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;
Communication
I have a hereditary hearing loss and wear hearing aids provided by a private audiologist as the NHS ones are not powerful enough and cannot be set up for my specific pattern of hearing loss. They are very expensive and this makes me feel very guilty. They are also prone to breaking down. Even with hearing aids it is still difficult to hear and I need people to speak clearly, but not shout at me.
Hearing requires a lot of concentration and is compounded by my ME. Even with hearing aids in I use subtitles to watch TV and I need to be able to see who I am talking with. Any background noise or group situation makes communication impossible.
Even if I can hear what someone says it is often difficult to process what they have said and it’s difficult to follow a conversation or something that is out of context. I find it difficult to understand my daughter and her friends, which is distressing for all of us.
Due to the cognitive issues from the ME I can’t listen to someone and do something else at the same time, which is also very distressing for all concerned.
I am unable to use a telephone so communicate by email and text, this feels very impersonal sometimes and is open to misinterpretation. I am sensitive to what people say or imply and get very upset.
Not being able to hear properly adds to the isolation imposed by the ME as it is so difficult to socialise or make contact with people. Most of my friends are online, many I have never met. I have to limit my online time due to fatigue and dizziness, but I often over do it.
As well as being deaf I have hyperacusis which is a sensitivity to loud noise and tinnitus. The Tinnitus is very distressing and very loud, the noises I hear range from a constant humming, buzzing, whirring noise, to explosive noises, speech, music and knocking. This leads to a lot of confusion about what I can actually hear and despite being deaf I can never hear silence. Tinnitus makes sleeping and or relaxing very difficult and many of the noises are frightening.
I have just started wearing glasses for reading, but I spend half my time trying to remember where I left them and find it a nuisance having to take them off every time I look up! I am quire upset about needing glasses as my eyes have always been the one thing that was ok and my sight was perfect. I know this is a normal ageing process rather than the ME or other health issues, but it just feels like one more thing that doesn’t work.
When my fatigue is very bad I struggle to speak and find it difficult to form words and or think of the right word. I do find it difficult to put into words what I mean and am much better at writing things than speaking them. I have found writing things down can be quite therapeutic and is often helpful in understanding things for myself and explaining them to others, but it’s not always possible to do this and I often feel like I have got things stuck in my head that I can’t cope with.
I started to write my blog as an outlet for feelings, but it soon became clear that there is not such thing as freedom of speech so I have gone back to keeping things to myself which isn’t always healthy.