I’ve often argued that the quest for a diagnosis is worse than having a diagnosis. The thought process behind this was that when you have a diagnosis, then you know what you have and can therefore treat it and move on with your life. The quest, however, has you in limbo for a long time. I still agree with this. I believe that the search for a diagnosis is indeed worse – mainly because I have no patience. What I did not forsee, however, was that the quest does not stop at diagnosis – but continues on….no longer for a diagnosis, but now, the quest is to learn to have a good quality of life with the diagnosed disease. So, in the end, the diagnosis is only the halfway point, right? The goal, therefore is to maintain a good quality of life during the process of finding the diagnosis and after the diagnosis is given.
You may wonder what I’m on about. If you’ve been following the blog, you know that I’ve had a plethora of health problems over the years, including a ridiculous amount of environmental, food and chemical allergies (including my gluten intolerance and casein allergy), strange muscular pain (including plantar fascitis) and of course my mental health problems (major depression, anxiety and dysthymia). For someone who tried to avoid the medical field with a vengeance as a teen, I have certainly spent a lot of time looking into medical problems. Or at least the ones that plague me.
About a month ago, I was diagnosed with CFS/ME – ie. Chronic Fatigue Syndrom/ Myalgic Encephalopathy. After struggling with trying to figure out whay I was so upset and feeling the symptoms so much worse, just because I had a diagnosis, I decided to put on my big girl panties and start doing some research. I joined the Kingson and Richmond ME group – who have proven to be a spectacular resource. It’s full of people who have had ME for years – I think I’m their most newly diagnosed member at the moment. The next “new” person that I have found has had ME for a year. I have already met a few of them at one of their frequent meetups and may even help them in September at a knowledge stall at the Kingston Carnival. I have to admit, I do not think I know enough about the disease to do this, but they did say it would help just telling people my experience with the disease. I’ve also been pointed in the right direction by my immunologist (who I only stumbled upon but who I now know is very well recommended!) and are putting methods into place to make my life a bit easier and to alleviate the majority of the exhaustion and muscle pains and tiredness that I’ve been having. That also includes keeping myself home and just relaxing.
Not many people I’ve met work outside of the home. Many have to rest or be horizontal every couple of hours. I am not the worse that I know and I thank God for that – because at this point in time, in my situation, I cannot even imagine not working with the Luv Luv in school (for one more year please God). I am also lucky that my workplace is generally quite good for helping their employees deal with any health problems or life situations that you need help with, whether it be to work from home once a week due to pregnancy exhaustion or leaving early for an unexpected emergency. The problem now, is, that I have to figure out what I can ask them to help me with. You see, it’s all fine to say go and investigate pacing and graded exercise and introduce them into your life and you’ll be fine….but it’s another thing to actually go research it, and it’s an even bigger “another thing” to figure out how to implement them into your life. At the moment, that’s where I’ve reached. I’m not sure where to start to be honest. There’s so much information overload and seemingly very little to no actual guidance or assistance in actually putting these practices into place. I really hope that my newfound friends and my not-so-newfound friend @muminmeltdown will help me with this with all their awesome advice.
I’m reading as much as I could about the disease, but I think that has to be paced as well….because from about the third month into my Masters degree (which is also about when I really started feeling tired), I was having a lot of problems reading. It’s a struggle for me to read – I cannot seem to concentrate for more than 5 or 10 minutes at a time – which has made my “to read” pile and list of books become really really long. I get headaches if I force myself to continue, and often will be reading the same page over and over for over an hour if I last that long….because I read – but somehow the message stays at my eyes and does not reach to my brain. So slowly goes it – but it’s so much easier to have somebody there to speak with you about it rather than yet another pamphlet or book or journal to read. Until I find someone who volunteers to be my guide through this CFS/ME journey, then I will keep attempting to read, try to start pacing and figure out what constitutes graded exercise (there goes my big dreams of zumba, kangoo etc. I think…).
Part of me is disappointed in how I reacted after getting diagnosed, because God knows that I’ve been doing half the things that I’ve been advised to do already. Massage is helpful when I’m really down with muscle pain, I’ve also found out that acupuncture is gold for me. I am not sure what else I could do, but I’ve been thinking of joining a nearby gym with a sauna and going once a week at least. When I was losing weight for my wedding years ago, I found the sauna for 10 minutes every time I hit the gym extremely relaxing and I truly thing it assisted with my muscle pains that I was having all the way back then (which are child’s play compared to what I get sometimes now). British weather does not help – in fact, interestingly enough, frigid temperatures and snow in Canada were less harsh on my muscles than this constant grey rain. Finally, I’ve managed to get my hands on a Natracure Hot/Cold & Compression Cuff and am trying to figure out how to use it most effectively for me.
The hot part of it is absolutely marvelous. My muscles seem to like direct warmth for sure. The compression bit is confusing me a bit though because it felt so good when I had it on but I ended up having quite a bit of pain after I took it off. It was very strange – especially since I asked another bloggy friend, Corey, about compression – because she has diabetes and runs marathons (yes) and uses compression socks and cuffs all the time. In the end, I think I used TOO MUCH compression (them babies get tight!). I used a little compression with the heat and that worked really well – but I think that I used a lot less compression with it like this so perhaps I shoudl use about that much. May try it again tonight – I just wish I could wrap it around my neck because that’s where hurts today.
Anyway, after rambling about everything EXCEPT what I wanted to talk about, my point is, that I apologise to my big sister and anyone else whose disease I’ve taken for granted while arguing that they were better off for having a diagnosis. I now realize that its only half of the journey, especially with incurable chronic diseases.
Are you in the pre-diagnosis, post-diagnosis or chronically exuberant stage? How do you deal with your chronic diseaase? Do you have any advice on how to proceed with my diagnosis? Please? I could definitely use some suggestions.