I thought it might be a good idea to show people what an average day is like in my world at the moment.
I worry people see me out and think I’m like that all the time, they don’t realize that might be the one and only time I journeyed outside the house that week. It’s becoming very obvious people don’t understand what goes on behind closed doors. I would also hate for friends to think I’m being ignorant by not attending things etc when in their mind they think I’m living a normal life.
A Day In The Life of a CFS Sufferer…
9-10am – Wake up. Lay there for a while just slowly waking up & having some quiet time (it takes me a long time to get going in the morning for my body to summoned some energy to walk to the bathroom)
10am – Mum will make me breakfast an omelette & spinach probably
11am – On a good day, have a shower, get dressed into my uniform (my CFS uniform of trackies & tshirt or PJ’s)
12pm – Watch TV, read for a while, generally rest from getting dressed
1pm – My mum will make me lunch. Salmon & salad.
1:30pm Rest
4pm – Make a cup of green tea. Rest.
7pm – Mum will make us tea. Chicken/fish with vegetables. Rest.
9pm – Make a cup of nettle tea & go upstairs to get ready for bed. Mum does my physio on my back.
10pm – Bedtime.
Wow what a fun day. Yet people think it odd when I get annoyed when they complain about being bored. If their bored they can go for a run, jump in the car & go out. I’m stuck. I actually never get bored, hard to believe? I think I’m just used to it now.
This can differ anywhere from being a worse or a better day. Above is a very average view.
I probably make it out the house once, maybe twice a week at best. Then it’s in my scooter or wheelchair & perhaps only to Tesco with mum or the library to choose a book/DVD. But I never go anywhere alone.
I was so pleased I made it out on my birthday for a full day out. That was Monday, its now the following Sunday & I’m still pretty much bedbound. I’ve got showered today though so today is a better day.
There is a Chronic Fatigue ‘scale’. If a ‘normal‘ person was 100%, working 5 days a week, enjoying the weekend, having a general full busy life. I’m about a 25% somewhere between these two…SEVERELY AFFECTED30%Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult. Children may be too ill to access any education at all. This should be respected and kept under review.20%Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few, short periods. Unable to concentrate for more than one hour a day but can read for about 5-10 minutes at a time.
Link – Functional Ability Scale .