Susan's Story

Susan is 42 years old and lives in Bolton. Following the birth of her son 11 years ago she has struggled with chronic fatigue syndrome, repeated infections, peripheral neuropathy, IBS and fibromyalgia. She shares her journey from diagnosis through to acceptance of her condition, coping strategies and a fantastically positive attitude towards life.

Eleven years ago I became pregnant with my beautiful son. My body didn't react very well to my son's hormones which meant that my immune system became compromised. I developed pregnancy induced asthma and then the infections started. Once I had, had my son I continued to feel exhausted and kept getting one infection after another, I thought it was just because I was a new mum. Most of my infections were chest and lung related. I was working part-time and tried to push through it all, until I contracted a lung infection and ended up in A&E resuscitation. I was told at that point that if this last set of antibiotics didn't work for me then they didn't have anything else that would help. At this point I realised I wouldn't be able to work anymore. I was ill all of the time, exhausted and in so much pain.

After five years of this I was finally diagnosed with chronic fatigue syndrome (CFS). From then on my condition has continued to worsen, and I now have irritable bowel syndrome (IBS), peripheral neuropathy and fibromyalgia. I know that I am likely to have these conditions for the rest of my life, and I have come to terms with this, but still hope that one day they will find a cure.

In some ways my disability has changed my life for the better. I see things that other people don't, and I can spend time just watching nature and enjoying the company of my friends and family. The small things become so much bigger and more important. If I can spend time each day listening to my son and being with him and my husband, then that's a good day and all the pain doesn't matter. I have also found that the less stress you have in your life then the better your symptoms will be. Stress has such a huge impact on long term illnesses and pain.

Crochet saved my life. Crocheting and knitting can help with the peripheral neuropathy pain by sending good nerve signals to the brain and helping to reduce the pins and needles sensation. You can also pick up marbles with your feet and put them in a bowl to help with pain here too.

I think finding something to take your mind off pain is very important. Watching TV or reading a book doesn't do this enough, whereas, if you craft you keep your mind active and so reduce the pain you feel. It also gives you a sense of accomplishment when you finish something. I felt useless at my lowest and didn't see the point anymore. Then I started crocheting and found I could make things for my friends and family, it gave me a purpose and helped reduce the amount of pain I felt.

I have started trying reflexology and have a brilliant therapist who comes to my home and has a number of CFS and fibromyalgia patients. I haven't been having the treatment for very long, but I was amazed at how accurate it was.

I am taking medication but am in the process of adjusting this at the moment. Amitriptyline was brilliant but the longer I was on it, the higher the dose and then my heart rate went up to 127bpm at rest; it was decided that I needed to come off the medication. I spent eight months reducing this and changing over to pregabalin but found the side effects worse and the benefits less. I am currently reducing off of pregabalin and am going to try nortriptiline next. I have tramadol for my worst days but this doesn't really do much for the pain. I also take Buscopan when having an IBS attack. I have tried numerous different medications over the years and have yet to find one that really helps. As long I can take something that allows me to get some deep sleep though I am able to cope.

I do believe that there is a correlation between weather and pain. First of all, it is a fact that the less vitamin D you get the more pain and pain symptoms increase. I always find my symptoms are worse in the darker months of the year. I also think that air pressure is a huge factor. If there is a thunderstorm coming I am crippled with headaches, and if the air is damp and cold I find the pain in my fingers and joints are worse.

I know I will probably always wake up tired and in pain, I can't remember what it feels like to not be in pain, but I have come to terms with that. I think that's the most important step: accept what you have and work around it.