All Move in Erewash

Nikki has lived with Hypermobility Ehlers-Danlos Syndrome (hEDS) all of her life. She experiences fatigue, hypermobility, subluxations  & joint pain, digestive disorders and mild cardiovascular issues. Her pain and energy levels fluctuate on a daily basis along with dysautonomia. She took early retirement from her nursing career as her pain & fatigue became too much. 

Nikki values walking and time in nature to rejuvenate her overall wellbeing. She adopted a rescue dog a year ago to help her stay active, she did a lot of gardening during the Covid-19 pandemic to avoid sedentary behaviour and maintain her wellbeing. She has trained as a Work-Life Balance Transformation Coach & NLP Practitioners to support others who are struggling to maintain a healthy balance in their life, and also does voluntary work for her local voluntary action group. Nikki has really benefitted from reformer pilates and swimming as well as acupuncture massage, which she has funded herself. 

Although daily pain and energy are still an ongoing challenge, Nikki is staying mentally & physically active as much as possible with her condition through self-management strategies. She has reached a point of self-acceptance and is able to adapt to her limitations. She has learnt different techniques over the last few years, that work for her. 

Nikki has co-founded ‘Sofa to Stroll+’ a monthly gentle walking group for people with long-term conditions who meet at Elvaston Country Park on the 3rd Thursday of every month at 10.30am.

Lisa* lives with fibromyalgia, diabetes, and mental health problems. She has made major lifestyle changes since becoming unwell and is now leading an active lifestyle. Lisa values the mental health benefits of being active and this keeps her motivated. She regularly uses the pool and sauna at West Park Leisure Centre, where staff support her wellbeing. Lisa enjoys swimming, even if she can only do a few lengths – she recognises that this is better than nothing at all. 

Severe pain can make it difficult for Lisa to be active, she’s learned to rest when needed and say no to other things. Mental health challenges can also cause her to withdraw. Despite, these challenges Lisa is usually able to get back to her active lifestyle, showing her resilience and determination. Along this journey, Lisa has had positive support from Elephant Rooms (in Draycott), her mum, and the health and wellbeing team (Derbyshire County Council) – she credits this service for changing her life.

Lisa is a positive role model for anyone who lives with chronic illness and mental health problems who wants to make positive lifestyle changes.

*Pseudonym used to protect confidentiality.

Since contracting severe Covid-19 five years ago, David has lived with long-term conditions including fibromyalgia, long covid, high blood pressure and is currently being assessed for PoTS (Postural Tachycardia Syndrome). He experiences fluctuating symptoms such as pain, fatigue and breathlessness, which make daily life challenging and unpredictable.

His healthcare journey has frustratingly been complex, involving multiple referrals and contradictory advice. While some professionals have provided helpful guidance, poor communication between services means he has frequently had to repeat his story.

David does some volunteering and tries to stick to a routine to provide structure in his life. This isn’t always easy given the impact of his long term conditions. The volunteering keeps him moving and gives him the flexibility he needs to manage his physical symptoms. On better days, David enjoys walking and cycling, but he has learned that pushing beyond his limits can worsen his symptoms for days. David uses pacing strategies and adapts activity according to how he feels. At home, he has adapted routines and equipment to save energy and manage symptoms. 

David has the desire and determination to remain active to keep his muscles and joints working well. He values physical activity as a key way of maintaining independence, supporting his wellbeing, and engaging with family life despite the challenges of his health conditions.

Dee lives with psoriatic arthritis, a rare condition that she has inherited which causes flare ups of fatigue, brain fog and severe pain, which can occur in any part of her body. She has had a couple of surgeries on her foot and wrist but still experiences pain around her body. She has also developed osteoarthritis in her feet, which can sometimes make it difficult to walk.

Dee has always taken a positive approach to living with her long term conditions. Dee is a busy lady and rarely has a moment to sit down. She enjoys gardening, growing her own veg, being around her pets, looking out for her neighbours, photography and spending time with her family, taking trips to the theatre. Dee stated that because she has a life away from her condition, this helps to keep her going. She does not want her long term conditions to define her. 

This has not come with ease and Dee spoke about the struggles she has had with her mental health. She acknowledged finding it difficult to cope with the rapid impact her long term condition has had. She has struggled with not knowing other people who live with such a rare condition and finds it hard to do the things that she wants to do without feeling completely exhausted the next day. 

Dee has had to adjust the physical activity she does, she has always enjoyed being energetic, getting her heart rate up and doing fast-paced activities. It has become increasingly difficult to keep up with this type of activity and she now finds it hard to find activity that is suitable for her. Nevertheless, she completed the 12-week exercise by referral programme, and has since taken up walking, including Nordic walking, pilates and aquafit classes. She has also signed up to become a Nordic walk leader as she enjoys this more than regular walking and notices the benefits it brings. Dee has a strong desire to remain active, as she knows that her health will decline otherwise. Dee enjoys the social aspect of being active, she likes to attend groups with like-minded people and have a natter with them. 

Dee remains determined to do as much as she can whilst she still can rather than let her age catch up with her. Dee would like to encourage anyone living with a long term condition to stay active, by doing what they can. It may not be as much as before, but it’s a step in the right direction to maximising the opportunities left in life.