Please welcome Maggie Stanley as she shares her experiences living with the effects of chronic illness and pain, and learn how she now helps others – as a positive bi-product. Maggie has been a therapist and trainer for over 22 years and owns Pace for Living. She lives in Somerset with her husband and two dogs. Maggie has a passion to help people gain their inner peace and calm. She believes that there are different ways to find the path to our inner peace and calm. The past 22 years of learning and teaching has given Maggie the skills and experience to guide people to find what path to take to find calmness and peace within.
Long-term conditions. Do you sink or swim?
A few months ago an acquaintance, during a conversation, mentioned to me that I seemed much better and nicer these days. I must admit I was a bit taken aback by this comment. On exploring this statement further I realized that she had meant that I had been a grumpy and withdrawn individual for a time. In reality I was in pain due to my health condition and coping with a new medication.
This exchange is just one example of coping with a long-term health condition. The problem with many illnesses be it physical or psychological is that to the outside world you look healthy and quite normal. People often say when they discover that I have connective tissue disease and Rheumatoid Arthritis “ Oh but you look so well and healthy”.
Being a therapist and a trainer seems to cause me a few more added issues. The view appears to be from people, is that I can always sort myself out and never suffer with stress or pain. I have the training and skills so it should not happen to the like of me.
I have learnt over the year as result of my experience as a therapist and trainer and because of personal experience that you have a choice. The choice is that you either allow yourself to become your condition, which results in the loss of yourself as you become swallowed up by it. Or that you just happen to have the health problem, it is a part of you but it does not define you.
When you throw a stone in a still pond there are ripples that circulate out from the stone when it hits the water. So it is when you develop a long- term condition. The ripple effect radiates out and affects many aspects of your life especially relationships.
Firstly you have to come to terms with the condition yourself, not easy, as information is not always readily available. There is support however it can be a task in itself to try and find it, let alone discover it and use it effectively. The Internet although has its uses can scare the life out of you and the information can be overwhelming and confusing.
Close family and your partner can be a challenge when it comes to trying to help them understand what is happening and the help and support you need. It was hard for my husband to fully understand my condition. He is an engineer and for him he views on illness is quite simplistic – if it is broken you can fix it.
It was hard for him to understand what I needed. If I was unwell he felt that I needed to go to bed to get better. His simplistic approach to my condition failed to take in the complexities of the condition as well as the strange reactions I had to some of the drug treatments that were tried. This did put a strain on our relationship as we both tried to deal with my condition.
This was a hard time for both of us and to add to the stress and strain there were a few issues with my family going on. I had always been seen as the big sister, elder daughter who was there to help and support the rest of the family when problem arose.
When Stress Attacks
Stress needs to be recognised and managed with long-term conditions as it can spark off attacks and make things worse. In my situation I had to admit and accept that first I was struggling and secondly I needed support. It can be hard to admit when you need help, especially when you are fiercely independent as I am. Whilst being strong-minded can be helpful it can also be destructive.
Dealing with close and more distant friendships has been the hardest part to cope with. Funnily enough my husband was the easiest one to confront and find a way forward. I realized that he was confused and not sure about how to handle my condition.
My specialist nurse suggested an appointment with both of us to talk through things. This meeting was a real help as hearing things from a third party on mutual ground certainly put things into perspective. After the visit to the hospital my husband realized that is was important for me to learn to find my own way forward. I needed to set my limits and personal boundaries and when I needed help to ask for it.
My wider family was more difficult. When I told them that I needed to look after myself more it was not acknowledged and dismissed. I think the reality was hard for them to take on board. My husband helped here and talked to them, hearing it from him they seem to take more notice and backed off. I had to set some clear boundaries and keep to them, these really helped as in the beginning, although I did feel a bit guilty.
Some of my circle of friends surprised me by the way I was avoided and excluded especially when I was dealing with different medication trials. I have a few very close friends, who were amazing and very supportive. They are great people and we help and support each other when life becomes a challenge.
Change can be hard at times especially when it comes to do with issues around health and loss of ability either physically and or mentally. It is hard enough for the individual. However people around the individual do not always understand illness and if they cannot see it is either something to be avoided, or the individual is grumpy or just plain odd.
Things that have helped me to cope:
- I said earlier that dealing with long-term conditions for me is about choice. I chose not to be controlled by my condition. However I have had to learn my limits and implement new boundaries especially around certain family members and some friends.
- Support is important, it is there however if you do not ask or tell people what you need then you cannot become angry if it is not given. It can take time to educate others about the kind of support and help that you need.
- Listening to the body and recognising the signs of stress. tiredness and pain.
- Fatigue can be an issue and acknowledging when you are tired can be a huge benefit.
- Setting up boundaries and keeping to them. For example saying no if you are tired or having a bad day. It is also important to take into account what is realistic for you to take on.
- Practising meditation and mindfulness – these techniques help to calm the mind and help you to focus on the hear and the now. Meditation has helped me greatly and mindfulness helps me cope with pain.
- Watch out for the monkey on the shoulder – this is the negative, critical and judgemental chatter in the head. This can be a sign of being venerable and tired. Sitting and meditating or doing things mindfully can help you to get out of the head.
- I don’t have all the answers however I have learnt what does and does not work for me. I still have good life, walk my dogs; still do the job I love and most of all have fun.