One main issue is that not all doctors acknowledge ME/CFS or have sufficient knowledge about it suggesting it may not feature a lot in their training. We are very lucky where we live as our GP surgery has an understanding of ME/CFS and also provides a carers support group, of which I am a member. All carers need support, and importantly, to be reached out to, as they won’t necessarily ask for help. If a service like this was available in every GP surgery in the country, it would be a very good thing.
Dave (71) has supported his wife Lynne (70) following her ME/CFS diagnosis 8 years ago. Dave acknowledges that the couple’s local NHS services are good, yet is aware that an overall lack of understanding of ME/CFS among healthcare professionals is a key issue. He also believes that making a carer support group available in every GP surgery, would make a difference to carers and reduce feelings of isolation.
My wife and I have been married 48 years. We both worked in education – I am a retired headteacher and Lynne was a music teacher.
Lynne began experiencing a series of medical issues and was diagnosed with Bronchiectasis, which subsequently led to fatigue. After a session with our local ME service, she was officially diagnosed with ME/CFS in 2017. Looking back, it is highly likely that Lynne had ME/CFS many years prior to diagnosis.
When Lynne was told she had ME/CFS, it was devastating. The messaging was strict and conveyed the importance of working within the strictures of ME/CFS. Lynne avoided pushing- through and instead tried hard to pace to avoid boom and bust and being wired yet tired. This strict regime led to her being on edge and anxious in case something she did caused her symptoms to worsen.
Around the same time, I went to a local carers talk that was useful, the service was good and it felt joined up. Lynne has learnt to pace more naturally through accessing alternative
ME/CFS guidance available online. However, she has suffered more pain in recent years with IBS being a major issue which can impact her sleep. She tries hard not push her body or reach for pain medication.
We also pace ourselves as a couple. Socially, we are focused on our immediate family. We have two daughters and four grandchildren who we are very close to. Lynne’s parents are 99 and 100 years old, and live independently nearby, so there is lots going on in our lives.
Over the years it’s been more challenging to maintain friendships and some do find it hard to understand the condition.
Lynne is determined to walk each day to keep her fitness level up. Every day we go for a short stroll – enjoying the beautiful Devon coast or flatter woodland paths nearby. She always rests when we return home. We know the limits and keep within the constraints of ME/CFS, working our plans to adapt to Lynne’s limitations.
The stresses of managing ME/CFS is highly energy draining so by being very organised and planned we aim to minimise stresses. Lynne has tried very hard to take the anxiety out of the diagnosis to work within the parameters of ME/CFS and still have a life.
Lynne is determined to walk each day to keep her fitness level up. Every day we go for a short stroll – enjoying the beautiful Devon coast or flatter woodland paths nearby. She always rests when we return home. We know the limits and keep within the constraints of ME/CFS, working our plans to adapt to Lynne’s limitations.
The stresses of managing ME/CFS is highly energy draining so by being very organised and planned we aim to minimise stresses. Lynne has tried very hard to take the anxiety out of the diagnosis to work within the parameters of ME/CFS and still have a life.
One way that we relax is to take breaks in our caravan in the UK and Spain, as this provides everything that Lynne needs within arm’s length and it is warm and cosy. Good ambient temperature regulation helps her ME/CFS. Our home heating bills are higher as a consequence. She really seems to pick up when we’re in the caravan and thrives better in a smaller space that’s reliably warm and in the kind of consistently warm climate offered by the Spanish summer.
Lynne is a talented musician, but ME/CFS means she can’t maintain her playing for pleasure sadly. Music defined Lynne and when this was taken away, she needed a purpose and reinvented herself to find another role – as an adviser. She is great at advising our children and grandchildren, who all have great respect for her.
I look out for, and help look after Lynne every day, and I always do the catering. I make sure that we both eat well and healthily. Lynne has organised an online grocery shopping system and she does a lot of other online shopping too.
I do the gardening and cleaning. She also manages the weekly wash with my help. It works well for us. We are also in the fortunate position that if we need additional support in the garden or a deep clean in the house, we can afford it. Lynne is hypersensitive to cleaning products and certain paints, so I have to be careful to minimise their use.
I’m lucky to still be reasonably fit and healthy and I do all I can to keep well and to protect Lynne by using anti viral nasal guard when going into busy places and I am scrupulous with hand hygiene. I can always adapt quickly to change. I have a social life in the very supportive local community and am involved in various environmental and political groups.
As a carer you must be patient. There is a lot to accommodate and sometimes it can be frustrating. Lynne recognises that as much as I support her, I also need my own space and life. I like to be out in nature and walk, swim, kayak and help keep our local beach clean. I am passionate about science and the environment, and this is my switch-off time from caring.
We are in the fortunate position that I receive a state and occupational pension, so we don’t really need any financial support, but I know this is not the case for a significant number of people managing this challenging condition.
Caring can add extra costs and if you’re not well-off, there should be better financial support, whatever your age. Also, people who have the support of family carers are less dependent on other NHS or social care services.
We have used the very helpful guidance from The ME Association along with on-line access to various other social media groups and podcasts recommended by others living with ME/CFS.
I’m a big supporter of the NHS, and our local NHS has been good, but the lack of understanding of ME/CFS among healthcare professionals is a key issue. We are very lucky where we live, our GP surgery has an understanding of the condition and has a carers support group, of which I am a member. Carers need support too, and importantly, need to be reached out to, as they won’t ask for help. If a service like ours was available in every GP surgery in the country, that would be a good thing – access to local carer support groups would also help tackle the feeling of isolation.
The ME Association joins Carers UK and charity supporters Age UK, Carers Trust, MND Association, Oxfam GB,
Rethink Mental Illness, and The Lewy Body Society to seek increased visibility and raise awareness
of the inequalities carers face on a daily basis
