10 minute read
What does the future hold for scleroderma care?
Problem-solving
Our environment can make a big difference to what we are able to do comfortably. Ask yourself, is everything organised, and easy to clean? Are the things you need easily accessible, with cupboards at the right height? Does anything present a problem, and do you need anything to change? Equipment is also important, because if certain tasks are more difficult, there might be a gadget that could help. For example, something as simple as a perching stool for the kitchen can make a big difference, especially if you are spending long periods in that space. Using equipment in the right way can save a lot of time and energy. Social services and community occupational therapists can sometimes provide essential items, such as raised toilet seats and bathing aids. Other equipment is usually available to purchase and may often be cheaper than you might expect. Do not forget to check the preloved and charity shop markets as these can be great for bargains. For more information, please
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Prioritising
No one can do everything, especially when you have limited energy. If you start to consider your energy level as your ‘budget,’ you can identify the best ways to spend it. It is easy to fall into a pattern of using it all up on work, or on the mundane. In fact, it is the aspects that add fun and enjoyment to our lives that help to restore our energy, Next time you look at the tasks on your list, ask yourself: should I do it,
dump it, or delegate it?
What could you leave out, and could anything be done by someone else? Remember to keep the aspects that you enjoy doing and that add value to your life.
“Pacing is about getting everything on the ‘to-do list’ done, but in a more achievable way. This means doing a consistent, manageable level of activity on most days when our energy levels are probably ‘average’ (or in-between).” It is important to know yourself, and what is normal for you. By considering and identifying your drainers and sustainers you can learn how to manage them.
Are you drained or sustained – what charges your battery? Love yourself!
Fatigue may affect every area of life, but equally it is the different aspects of our lives that impact upon the level of fatigue that we experience. If we consider our energy levels as our ‘battery,’ it is important to understand that how we spend our time can help to either charge it or drain it. Some aspects of life will help to sustain our battery, others simply drain it. Eating well, social activity and getting a good night’s sleep will all help to boost energy levels. On the other hand, emotional stress, pushing ourselves too hard and the pressures of our working lives can all have the opposite effect. Stress and anxiety will drain our battery and lead to mental fatigue. Remember that you do not have to get physically worn out to become emotionally drained. It is important to know yourself, and what is normal for you. By considering and identifying your drainers and sustainers you can learn how to manage them. Think about what affects you and influences your energy levels, for better or worse. Consider also how you are spending your days, and any adjustments you could make. We all have an individual level of fatigue, so if you notice a sudden change for the worse, ask yourself if there could be a reason, and do not be afraid to go back to your doctor if necessary. Self-compassion is a big part of looking after ourselves. When we have health issues, we often need to allow ourselves to do things a bit differently. Remember that you do not need permission to seek help. We instinctively know what is helpful and what may cause us harm, so in looking at what you are doing on a typical day, think about what helps and what probably does not. Often, when we need to take care of ourselves, it is easy to lack compassion, self-criticise and unwittingly turn into our own worst enemy. After all, if we would never insist that our friends or family keep pushing on if they were struggling, why should we do it to ourselves?
Patricia’s story
Patricia George is 83 and lives in Norfolk. She has had a long career in nursing, and originally worked in theatres. She then moved to a neonatal unit and continued in her profession until the age of 70. Patricia officially retired at 65 and then stayed on the bank for a further five years. Patricia has Scleroderma and Raynaud’s, as well as Sjogren’s and emphysema. She was initially diagnosed with CREST at the age of 50 during the late 1980s, when she spontaneously called into the GP surgery on her way home from work to see if there was any chance that she could be seen. Fortunately, there was a locum available who immediately said: “it’s scleroderma.” This is Patricia’s story.
My mother died when I was eight years old, she was a children’s nurse so maybe that is why I wanted to train as a nurse myself. I did a year at college after my O-Levels and then I started my training in 1956. I qualified as a State Registered Nurse in 1960 and I worked in the operating theatres. I was married in 1961 when I was 23. My daughter was born in 1964, followed by my son in 1967. Today, I have four grandchildren. It was after the birth of my son that I left theatre nursing and moved to the neonatal unit. I don’t know if anything triggered my condition. I was really fit in the past, we lived on a farm and I was doing a lot; I remember I used to take loads of potatoes and eggs to work with me. Then, I suddenly had an accident, when I lost the tip of my ring finger in a potato harvester on the farm. I always wondered if this was perhaps a kind of trigger. I also had to see a dermatologist many years ago, as I kept getting rashes on my skin: when we changed our theatre scrubs at work something would trigger an allergic reaction. So, I just don’t know. I also saw another consultant and I was diagnosed with Raynaud’s, which was the first indication. At that time, the doctor said it was something that people just live with. One day during the late 1980s I had been to work, and on the way home I had a lot of discomfort. I went past the village GP, and I stopped, even though I did not have an appointment. There was a lady locum there and she told me at the time that she thought it was scleroderma. I was very lucky that I was diagnosed so quickly. I didn’t really need treatment for years. I was referred to Professor Scott in Norwich, and I have attended clinics
“Before, I was the Chairman of our ever since. Things were not that bad at the local Women’s Institute, time, but they and I was the leader of the have got a lot Parish Council. I also used to be a church warden, but I have had to stop, worse since. My alimentary tract was affected and all because of the that was the fatigue.” first thing I was diagnosed with, and I have had this ever since. My stomach always feels full. I do have fatigue which is awful. I was not really aware of this during my working life on the wards, I would get tired as normal when I was working but that was it. But the fatigue has gradually came on, more and more over the years and it has got worse since I have given up work, especially over the last two years. Before, I was the Chairman of our local Women’s Institute, and I was the leader of the Parish Council. I also used to be a church warden, but I have had to stop, all because of the fatigue. Now, I have to make myself get out of bed every morning at 9am, otherwise I would just lay there. Because the fatigue is so bad, I get up and then sit a while and then I have to start applying my skin creams:- the skin on my ankles is really tight now. I do have a massage regularly and this does help, so I treat myself every week-toten days. I also take vitamin D which I buy from the chemist. I have been well served by the occupational therapy team. I have tendonitis and they gave me a thumb brace; they have also made me two resting splints for both hands. One of the worst things I have is the acid reflux. I also have a persistent fungal infection in my oesophagus. My reflux seems to have altered and now I get a really awful taste. I wake up in the early hours and then I am awake more-orless until it is time to get up. I have had gastric physiology done and I am supposed to eat little-and-often, but my stomach always feels full. This is the worst thing for me. I can feel food going down and it feels like it’s sticking in my oesophagus. I had a very traumatic event in 2014, when I lost the big toe on my right foot to a blood clot. It happened in April and the vascular surgeon was reluctant to remove it as she thought it would not heal, so I had a black toe until December of that year when it eventually had to be amputated. It took almost another year to heal with weekly dressings from the very good practice nurses at my surgery. The foot is still very painful as the other toes are now turning under. Having this condition affects every part of me. I feel that I have aged 10 years just in the past year. If I hadn’t been about to retire when my symptoms started to get bad, I would have had to give up my job. This
“For me, Christmas has had to change since my is mostly because of my hands. diagnosis. This year, I don’t I was want anything but to be able nursing to cook a Christmas dinner in the like I used to.” neonatal unit, and I wouldn’t have been able to intubate a baby or take blood; even dressing a baby would have been very difficult. I have also had to give up my hobbies of calligraphy and metal-detecting. I met a lovely friend through metal-detecting and she still comes to see me. She metal-detects on our farm and then shows me what she has got. Someone from the metal-detecting club still calls me regularly. I am lucky as I don’t have any commitments now, I don’t really have to do anything. Even though I don’t have to go for a walk, I still try to have one every day. I can’t stand for too long to do any cooking; I am not sure if this is because I am short of breath. My daughter does my shopping now and I do have ready-meals. I hardly eat any meat because I keep chewing but it won’t go down. My daughter and my daughter-in-law bring me roast dinners every week or so. It is difficult to know what to eat sometimes. But I live alone now so I don’t have to cook for anyone. I am lucky because I have cleaners and a window cleaner, but I can’t get a gardener at the moment. I do have someone to mow the lawn. For me, Christmas has had to change since my diagnosis. This year, I don’t want anything but to be able to cook a Christmas dinner like I used to. They love my Christmas dinners, but I can’t do it any more because of the fatigue. Now I like to be here on my own. When the grandkids were small I used to go and watch them open presents, but not anymore. I am always invited but I find I don’t like eating out anymore. These may be little things, but they mean a lot to me.
