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
• Eating and drinking
• Washing and dressing
• Controlling temperature
• Working and playing
• Expressing sexuality
• 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;
Mobilisation – “the action of making something movable or capable of movement.” (google)
As someone who used to walk everywhere and had jobs that involved being on my feet all day, losing my mobility has been hard. I am not a person who can sit still and do nothing. In the literal sense I can walk and I potter around in the house, but out of the house I can only do very short distances on the flat and mainly use a wheelchair or mobility scooter. Not being able to walk makes every day routine very difficult and makes me very dependant on others to get around. I have used a wheelchair for about 16 years, but will never accept or get used to it.
I have a Motability car, but due to the new PIP criteria I am probably going to lose it when my benefit changes, but I have no idea when this will be. The uncertainty is difficult and my car is due for changing this year.
I have a Blue Badge which makes parking a bit easier, but often is of little use if I am on my own or with my daughter as I still can’t walk to our destination. For example at the local supermarket the disabled bays are a long way from the shop and I can’t walk from the bays into the shop to collect the mobility scooter at the information desk. I need someone to push my wheelchair and my mobility scooter is too heavy to get it in and out of car. The only time I find the Blue Badge spaces useful are for collecting my prescription as they are right outside the chemist, but they are not easy to get in and out of and are often taken up by non disabled people. When I went to the chemist the other day, out of 5 disabled spaces, only 2 of us had blue badges. Having a Blue badge also means I can have a disabled bus pass, but I can’t walk to the bus stop and there are a lot of issues about taking wheelchairs on buses.
Not being able to walk far makes every day life difficult, I can’t take and collect my daughter from her classroom, I have to have permission from school to park in school car park, I can’t take my daughter to clubs or events, I can’t go to places without someone with me to push my wheelchair. Being a Mum I miss out on doing things with my daughter and have since she was a baby as I wasn’t even able to take her out for a walk in her pram. I can’t walk her to school, except in good weather (rare event) when I can use my Mobility scooter, but it’s not the same as walking along holding hands and chatting. I can’t walk to local shop or post box or take my daughter places without help. My daughter is now able to push my wheelchair a bit, but soon gets tired or bored and it needs someone to get it out of the car!
Being in a wheelchair is very isolating as the person you are with is behind you, my daughter has to walk along on her own often in front or behind us which she hates. When she was little at least she could sit on my knee. My daughter gets very upset as she feels left out when we are out and about and also gets very anxious in busy places.
I also have a walking stick, but in reality it is more of a nuisance than help, something to drop or trip over and you can’t hold a bag or child’s hand easily at the same time. The advantage is that it shows people you might be a bit slow or unsteady, but it doesn’t mean they respect that!
If I walk too far I will end up in a lot of pain later or really exhausted. A few weeks ago I walked a little way down the street and then spent 2 1/2 days in bed! If I am really pushing myself I will end up literally unable to put one foot in front of another and this happens in a very short distance. The effort of walking means that I can’t concentrate on what is around me. Being in a shop is awful as I get so disorientated due to walking and all the visual stimuli around me, and that is in a very small shop.
I am dizzy all the time so am easily disorientated and often stumble or trip over things.
I have rails on both sides of the stairs, but stairs can still be a struggle and I can’t manage more than one flight. We have a downstairs toilet and I have a kettle in my bedroom to try and limit trips up and down. It is most frustrating to get up or down the stairs and find you left something you need where you came from. I often feel disorientated coming downstairs because of the dizziness.
Although I do drive, I can’t drive far, so only do the school run and get myself to appointments locally and collect prescriptions. This is very limiting and puts a lot of pressure on my husband who works full time. I live 40 miles from my family who are having a lot of problems at the moment, but I am unable to get to see them without my husband, this makes me feel useless and a burden and also very isolated.
Using a wheelchair is not much fun, I am always at the level of people’s arms, bottoms and bags. People tend to have no respect at all and will obstruct me. Being in the wheelchair still doesn’t mean that the outing will be easy as sitting is uncomfortable and I can’t see or access things easily. Also being out usually means there is a lot of visual stimuli and noise which is very tiring. Being pushed along can make me very dizzy especially if the person pushing thinks it is fun to mess about and swing the chair around or go very fast, it might be fun for them! I also get very cold sitting in the chair so it needs to be pleasant weather and then I still need to be wrapped up warm and have a blanket. I have a thick memory foam cushion to sit on which helps with the discomfort of sitting, I can’t use a wheelchair without one. I also need the footplates, I see so many people in wheelchairs without footplates, but it is so uncomfortable to have your legs dangling. The other advantage of footplates is that they do protect my feet a bit when I get pushed too close to something which often happens as the person pushing can’t see my feet properly, I’m glad I don’t have big feet!
I find using the Mobility scooter hard work as you need your wits about you in case people walk in front and of course you need to control where you are going. I don’t use mine a lot, occasionally for taking Emily to school or for going down into the local shopping area with Emily. I rarely use it on my own. The scooter is too heavy to put in and out of the car, Rob can manage it, but it’s not something he could do all the time. I occasionally use the scooter in the supermarket, but they are big and clumsy and it’s hard to move around and do shopping. It is a little easier now I can tell Emily what we need and she can find things and she is good at packing shopping bags.
With me not being able to walk this also has an impact of the amount of exercise the rest of the family do as we have to use the car far more than I would like and it’s not really possible for Rob to push my wheelchair that far. We have in the past done longer walks and even mountains, but it’s not really possible now with Emily as well. Taking Emily to school by car means she doesn’t walk much and I can’t take her to the park or out for a walk. I feel she misses out quite a bit because of my limits, she gets upset if school ask for people to help out on trips or walks as she wants me to do it and I would love to.
People say it must be great to just sit and be pushed everywhere, but I hate it, I am not a lazy person and I like to do my own thing. In the wheelchair I see what the person pushing me wants to see and go where they want to go. People also tend to think that I must be stupid too and either ignore me or talk down to me. If people see me sometimes in my wheelchair and sometimes walking they think I am lazy. I only walk very short distances eg picking Emily up from school. Why do people think that all disabled people are lazy and stupid?
I have physio once a month which seems to help the stiffness, pain and spasms, I don’t think it makes me more mobile, but it may be preventing my mobility getting worse.
Having the wheelchair means that I am not stuck in the house as I would be without it, so it is helpful, but I am very dependant on others to get out and about which is very frustrating. Many places are difficult to get around, some places totally inaccessible. I have seen lifts that don’t fit the wheelchair and a person and lifts where I need to fold footplates in to get in! Surfaces need to be fairly smooth, the wheelchair gets stuck in gravel and sand, grass can be awkward and cobbles are very uncomfortable both for me and the person pushing.