Day One

Today is the first day of my blog. I hope to be able to write every day, depending on how I’m feeling. Some of you may be wondering why I’ve decided to write a blog in the first place. Since I’ve been ill, I have never met another person with CFS. There are CFS conventions, but I don’t have the energy to travel. I looked for a local CFS support group, but the closest one is too far away to drive to. I thought about starting my own, but when I read all of the work it entails, I knew I didn’t have the time/energy to do it. So I decided to write a blog. It’s my way of connecting with people in my life who I am not able to see often, and to connect with those with CFS or other chronic illnesses. Having CFS is very isolating. It’s isolating because many friends and family members do not understand it. CFS sufferers are not often given the sympathy and support of someone who has cancer. It is isolating physically, because the person with CFS often has limited energy for visiting others or talking on the phone.

In case you are wondering, if you happen to find grammatical errors, I am not doing it on purpose. The intro I posted yesterday, I read three times before posting it. Through the brain fog, I don’t catch those kinds of errors like I used to. Oh well, it’s not like I am writing a novel. I learned to let go of perfection a long time ago!

After I posted my blog yesterday, I was feeling okay, just a little sore and stiff since waking up. As the day progressed though, I felt pretty dizzy and tired for the rest of the day. I am pretty sure the dizziness is caused by low blood pressure. I eat salty foods to try to help raise my blood volume, but it doesn’t always work. I can normally do some driving, but if I’m feeling dizzy, I stay home if I can. Driving while dizzy kind of feels like driving under the influence of something. So being dizzy yesterday, I didn’t run to the supermarket. I ended up making some pork on the BBQ and some Bisquick biscuits with no vegetables on the side. Even though I was feeling crappy, I still wanted to try to cook for my husband because he had to work yesterday. I feel guilty often for not being able to cook more and better meals for him. On a good stretch I had last year, I was cooking decent dinners about 6 days a week.

CFS symptoms and severity vary so much from person to person. I understand there are people with it who are bed ridden. I wake up every day thankful that I can get out of my bed and do something on most days. When I woke up this morning, before I got up out of bed I took my blood pressure. I’ve been doing it for the last week because I want to have some recent readings to give to my new doctor. My readings thankfully are not as low as they used to be. This morning my reading was 91 over 58. Kind of low considering your blood pressure is supposed to be at its highest in the morning. The cortisol levels in your blood make it rise, to help you get going in the morning. My doctors don’t get to see my lower numbers in the morning when I first get up. I usually see doctors in the afternoon, because I am usually less foggy brained then. With the white coat factor, my blood pressure is usually 110 over 70, which looks wonderful to them. I know I’m kind of going off on tangents today, I was talking about this morning. I felt pretty dizzy and foggy headed this morning. Everything I did this morning from brushing my teeth to making breakfast for my husband was very deliberate. On days like today, something that is normally an easy task that you’ve done so many times you could do it in your sleep, becomes this complex task. One in which every step takes thought and focus. It was also difficult to keep my brain focused. My husband asked me to get the plates out of the microwave. I turned around to help and asked, “Where are the plates?” There is nothing wrong with my hearing, and I am not disinterested in what he was saying. I was trying to level off a scoop of this energy enfusion drink without spilling it all over the place. So in trying my best to focus on that, I could not also focus on what he was saying. My lack of focus has to do with the low blood volume I have. If you do not have enough blood flowing to your brain, it makes it difficult for your brain to work correctly. When around other people, and my brain isn’t working quite right, I’ll tell them it’s a lack of blood flow to my brain. That usually makes them laugh. I’m not sure they understand that it’s true, but I take any opportunity I find to poke fun at myself that I can. It’s better than beating myself up for it. I did way too much of that in the past.

So now I’m upstairs on the computer, writing my blog. I was going to try to do some vacuuming since it’s been about 2 months since I’ve done it, but I’m still feeling dizzy. Yeah, I know that is gross, but my house is pretty large, and I haven’t been feeling well enough physically well enough to do it. I would have a cleaning company come in and do it, but we can’t afford that. Not having a sparkling, clean house is one of things I had to let go of. The dirt will still be there tommorow for me to vacuum if I am feeling up to it.

Well that’s all for today, I hope you enjoy the rest of your weekend. Thank you for reading.

Until tomorrow…
Linda