I was recently diagnosed with CFS and am now on the hunt for how to get this brutal illness under control so I can get my life back. I used to not really even believe in CFS, I had a friend who had it and I really thought she was just kind of lazy, stressed out and a bit of a hypochondriac - am I ever paying for my ignorance! I owe her and all of you who I thought were like that a HUGE apology.
Up until the summer of '08 I led a very active life. I was always into sports and travel and kind of just worked in between to finance my interests! In August of '08 I took a hiking/kayaking vacation, competed in mountain bike races, spent with friends at the cottage and worked lots of shifts in between. In September I got sick with a flu type virus that turned into a cold that turned into bronchitis. By November my energy was gone, I was sleeping all the time and my cognitive functioning went WAAAYYYY downhill. I went to the doc and after bloodwork was told I had Hashimoto's thyroiditis (hypothyroidism), given synthroid and told to expect to see 'my old self' come back in about 3 months. It didn't. Instead the cognitive issues continued and my memory and concentration were gone, the sleepiness remained and turned into a kind of fatigue that words can not describe (a combo of hungover, drugged and as though your body has been weighted with lead) and my muscles ache as though I ran a marathon without training and was hit by a truck on the way home). If I try and exercise, sometimes even a long walk can put me to sleep for hours. It has now been over a year of this. So see a couple more docs and they say CFS.
The hardest part in a way is that it comes and goes. I have usually 4-6 weeks of feeling this way and being non functional and then it is like a switch goes on and bam I am pretty much fine for 2-4 weeks. Then it switches off agon and the cycle repeats over and over and over. This makes life impossible - how can I plan anything or work when I never know when the switch will flip. I can't really say - I'll work hard for 3 weeks then I'm likely gonna need a month off! I soooo miss my sports - both the physical and mental benefits. The doc told me I may never play sports again and that instead I should take up yoga and stretching. I love yoga but refuse to believe I really will never get better enough to play sports. Also during my good stretches I try and do as much as I can, socialize, get a lot of work done, be active as its the only good part of life - my doc also told me to stop this and to do less during the good times so as not cause a flair up - but the bad times are so incredibly awful that I can't imagine giving up the good times. I'm not going to sit at home when I'm feeling good.
So I am interested in people who have CFS and what has worked for them or in nurses who work in a clinic / home health in the management of CFS - what has worked for you and your clients? I have a great doctor and we are trying lots of things but I am curious as to what else is out there that has worked for others that might be worth reading up on and bringing to my doc's attention. Anyone go into remission or recover fully from this? What do you do that optimizes your physical and mental health? How do you cope, especially work wise with the cycling and periods of total non functioning? Please make your suggestions about you so it isn't construed as giving me medical advice!
I know there are lots of alternative therapies and I'm a little leary of them but who knows that may change - pretty much I'll try anything once!
If you are a hater or a disbeliever you are entitled to your opinions - I get that - its kind of how I was until I got sick with CFS. I made the mistake of typing CFS into the search bar for other posts and came across a multipager of a nurse saying that as soon as someone walks in with CFS she does an eyeroll and thinks loser, followed by pages of people agreeing about all the losers with FM and CFS. Yikes! If that is you all you need to go is click the back button and move on - no need to come in to add your eyerolling.
and that instead I should take up yoga and stretching. I love yoga but refuse to believe I really will never get better enough to play sports. Also during my good stretches I try and do as much as I can, socialize, get a lot of work done, be active as its the only good part of life - my doc also told me to stop this and to do less during the good times so as not cause a flair up - but the bad times are so incredibly awful that I can't imagine giving up the good times. I'm not going to sit at home when I'm feeling good.