Stella Mitchell supports Sunflower Memories each year by making a donation to name a sunflower in memory of her sister, Annie. Here she explains why.

“My sister Annie was no shrinking violet. She was fun, lively, incredibly zaney and, once met, never forgotten. When Annie found out her illness was terminal, she was given the name of a Pilgrims nurse who she could phone at any time if she felt fearful or needed to talk; it gave her great comfort. As her carers, we could call, too – it gave us so much reassurance knowing we weren’t alone.

Now, two years after our bereavement, my husband, Jim, and I still feel supported. We’re looking forward to coming to our Sunflower Memories event held at the hospice where Annie was cared for.

To be among other people who have gone through loss means a lot. We think about Annie all the time, and an event like Sunflower Memories really concentrates your mind. We take comfort in knowing that, by giving to the event, we are helping to make sure that other families like us can receive the care and peace of mind from Pilgrims that they need. It’s a way to say ‘thank you’ for all Pilgrims do.”

Pictured: Stella and Jim Mitchell (Annie’s sister and brother-in- law).

When you are living with a serious illness, it can sometimes be the little things that make a big difference to improving your wellbeing.  

One of the most common physical side effects of a life limiting illness is fatigue.

For patients with cancer and other conditions such as lung or heart disease this extreme tiredness can be one of the most severe symptoms. It can start to take over your daily routine.

The good news is that help is available. There are many simple changes you can make to feel better. 

Pilgrims Hospices Lead Occupational Therapist Justine Robinson shares some practical ways to manage fatigue and feel more in charge of life.

While there isn’t a quick fix that will work immediately, the good news is there are plenty of techniques you can learn to manage fatigue so you feel more confident and ‘in charge’ of your life.

Patients describe fatigue as being more than just ‘a bit tired’; it is an excessive tiredness that impacts on their wellbeing and daily life.

The earlier you learn these techniques the more effective they are. Talk to your doctor or nurse or ask to speak to an Occupational Therapist as soon as you notice symptoms.

Simple tips to start with

Planning ahead can really help if you have fatigue, re organising your everyday activities may make things easier.

• Get to know your body Understand your fatigue patterns and work out when your energy levels are best for you to plan activities. Be honest with your friends and family about how you are feeling.

• Think about the way you do things. Can you rest halfway through a task or can the task be simplified? Talk to your Occupational Therapist (OT) about energy conservation and possible equipment to help you conserve energy.

• Look at your sleep patterns. Are you sleeping during the day and then not at night? Is anxiety keeping you awake? Try to establish a good bed time routine and limit naps during the day or ask to talk to an OT to help with this.

• Think about what is important to you. Identify the less important jobs that wear you out but could be given to someone else or dropped altogether. Prioritise what is enjoyable and enhances your quality of life.

• Talk to your doctor or nurse. It’s important to talk to your doctor or nurse about how fatigue is affecting you and your life. They can refer you to Pilgrims Fatigue Management Group or to our Occupational Therapy team. 

• There is support available if you have fatigue. You might find it helps to join the Fatigue Management Group at your nearest Pilgrims Therapy Centre. This gives you the chance to meet other people in the same situation, to get support from them and the Occupational Therapy Team.

I need more advice on symptoms, can Pilgrims help?

Pilgrims team can help you look at how fatigue impacts your quality of life and work with you to find ways to cope.

As part of our Wellbeing and Social Programme we run Fatigue Management Groups. These are an opportunity to learn techniques such as energy conservation and pacing.

We can also discuss relaxation, complementary therapy, gentle exercise, adaptive equipment and how they can help you continue to carry on doing activities that are meaningful to you. The groups are open to you and your family or carer.

How can I get a referral?

If you or someone you know is coping with a life limiting illness and you think you may benefit from Pilgrims free services, talk to your GP or Healthcare Professional about your options or click here to read about our Wellbeing and Social Programme.

We believe each and every person living with a life limiting illness in east Kent deserves quality care so they, and their family, can live each and every moment they have well. Whether its through donations, fundraising, supporting our shops, leaving a legacy, playing our lottery or participating in one of our events – every act of kindness from you helps us to give our care where and when it’s needed.

What is a hospice really like? Most people know that hospices offer care for people at the end of their life, but how many know what we offer to help people who have been told their illness is incurable to continue to live well?

Corinne is receiving help from Pilgrims through our Wellbeing and Social Programme. She explains how Pilgrims has turned things around for her and her family.

I feel embarrassed to say it now, but I thought the hospice was just a place you go to die. I’ve discovered the hospice is a place to live too. It’s been a wonderful surprise how much Pilgrims offers for people who have been told they have an incurable illness and their families.

Before I came to Pilgrims I had almost died of liver failure twice. When the community nurse asked: “Would you like me to refer you to the hospice?” I was anxious, but I said ‘yes’ because I wanted someone to talk to.

When the Pilgrims nurse came to see me and told me that I have access to so many services, it was amazing. I haven’t looked back.

As soon as you step through the door there’s always a welcome and the offer of a cup of tea.

I’m in less pain, more mobile, and I have loads more confidence.

Corinne

Help to manage my symptoms

I’m on my fifth session of a six week Energise Exercise programme, held in the Pilgrims Therapy Centre gym. It has been phenomenal.

The first week I found the energise session really hard work. I could only do two minutes or so on each machine, but I got through it.

Now after several weeks I can do so much more. It’s been the biggest influence in improving my life so far. The swelling in my legs has gone down. I’m in less pain, more mobile, and I have loads more self esteem and confidence. I am learning so much about my body.

I have been to the Pilgrims physio for help with my balance because I wasn’t walking properly before. Now I am walking normally.

Another of the big problems I had was fatigue. I had a referral to come to the Pilgrims Fatigue Management Programme. It was brilliant too. We talked in the group about what fatigue means. Together we learned that it’s ok to feel tired but how to recognise the signs of getting overtired so we can avoid that happening.

I’ve been to the breathlessness classes too, because I was struggling going up and down stairs and feeling out of breath. The Pilgrims therapist gave me some tips on what to do and how to manage it.

It’s been good to meet other people in a similar situation and hear what they’re doing to cope.

Corinne

Social support for me and my family

It’s been good to meet other people in a similar position because I can hear what they are doing to cope too. We hear from the therapists at the hospice and we also talk through topics with each other.

I am overwhelmed by the support I have had. The Pilgrims nurse phones me regularly to check how I am. It’s been fantastic for my husband and three adult children too – for the whole family. My friend came one day too.

We all feel like we’ve got someone to talk to and all my kids and husband say I’ve changed so much. I am more myself – and in some ways I feel better than I have for over a year. It’s made such a difference.

I feel like it doesn’t matter who you are you will be welcomed at the hospice.

Every class I come to starts with a chat about how you’ve been before we do any exercises, the people here really make time for you. There are beautiful gardens you can walk in if you like or just sit and enjoy the view – it’s comfortable and I’d say it’s the closest thing to home there is.

If you or someone you know is coping with a life limiting illness and you think you may benefit from Pilgrims free services, talk to your GP or Healthcare Professional about your options or click here to read about our Wellbeing and Social Programme.