Daily Living with ME pt1

 

Way back in 1990 I began training to be a nurse. It was great, I loved it so much, but sadly like many other things in my life it was brought to an end by ill health. When we were assessing patients we used a model called Activities of Daily living devised by Roper Logan and Tierney.

This was brought to mind recently when my Mum asked for help with the assessment of my Dad’s abilities and needs with his Parkinson’s disease. It’s amazing what you remember after 26 years, yet can’t remember what you did yesterday!

It has set me thinking about my own daily activities and limitations and the effects they have on me and my family.

The model uses the sections;
Maintaining a safe environment
Communication
Breathing
Eating and drinking
Elimination
Washing and dressing
Controlling temperature
Mobilisation
• Working and playing
• Expressing sexuality
• Sleeping
• Death and dying

Everyone who has ME/CFS has different needs and limitations, I can only portray my own.

I thought I could write a blog about each element so this one will be;

Maintaining a Safe Environment.

One of my main symptoms is dizziness which means that I often walk into things eg door frames, tables etc and if there is something to trip over I will. My special awareness is impaired and gets worse with fatigue
Before I do an activity I have to assess whether I am well enough and therefore safe enough to do it, I often misjudge my own ability and end up in a pickle (a very technical word for it!).

Having a child in the house means I also have to be aware of her safety and if I can trust her to do something like making me a hot drink if I am unable or if she is trying to help me. Thankfully she is normally sensible and will ask me if she can do things she is not sure of and as she gets older I can ask her for help with things if she is in the right mood. But I can’t fully relax as I still need to be aware of what she is doing.

I am not supposed to have a bath without another person in the house due to my dizziness and difficulties I may have getting in and out of the bath.

My concentration is impaired so I am liable to switch something on and then forget about it or start doing something and then get distracted and forget to go back to it. This may have safety implications and I am always worried I have left something switched on or forgotten to lock door etc and then use energy worrying or having to go and check up on things.

I have extra rails for stairs and bathroom.

I have to be careful when standing up as my blood pressure falls and can make me very dizzy and I need to stop until it settles.

I manage my own medication, but often forget what I have taken. I try to note what I have had, but that is not always fool proof either. I keep all my medication together and sometimes take the wrong thing at the wrong time due to my brainfog, but then I feel so stupid and cross with myself

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When using my mobility scooter, I need to be aware of what is around me and whether it is safe to move. People are very inconsiderate and walk in front or won’t give me room to move, but it takes a lot of energy to be alert enough. It is my responsibility to be make sure that I am being safe for them too.

We have smoke alarms and a carbon monoxide monitor, but I am not sure if I would hear them during the night due to my hearing loss and not having hearing aids in when asleep.

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