Here’s part 4 of the survey results, looking at relaxation and dealing with the emotional impact of the illness.
Have you tried relaxation techniques/ meditation/ yoga/ tai chi? How useful were they? How often do you practice? How understanding of your condition is your teacher?
Back when I was ill I started painting and found it very helpful to relax. I was also taught EFT and used that whenever I felt stressed and listened to hypnotherapy tracks provided by the NLP therapist I saw. I used them when I felt I needed them. I think they helped my stress levels immensely which I believe helped me to recover. On reflection with my current understanding I would encourage the use of such techniques daily.
I have not been interested in these. It would take up too much energy, which could be better spent.
Relaxation techniques: Deep breathing in darkened room whilst resting. Visualization of places that you feel good/ happy when stressed/ anxious/ feeling unwell. I imagine being outside with the sunshine on my face. Tensing up muscles from bottom (feet) to top (head) to help relax.
I practice T’ai chi, meditation and yoga daily. They are all things that enhance my energy level. The relaxation that I’ve learned doing these things is something I can put that into practice whenever I notice myself getting tense or stressed. The teacher of my weekly yoga class is extremely understanding of my challenges and encourages everyone to listen carefully to their body so as not to overdo things. I’ve also signed up to an online guided meditation service for my evening meditation which I find more difficult to do on my own when I’m tired. When I’m really struggling to relax I listen to a yoga nidra cd.
Have you experienced Depression/ anxiety / emotional liability as a result of this illness? What has helped you cope with these?
When I first got ill I did get quite depressed. It was difficult to come to terms with how my whole life had been snatched away from me. Now that I’ve accepted that life has to be different I look for different ways of being happy. I still get down from time to time but have learned that if I allow myself to be, the feelings soon pass. I also find that I can overreact sometimes, in a similar way that PMT or overtiredness can exaggerate your emotions. Again I find the best way to deal with that is to just accept it, allow myself to be, whilst trying not to act until I know I’m in a more balanced state.
I have not experienced clinical depression, but I have had long periods of feeling terribly down and continual crying and disinterest in most things, but during these time I can be snapped out of it with a good joke, but then the pain will come back and I will return to being down. I do suffer from anxiety. For the first year of being ill, I was almost in denial and would push my body to the limits, but would suddenly run out of energy which would render me unable to move and when this happened when I was in town or away from the home it was terribly scary. So I now get rather nervous when I go out, incase this does happen.
I think it is natural to feel depressed and anxious about many things when you are diagnosed with a condition such as ME/CFS. At the time EFT helped a lot.
Do you think you went through a grieving process for your old life? Do you have any advice for others grieving their old life?
I think it is important to stay as positive as you can and rather than grieving for old life, being determined, optimistic and positive about your new one.
Most certainly. Grieving and mourning would be the way to describe it. Not only do you no longer have your life, your abilities and a functioning body, but it also affects your dreams and your future ambitions. 2 1/2 years in and I have to admit that I often think of my old life and miss it greatly and am still in shock over how little of my old life I would now be able to achieve. For other people grieving I would say that it does get better, even though it still hurts, but as you get to grips with what you are able to achieve and your limitations, your dreams and life change and if you channel your energy in the right way, it can be for the best. I now almost think of myself as a different person.
For me grieving was a really important part of the process that lead to me accepting the illness, especially the first time around. Once I’d accepted that life had to be different I was able to focus on making it more positive but it took me about 6 months to get there. The second time around I had a good cry, but I knew how important it was to accept the way things are and I found it much easier to focus straight away on a positive here and now rather that what I had lost. Feelings of grief still pop up from time to time, but I accept them too and they soon pass if you don’t cling on to them.
How do you keep your spirits up? What helps you to be happy?
I try and look forward and think of future possibilities. Also comedy programs and having fun life loving people around me really help. I can’t get out to the shops much so I enjoy internet shopping and enjoy the little buzz when the items arrive (Although I don’t think my bank balance does). I also have two dogs and a cat which have truly been my lifeline. They have not only given me great company, but have also given me a sense of purpose, as I am the one that feeds, defleas, worms and brushes them. And knowing that there are things that depend on me have helped, as I had to give up my job and felt terribly lost and useless.
Appreciating little things, especially in nature. A bird singing, seeing a different bird on the feeders, blue sky, a flower, growing vegetables and watching them develop, a nice smell etc. Laughter (I try to make sure I watch something funny on tv every day and have become less intellectually snobby about what I find funny). Spending time with family and friends. Valuing the achievements in what I do, feeling useful even in small ways (cooking the family meal, all be it with help, writing the blog and the book). Being creative. Smiling at people and getting a smile back.
Twitter. Cuddles with my cat. Counselling. Laying in shade in sunshine with sunglasses on. Getting a massage or haircut. Achieving small targets. Movies. Days when I’m accepting of my illness.
Now? Lots of things! My husband, little girl and family, our dogs, the people we help, a rose in the garden, picking a home grown raspberry… At the time, believing that I could get better and not being dragged down by people who were negative and full of doom and gloom about the condition. A determination to get well and seeing small changes, no matter how small, kept my spirits up.
Were you judged negatively /misunderstood because of this illness? How did you deal with that? Do you have any advice to give other people about being judged/misunderstood?
Yes and it is a tough one. If they are close try getting them to read some books/websites on the subject.
Thankfully I have been treated and understood very well by almost everyone, which has made it a lot easier. If I was told that it was all in my head and to just carry on, I don’t think I could have survived! I have heard of people with ME being told that they have depression and to just take some antidepressants and just get on with it and similar stories. It makes me despair when I hear of people with ME being mistreated or misunderstood.
I think it is important to educate friends and family right from the beginning, so that they too have time to come to terms with changes and can adjust.
When I first got ill it was the doctors I most struggled with. Although I was given a diagnosis of ‘ME?’ all my doctors wanted to do was treat me for depression. Fortunately my family, friends and employers all knew me well enough to understand that there really was something physically wrong with me. I was also fortunate to be assessed by a very understanding occupational health doctor who helped reassure me that I wasn’t losing my mind. My advice is to trust and believe in yourself! Don’t waste energy trying to convince people who don’t want to be convinced. Be well prepared when there is someone you need to convince. Prepare in advance a little sound bite that you can use over and over again to explain to people who genuinely want to understand.
How did you manage your relationships with your friends and family? Any particular difficulties? How did you overcome them? Any advice?
It was very difficult at the time, impossible to plan, guilt over disappointing people etc If there is one person who does understand ask them to explain it to the others. Much depends on your personal circumstances though.
My mother has fibromyalgia and CFS and my father had post viral fatigue for two years when he was younger, so they were both very understanding. My brother made a few snide comments at first but now is understanding. All my friends have been amazing. They understand that I can’t go out in the evening to clubs etc, so meet me for non-alcoholic meet ups at reasonable hours. The rest of my family have also been very understanding. I don’t get to see my family or friends as much as I used to, but it’s enough to keep good relations and still be within my capabilities.
I’ve been lucky to have very understanding family and friends. In fact the illness bought me closer to people the first time around as I had to learn to accept help. It’s actually been more of a challenge this time while my symptoms have been quite mild. It’s hard for people to understand that I can do all the things that I do, only because I am so careful about pacing and effortlessness. When they see you doing well they expect more from you, or forget that you have limits. I have learned to be very clear about my boundaries. If I do this, it can only be for so long and I must be back at a particular time to rest etc.
You can see all the parts published so far on this page, scroll down for older posts. One of the respondents’ complete answers can be found on her own blog page Sky Blue River. There’s one last part to come next week that will look at at big life changes, help and support and what we learn from the experience.
I’d love to hear from more of you so please share your experiences in the comment box below, or complete one of the versions of the survey here.