Living through illness

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Its quite a while since I wrote anything, I havent felt the inclination until now.

I have a chronic illness called M.E. Most people dont really have any idea what it is all about. In the 90’s it was sadly referred to as yuppie flu. But it is a chronic and debilitating  condition.

So what is M.E?

The main symptom is debilitating fatigue. I liken it to a battery that has no life in it and no matter how much you try to charge it up, it loses its life again very quickly.  Other symptoms for me include vertigo or motion sickness, feeling I am coming down with the flu, malaise,  not able to deal with noise, confusion and trouble finding my words (this  is referred to as brain fog). There are many more symptoms but these are just a few.

A couple of years ago I used to walk alot, now I have to get taxis, travel on a bus for one stop and use the chair lift at my dads to get up the stairs. I loved gardening, still do but it has been contained to a few house plants now ,  my most recent purchase a beautiful little orchid.

There was also been a big lifestyle change three months ago. My dad had a bad fall and broke his femur which has left him housebound. I am staying with him. It has not always been easy with this condition but I am learning how to pace and rest myself. Dad  can do certain things and we work together. I do the cooking but basically things just get shoved in the oven and look after themselves.

God moves in mysterious ways. These last few years I have been very lonely,  mostly because this condition isolated me. I have had to give up many things and I  have not had the energy to see my friends, although we talk on the phone. So now that I am with dad I have lost the loneliness. I still come home to my flat and stay, but most of my time is with dad. I am so grateful and we are both supporting and helping one another. I even make my own bed while I am still in it, haha, and we have a lady who comes in and cleans.

My days are structured. In the morning I rest for an hour on the bed, an hour in the afternoon and an hour after tea. I find this is works  for me.  I have to limit myself to how much I do, even watching tv and so I put in little rest periods. Because I am in a relapse my walking is limited, I need to sit down after maybe a hundred yards and then I am done in.

Up until recently I hadnt given much thought to my future, the days were rolling into each other and maybe I was just resigning myself to this illness, but this past week I have come across so many people on the internet who have recovered and it has made me stop and think. I know if I do the right thing and give myself time, I  could eventually get back to some sort of  normality.

This past year I have been attending the Fatigue services and have been given a lot of help and information about M.E. The day I walked into the first session  I felt I had come home.

So now, I help dad. I have to watch myself but if I am honest I do very little for him, but we both seem to have some sort of mutual dependance on one another and I like that and so does dad. We laugh, we cry, we argue, we listen but most of all we care.

What does my future hold? I dont know.  I have all the time in the world and I am not in any hurry.

 

best wishes,

barbara