Here’s the final installment of the self-help survey results. This part focuses mainly on sources of help. (You can see all the other parts of the survey on this page – scroll down for earlier parts)
Once again, a huge thanks to those who took the time to share so much information. I’ve found it really interesting to see some of our commonalities and some of our differences. I believe that we all need to tailor a self-help program specifically to our individual needs and to what seems most important to us at the time. I hope that you have found reading these responses interesting and hopefully helpful and inspiring. I strongly believe that there are a great many little things that we can do to help ourselves that make a small difference. Eventually these little things can all add up to quite substantial improvements in health and even full recovery!
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. One of the respondents’ complete answers can be found on her own blog page Sky Blue River.
Did you get a lot of support from your friends and family? What do you think they did that helped you the most?
Pete was a rock, thankfully he never stopped believing I could recover.
Helping with practical tasks such as washing up, changing bed linen, driving me places, buying food/ cooking food. Phone calls/ texts/ occasional visits for short periods of time. Talking about life that continues outside of the M.E bubble.
The first time I was ill, my family and friends rallied around to look after me as I couldn’t look after myself. Their practical help was invaluable. This time the practical help is on a smaller scale but it’s wonderful to know that help is there when I need it. The best thing for me is having friends that understand that I still need social contact even when I’m not up to much of it.
Have you received professional advice on pacing? CBT? GET? How helpful were they? In your opinion did the professional involved have an appropriate understanding of the nature of the illness?
I had CBT which helped me come to terms with the illness and once I was able to understand and accept it, I was able to pace. The CBT practitioner was a lovely understanding woman who also pointed out when I was using too much energy, but I didn’t realise it. I am also 7 months into a treatment called the Perrin Technique, and a big part of that is pacing and the practitioner makes me look over my week and point out if I have done too much.
By the time I received information on pacing from consultant I was on the way back to health and he basically said just keep doing what you are doing, so I didn’t use pacing that much. I found pacing ok but quite negative as it made me feel that I was stuck in the illness.
2. What prescribed medications have you found useful for what symptoms? How much do you think medication has contributed to your improvement/recovery?
I took thyroxine for a couple of weeks, before deciding to stop as every time they tested my blood the TSH levels would be different. I was not keen to be on a drug that potentially reduced my ability to conceive and would be a lifelong thing unless it was really necessary. I spoke to Prof Pinching on the issue and he advised me that thyroid levels can be all over the place with ME/CFS and it would be ok to leave it for a while and see what happened. After a few months my thyroid levels returned to normal. I was also offered antidepressants by my GP but refused them
A year into the illness I was put on duloxatine, which helped greatly with the pain in the joints and muscles. A month ago I started taking Lyrica and it has helped my body feel more ‘normal’ and has improved my sleep.
Early on in my first illness I tried all kinds of prescription pain killers with poor results and an accompanying feeling that I was just poisoning myself and making the illness worse. My doctor was also very keen to get me to take antidepressants which I resisted. Then I read about low dose amitriptyline and it was a bit of a breakthrough. It seemed to relax my muscles, little by little reducing my pain and it also helped me sleep better. It seemed to help me break a negative cycle and I was able to build further on those improvements. This second time I got ill I tried low dose amitriptyline again but it just seemed to zap what little energy I had. This time the side effects were definitely worse than the benefits.
Did you try any kind of complimentary therapies? Which? How helpful did you find them? Do you believe you saw a skilled practitioner? In your opinion did they have an appropriate understanding of the nature of your illness?
I have tried homeopathy, vitamin injections and the Lightening Process, none of which made a difference. Although since starting the Perrin Technique, I have improved in energy levels slightly, but significantly I have not suffered from any secondary bugs or infections, which was a big problem for me. I would get a chest or ear infection which would take 6 weeks to clear and then a week later it would come back again, but this is no longer the case. I also find that massage helps relax my legs and arms which then reduces twitching.
I’ve had great results with one particularly skilled acupuncturist who seemed to really understand the illness and less significant help from two others, one who did ‘mind/body’ work. I’ve also had some help from a homeopath but no significant breakthroughs. I think it’s good to get help with your healing if you can afford it, every little helps, but the most important thing is finding a good understanding practitioner. I think the people I saw who weren’t quite as helpful were those that didn’t really get the illness although they were all really open to my individual experience.
Massage therapist- accupressure has been helpful for me. Has a knowledge of chinese medicene and what the different aches and pains might mean from that perspective. Counsellor- I described myself as a busy buzzy bee before I became ill, now I have to be a monk in a retreat. He advised me to think of things that provided the bee part of me with the honey it needs to be happy, which could continue to allow me to be a monk. So to find activities/ projects that allow me to be happy and well at the same time.
Yes, Homeopath, Oesteopath, NLP Practitioner they were skilled and they all helped but I can’t really remember whether I felt they understood the nature of ME/CFS, just that a combination of them helped my recovery.
How much do you think complimentary therapies have contributed to your improvement/ recovery?
I would say that 50% of my improvement is down to complimentary therapies. Before getting ill, I have to admit, that I thought that complimentary therapies where rediculous and that if you are ill, tablets and doctors were the only viable option, but I have most certainly been proven wrong!
I would say that the first time around about 60% of my recovery was down to my acupuncturist and the rest of it was to do with self-help. This time around complementary therapist have contributed about 30% to my improvement but I haven’t been able to afford to find a good therapist and have had to rely on self-help. Until I had an illness that the medical profession could offer no help with, I would never have considered alternative medicine. This illness has opened my eyes to different ways of looking at health.
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100% even though some of it was self-applied!
Has the experience of having this illness changed you in a good way or taught you anything of value? How and what?
It has definitely taught me the importance of health! It has also made me much more understanding of other people’s illnesses. Before getting ill I was blind to the idea of illness and what an incredible impact it has on people’s life
I am so much happier now, both Pete and myself are different people from who we were back when I was originally diagnosed. I am stronger physically and mentally and much more resilient.
The experience of overcoming this illness has taught me so many life lessons that make me the person I am today. E.g. to enjoy the little things in life; to live in the here and now; to pay attention to love; to fully be myself and to allow myself just to be etc. Although I have the illness again now, I am still able to live a happy and fulfilling life.
A final note to share the anniversary of this blog. It’s now been up and running for a year! Thanks to all of you who have shown an interest this year. It’s been great to see that I’ve had over 4000 pageviews from all around the globe. I hope that I’ve been able to offer a helpful resource. If just one person with ME/CFS has been able to make some improvement to their health and happiness as a result of reading my blog then it has been a worthwhile venture. I’d love to hear more feedback. What do you like or not like about my blog? What have you found useful? What would you like to hear more about? Please let me know what you think!
