was always the one who did the domestic chores. I have always been able to “power through” adversity. For example, in the marathon, you just bear down, ignore the pain, and push on. In my life, I always just “worked harder” when faced with a problem. My strategy fails me now. I have to say, I am NOT dealing with this yet. I still feel like I should be able to “just do it.” I can’t. This is such a cruel disease. I know in my head that I can’t fight this, but my heart hasn’t quite got it. I am NOT coping. I cry. I get angry. My doctor is referring me to a specialist in Toronto, but she is booked for almost a year.

    I don’t know what to tell my boss. I’m an adult educator, and I know that she would be happy to just have me part time, but I don’t even know that I can commit to that at this point. I HATE BEING UNRELIABLE. I HATE BEING A USELESS BLOB. I HATE THE THOUGHT OF PEOPLE THINKING THAT I AM A LAZY HYPOCONDRIAC COW. I hate the idea that I had to write this story in stages and then cut and paste, because writing a short story is too much. I hate daytime TV. I hate that there are people who are much worse off than I am, and that I am wallowing in self-pity and anger. I hate the fact that I don’t have a plan anymore; I’m not used to flying without a flight plan. I hate living one day at a time, and I hate being tired, aching all over, and having a foggy brain.

    I am writing this I suppose to “get it out”, but I also hope that some other newbie will read it and feel a bit better if they are feeling the same way. It sure helps to know that others walk the same path. It helped me to read other’s stories and know I am not some kind of a freak. In spite of my despair right now, I am basically an optimist and I know that I will learn to cope (that is my brain, not my heart speaking right now) and I believe all things happen for a purpose. I suppose I already have a newfound respect for all disabilities, and I suppose I should be thankful for that gift.