A Day in The Life...

Have to say, I thought I was the only one that walked into walls in the morning. Or doors, or furniture. As far as it goes though, it's one of the more amusing symptoms!

(I realise this is an old thread but I was glad I wasn't alone in that!) x

You know it is weird because I was just saying to my mom, how at first when I heard I had FM I was mad. Not because I had a disease but because noone really knew what caused it or knew about it. What frustrates me the most is having to explain to doctors what it is. Then (of course ) let no forget that they are doctors and they tell you that you don't have pain with FM. How can you tell me I don't have pain. I have a new doctor now. She was to run test to see what else might be going on with it.I am all for it but get me off of this muscle relaxers. I am already having to use toothpicks for my eyes and you want to increase what? I don't think so. Anyways, I have to get over being so mad. I came to turns with what I have and realized I am not alone. Not that I wish it on anyone. I hope this helps someone else.

I find the tiredness awful it doesn't seem to make any difference even if I have an early night - I feel woozy, spaced out and foggy for most of the morning. I would definately say the afternoon is best for me, but by 4pm I'm usually ready for keeling over.

I have learned the art of pacing - a job that once took me a few hours, now takes me a few days, like housework!! Well its not going anyway, it'll still be there tomorrow I just do what I can ie. clean bathrooms, dust (but usually after someone's kindly written me a "Clean Me" hint in the dust).

An essential coping strategy is to have a sense of humour and to not be so hard on yourself. As Tammy says, as awful as this condition is its not going to kill us. My sister Catherine, died last February aged 36 from Cancer - the two little girls in the photograph are hers aged 5 and 7 - so I should really count my blessings as I will get to see my own children grow up, she doesn't have the luxury.

Living with Fibromyalgia isn't like living a normal life, although everyone expects you to because noone believes or comprehends just how sick you are. For example: if I were having a normal conversation with someone I had only just met and mentioned that I had Breast Cancer, Lung Cancer or HIV or Lupus, the individual would immediately recognize and empathize with the illness. They would have a general understanding that having one of those diseases, my pain and suffering were great. When you tell someone that you have Fibromyalgia one of three things usually happens. Either their eyes will glaze over with absolutely no awareness of what that means, they will say something like, "Oh yes, I have heard about that. What is it?" or they will minimize it to make you feel better by saying something like, "Well, thank goodness it isn't ternimal like cancer!" What people don't realize is that we don't need to hear any of that. We need people to recognize that there is something worse than dying from a disease and that is LIVING with a disease!

As a FM sufferer, my nights are often sleepless. When I am able to fall asleep for any period of time I will wake up "frozen" by painful stiffness, unable to move into another position so I can try to fall asleep again.. Often I awake after 8 hours in bed going through this cycle repeatedly unrefreshed and so stiff I cannot even get out of bed. I take my pain medicine and wait until the pain subsides enough for me to move enough to get out of bed and go through the abolutions most people do upon waking. I am usually very foggy when I first wake up and it usually takes a couple hours to shake this fog. I also have a stiff, staggering gait in the morning and am very clumsy, often walking into walls instead of around them.

I have worked as a retail manager, a waitress, served as an Air Traffic Controller in the USAF, drove a school bus, managed a bakery and worked as a master decorator in a bakery. All of these are high energy fields and take a reasonable amount of organizational skills. Now I can no longer work, am basically house-bound and spend my days in bed trying to manage the pain and stiffness in between short periods of light housework. Some days the pain is manageable and I feel well enough to do something as strenuous as vaccum the house, others I spend the whole day in bed, either in too much pain to move or don't have the energy to do anything. These days the pain is worsened by the fact that I don't move around as much so there is no making it better. The days I feel like doing something and do it, the next day is worse because I did.

That is just a description of the physical pain. The "fibro-fog" is sometimes so bad that I cannot handle even the slightest mental challenge, which could just be a telephone call. On those days I refuse to answer my phone, cringe if there is a knock at the door or handle normal things like bill paying, paperwork, work on the website, etc. I cannot find my words to have a conversation and suffer sensory overload from the frustration that builds from trying. This serves only to worsen the dementia.

I hate the days when I have to dress, go out to run errands or go to an appointment because it takes so much effot to do so. Recently I am afraid to drive anywhere because I just don't trust my judgement anymore. I am not sure if it is the loss of cognitive function, the meds or a combination of both but it is scary.

This is what a day in my life is like. I guess I should be glad it is not terminal like cancer, huh? This is so much better.

Thanks for reading. What are your days like with FM and CFS?